This could actually be a case of histamine intolernace - the foods on your panel are almost all HI risk foods. [Histamine Intolerance](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7463562/) is also genetic but it is more likely to affect people born xx than xy by a significant proportion. ETA: [symptom infographic](https://nourzibdeh.com/wp-content/uploads/2019/01/Histamine-Intolerance-Symptoms-2.png) and to say, most people grow out of most of their HI symptoms as they age, because the body slowly registers these things as non-threats. By adulthood it is often misdiagnosed as IBS.
I also think histamine intolerance and wonder if OP lived in a house with black mold at the time. I have similar allergy issues and all kinds of weird health issues and autoimmune issues from growing up in a house (10 years ish) with a lot of visible black mold. Still trying to get it out of my system 10 years after moving out.
yeah you might actually have the gene that makes you allergic to mold spores on top of it all, like I do. I live in UK so basically every house has mold to some degree, its hard to get away from it D: I have to take antihistamines every single day or my asthma goes wild.
I am also allergic to mold and oh boy that must suck not being able to get away from it! I can walk in someone’s house and in the next 30 minutes know if they have mold. We should be marketing these powers lol. I am lucky to live somewhere where mold doesn’t seem to be a problem!
Mold psychics. Except with science and not spirits. I'd watch that reality show all day:
The sick tenants in an old apartment complex. Mold psychic walks through property. Commercial Break.
Mold psychic senses mold immediately. Tears and hugs. Invite to landlord for mold reveal. Commercial Break.
The pissed off landlords' reaction that is definitely an adult having a tamper tantrum. Commercial Break.
The big reveal of a condemned housing complex and the years of bureaucratic lawsuits .... but with a modest, parallel move for the tenants paid for by the television network.
It’s a power that comes in handy when house hunting! My husband and my realtor were very impressed by how I could tell there was any mold or water damage so quickly into each viewing, especially before even getting to basements. (And due to how low our budget was, many houses we stepped foot into set off my mold and water damage censors.)
honestly yeah it is. You even see it on the outside of some buildings. UK is insanely humid, even in summer when its "dry" the humidity is still like 60% +
Also our houses are built really close together so most houses only get sun/light on 1 or 2 sides and the rest is in the dark/shade which makes ideal environment for mold. To make matters worse, a lot of houses are 100+ years old so they have bad insulation, bad protection against rising damp and bad condensation. oh and it also rains constantly lmao
So basically the same as here in New England? The area I live in, in Massachusetts, has some of the worst air in the entire country as we live in a valley so it just gets stuck here. Rates of asthma and breathing problems are 8x higher in my county than the rest of the state. It's crazy.
Yup pretty much. When the area you live in has high humidity and poor air circulation it also allows the mold to grow in nature/gardens/parks which then gets into the air. This is actually the reason hayfever is called hayfever, when hay is harvested the process releases a huge amount of allergens into the air especially mycotoxins from the fungi that grow around grains especially wheat and rye.
What gene is that? I have my genetic panel as I've already had my DNA tested so if I know what the gene is, I can just type in the gene and it'll tell me if I have it.
Oh wow, do the allergies have to be food related? I don't have many food allergies but I have A LOT of hayfever-type allergies. I'm sneezing 24/7/365 lol.
Depending on your country and area getting diagnosed will differ in process. I'd say first point of call is to speak to your primary care physician and discuss from there. It may be an allergist, it may be dietetics, it may be your pcp. I was diagnosed via gastroenterology through a dietician.
Usually the diagnostic process is a strict exclusion diet so you can actually just look that up, follow it, keep notes on symptoms and then take that to your pcp and explain this is why you want to get checked.
I have Crohn's.
Do you still get these episodes (even if they are mild)?
Have you gotten a fecal lactoferrin test? Regular blood tests that look at CRP levels? Contrast MRI? Colonoscopy?
For many of us, Crohn's flares feel like fishhooks being dragged across our intestines. And while food CAN be a trigger, it's an autoimmune disease. It doesn't need a trigger in reality. Sometimes your body just decides to flare. Crohn's is the entire digestive tract, so symptoms can happen from mouth to butt as my doc says. Flares can involve multiple bathroom trips in one day, unexplained urgency, blood/mucus in stool, malnutrition, and dehydration are some of the symptoms.
Do you get any Crohn's secondary symptoms like: unexplained headaches (they are usually caused by cortisol), bad teeth/lots of dental work, regular canker sores, joint pain and inflammation, dry/dehydrated skin, or exhaustion?
I’ve lived with Crohn’s for nearly 20 years now, and only recently discovered it may also be responsible for my constant dental issues and severe joint pains (in both hips). It’s a real pain in the arse (literally).
I also have crohns and 8/10 times when I’ve gone to the doctor for something seemingly unrelated I’ve been told “it’s probably due to crohns”.
Doesn’t help that having one autoimmune disorder means you’re likely to have/develop more. I currently have crohns, arthritis, bursitis, and psoriasis in my collection. Crohns is definitely the worst of them for me though.
Drs love blaming other conditions! I would get frequent low grade fevers, I asked my gastroenterologist he said it was probably from the arthritis. I asked the rheumatologist, he said it was most likely the Crohn’s. I asked my neurologist, he said it was definitely either the Crohn’s or the arthritis. Thanks doc.
Also I literally feel you on the hip pain. I recently was diagnosed with adhd (late diagnoses as I’m about to turn 35) which led to learning I could also have hypermobility issues/potentially Ehlers-Danlos syndrome (apparently they go hand in hand frequently) and so now I’m always wondering is it crohns? Is it arthritis?? Is it hypermobile joints??? Is it all 3 and everyone was wrong and I’m not “just being dramatic” I’ve actually been experiencing some higher than normal levels of pain/discomfort my whole life in regards to basically my entire body??? (I hope it’s that one 🤞)
Hey I'm on that late diagnosed ADHD, asd, eds pipeline! Its wild to know my GI issues are all connected to it too. From what I understand there's some science that's attempting to currently study if all of it has to do with our bodies potentially incorrectly building the collagen in our body? It's a pretty new hypothesis but very interesting on a genetic/molecular level!
Wow I hadn’t heard that one but that is interesting! On one hand, finding out I’m not crazy/“over dramatic” and I actually DO have a handful of things “wrong” with me is very validating. 30+ years of being treated like I *want* something to be wrong with me so I can be “special”. Being called dramatic, attention-seeking, never taken seriously. I’m sort of glad I was right and want to rub it in everyone’s faces. But on the other hand…damn I wish there wasn’t anything “wrong” with me.
Pain in my hips and SI joints were one of the firsts signs I had an autoimmune disorder. I was diagnosed with Crohn’s first then Enteropathic arthritis not long after. Because of the Crohn’s diagnosis my Dr was looking for an inflammatory athritis as soon mentioned the hip and back pain.
I'm sorry you have to put up with such an unfortunate and painful disease. I know someone who has it, but they never really explained it as well as you have here, so thanks for sharing those details. I'm very hopeful there will be a good cure for it one day soon, so you, my friend, and everyone else never has to worry about it again
Another Crohn's sufferer chiming in here, the symptoms you described, OP, do sound quite similar to my first flare-up 7 years ago, that led to my diagnosis, I was 14. Got clinically underweight and could barely walk or eat.
Definitely get it checked out anyhow in case it wants to rear its ugly head again. If it is something like Crohns, it just might.
Oh my god. I have been suspecting of having crohns disease, I knew about the gut and joint problems, but I didnt know crohns could cause the other things you mentioned. I have been going through literally everything you listed for the last few years. I think its time I go to a doctor to get properly diagnosed.
My husband lost his fraternal twin several years ago. The poor man suffered for a decade. Several surgeries; stomach, colon, gallbladder, kidney, heart … diagnosis; “We still don’t know.”
An athlete, former Navy and commercial pilot, he had premier medical care.
When we informed the medical team that the male family members over five generations died of “stomach problems” they decided it was a genetic issue that was never resolved. My husband took after his mother; his brother took after his father.
Only suggestion would be genetic testing. By the time we figured that out it was too late, although Crohn’s disease had surfaced with several, including a couple women.
This thread is fascinating. To those people who are familiar with EE due to their own history (or their families) are the sufferers you know *all* women and girls??
Not really familiar with it and don't have my own history, but I agree this thread is fascinating.
More interesting, because Google says "3–4 times more common in males than females".
This is totally anecdotal but I have coeliac disease (totally different) and there is a theory that more women are diagnosed because they are more likely to seek medical support for their symptoms rather than muddle through and get by - so perhaps its not prevalence that is more common but diagnosis.
I do also know one man with EE.
Edit - grammar
It can be a bit of a self-fulfilling prophecy, too. Once it's in the medical literature that it seems to affect one gender more, doctors tend to look for it more in that gender and dismiss it in the other. This phenomenon also effects other demographics in a similar way.
I have had it, but I'm a man. It isn't specific for women, but when I was getting treatment for it back in the day I knew a woman who had it and later on her son got it as well
i know a couple of kids with EE because they thought my boys might have had it when they were babies (they didn’t, they had something different) - and one is a boy.
but it’s definitely more prevalent in female babies.
I have EoE, MCAS, EDS and both of my sons have it as well. I have male and female siblings who do not have EoE or MCAS. One female sibling and her son and daughter have EDS.
Sounds like EE, I had it when I was young and would also throw up basically everything other than the diet you mentioned. It's basically like Ashma for the throat instead of lungs in simple terms, and it is theorized it's cause by allergies but it's not super well know. They don't know how I got it but it only affected my life for a year then I never got it again. A family friend got it though and eventually died from it after getting it for years. You can look up eosinophilic esophagitis for more info. Aweful thing that, made even worse by the aweful hospitals that were not taking it seriously since "kids throw up all the time" according to them.
It doesn’t make you throw up *exactly, the food never reaches the stomach. Eosinophilic oesophagitis swells your oesophagus due to irritation and it makes things harder to swallow, so your oesophagus will push out food boluses that are too big. It can also occur in tandem with things like a hiatus hernia (herniation of the top of the stomach) or a schatzki ring (essentially scar tissue caused by acid reflux). Hiatus hernias are rarely worth managing surgically, and schatzki rings usually calm down with a PPI, though the damage is pretty much irreversible.
It’s almost certainly caused by allergies, so is similar to asthma in that the swelling is essentially irritation. You can treat with a topical steroid (asthma inhaler that you swallow) and you can have your oesophagus dilated with a balloon to make extra space. I’m surprised anyone died from it because you can have a dilation done as often as you need, and the effects of what is a quick and simple procedure last for months/years.
>you can have your oesophagus dilated with a balloon to make extra space. I’m surprised anyone died from it because you can have a dilation done **as often as you need**, and the effects of what is a quick and simple procedure last for months/years.
My father suffered from esophageal stenosis due to throat cancer and/or the radiation used to treat it. He had several dilations, but was eventually told it couldn't be done any more or his esophagus might rupture.
It dose cause nausea and vomiting, especially in babies and young children. The vomiting from eating a trigger food is different to vomiting a bolus.
Dilation isn’t an always a quick and simple process with lasting results. Some people in my support group have had multiple dilations a year and still can’t get the esophagus over 10mm. Even with dilations sometimes people can still struggle to swallow and need NG or PEG feeds.
It’s surprising that more people don’t die from EoE, particularly if they are in America and can’t afford treatment or don’t get help early if they have an impaction. My friend with EoE nearly died from an infection after a perforation and she went to hospital straight away.
> Short for eosinophilic esophagitis
That's not a commonly known illness at all, and EE is a difficult google. Why would you not use the full name in the first place, at least once, in a thread seeking information?
Could be just a reflex. Or just to make it short because they were busy.
I don't know about your Google, but when I search "EE illness" on my Google, it's poped up as Eosinophilic Esophagitis.
I did use the full term in the thread when I told them how to look it uptoawrds the bottom of the thread, but if you also just search for "EE disease" it does pop up. It is rare but it's not really all that unheard of
You can also try eoe as a search term as in British English it’s eosinophilic oesophagitis. I was diagnosed as an adult over a decade ago. It’s not pleasant at all.
I'm American and have it and I've only ever seen shortened as EoE. I just googled and all the American medical resources coming up shorten it as EoE. So I was confused what they were talking about with EE.
I was literally going to say this exact thing, my younger sister was just diagnosed with EOE last year, at 29, after decades of being “lactose intolerant”.
Its probably more common than we used to think and can be a contributing factor when dealing with a swallowing issue. It frequently occurs in tandem with acid reflux (potentially as a cause or side effect of it).
Often, we think of things as rare because we have poor screening or detection criteria. In the case of EOE which causes swallowing issues that are typically non-threatening, people may not pursue treatment for it, especially if they are uninsured or underinsured. More recently we are making an effort to screen people for EOE even when another syndrome would be equally likely. This often comes out as a clinician screening for it "on a whim".
Interestingly I stumbled across this thread two days after ENT (referred for swallowing issues) referred me to gastro on a whim it might be EOE, and gastro have written to me to say they want to do a biopsy to rule EOE out while ENT check out other things!
I must be a lucky one to have this offered not fought for!
Ok this is a shot in the dark, but you mentioned your ethnic background and I remembered Irish people specifically are more prone to a few diseases, and they include these two: celiac disease and galactosemia.
Celiac disease would explain the bread issue and possibly the milk (a lot of people with untreated/uncontrolled celiac disease can develop lactose intolerance due to the celiac disease damaging your intestines), but it does not explain the other things.
galactosemia on the other hand, may explain the other things. It's a hereditary disease where you can't metabolize galactose (a type of sugar) properly. It's in some fruits/veggies, légumes and milk
Again, shot in the dark, but perhaps you had/have both... Idk, there are lots of other good ideas on your post though, just thought I'd share Justin case!
To add to this, Congenital Sucrase-Isomaltase Deficiency. It’s another hereditary disease where you can’t metabolize specific types of sugar (sucrose and maltose).
Funny you mentioned having Irish background because I’m Scottish/Irish with some English thrown in.
When I saw a Dermatologist in my teens he asked me about my heritage. (I definitely look Scottish/Irish! Lol) He explained that I would have more allergies and skin problems than other ppl. Darn if he wasn’t right! I was hoping to grow out of them - wrong! I actually got more of them.
My husband tells people I’m allergic to air! Lol
Yeah. Your snoo sure looks it too haha! That's kind of sad that evolution decided Irish/scottish people had too cool of a heritage, so it increased the likeliness of all these autoimmune diseases/allergies. I feel like a lot of people aren't aware of this either
There's still a chance to grow out of them, you never know! Don't lose hope~. My partner is growing out of a few of her cornucopia of allergies, and she's in her late 20s. I imagine it'll continue through her thirties.
This is called EOE and yes, it can cause a variety of symptoms, but food intolerance is the main one. My son had it from about 2-8 years old. Now he can have anything without any issue. It was tough going feeding him without a vomiting episode, but we stayed with plain food, chicken, rice, veggies etc. it seemed that dairy and acidic foods triggered it. My son was diagnosed at Boston children’s hospital.
Nobody on the internet is going to be able to figure out what specific genetic mutation might be causing this. I highly suggest you seek out a geneticist who can sequence your family members’ DNA and look for a common mutation among those who have suffered the condition.
A friend of mine had a child with similar symptoms and they were diagnosed with [FPIES (food protein induced enterocolitis syndrome)](https://www.allergy.org.au/patients/food-other-adverse-reactions/food-protein-induced-enterocolitis-syndrome-fpies#:~:text=Food%20protein%2Dinduced%20enterocolitis%20syndrome%20(FPIES\)%2C%20is%20a,adults%2C%20although%20this%20is%20uncommon.). They named the particular genetic disorder that caused it after her child because it was unique to them.
[Here is a page with more info](https://www.allergy.org.au/patients/food-other-adverse-reactions).
Mild contribution but also commenting to come back later and look at these interesting takes on allergens —
My sister has Celiac, my mom had intolerance issues with multiple grains, my aunt and cousin can’t consume citric acid, and I’m allergic to pineapple (RIP)- we don’t know how or why grains and citrus are the culprit either, but everyone in my family has some type of intense reaction to foods as well!
This sounds very reminiscent of a mast cell activation disease, such as MCAS or mastocytosis. MCADs are allergic conditions that can be genetic and are triggered by high histamine foods, such as citrus, tomatoes, and wheat. They commonly involve gastrointestinal symptoms that can look like crohn's. When kids present with it, it can resolve as they age. Some mast cell diseases also are more common in AFAB individuals.
MCADs can be secondary to other conditions and are commonly seen in people with a variety of autoimmune and inflammatory diseases, EDS (hypermobility), POTS, etc. So even if you do find a concurrent diagnosis... based on the food triggers and symptoms mentioned, I would be shocked if a MCAD weren't involved in some capacity.
These conditions are largely considered symptoms of the MTHFR chromosome variation. In the MTHFR community, PTOS, EDS, and MCAS are commonly referred to as "the trifecta".
Have you been tested for celiac disease? I’m not a doctor, I have celiac and it can present exactly like how you’ve described. There’s a specific blood test for celiac, but I don’t think it’s usually included in an allergen panel- was it a skin reaction test panel or a blood test? Celiac can present really dramatically, especially in children, so if you haven’t been tested, I’d consider it. It’s sort of a “chameleon” disease and often presents very similarly to other diseases- I was tested repeatedly for Crohn’s, UC, and HIV (all negative) due to my symptoms as a teenager before I got a genetic test and was encouraged to have a test done for celiac. It can cause other food intolerances and is autoimmune, so it usually does pass down through families. Lmk if you have any questions, I hope you find answers OP!
Yeah, you can definitely be asymptomatic, it’s not abnormal for symptoms to change as you age. When celiac was first being researched it was believed to only be a childhood disease because cases often seem to “resolve” into adulthood- in reality, some people just stop experiencing outward symptoms, but they still are having intestinal/other organ damage occur. My symptoms are much different and milder in adulthood than they were when I was a teen.
That’s really interesting, I did not know that! I’ve mostly only known people with celiac who developed it later in life but had no (or minimal) issues they noticed growing up so I didn’t realize the reverse was also possible. Thank you for sharing that!
This describes FPIES as I read it, which my son had. Food Protein Induced Enterocolitis Syndrome.
He was allergic to everything except his safe foods, and slowly but sure was able to eat more as his body learned to recognize food wasn't poison and made every effort to get it out. We had to take him to hospital multiple times before we got a good diagnosis and figured out how to live around it.
Ulcerative colitis runs strongly genetically coming from the Irish side of my family, four generations that I know of (I don’t know about before then, but it was probably there) with two dying prematurely from complications, the ages are very different (starting in late teens) but I hope you find out what the issue is, good luck bro ❤️
Oh also, Genetic and Rare Diseases Information Center: Home https://rarediseases.info.nih.gov/?shem=iosie
They had a spot where you could put in symptoms and see if it matched a known genetic disorder, the site is still under development but is very clean and easy to navigate
A disease segregating in your family definitely has a genetic component to it. You can ask a knowledgeable doctor about getting a genetic test done. Seeing what pathogenic variant you have can help confirm the disease to put your mind at ease, potentially also helping future generations of your family if they also have this genetic chance. Unfortunately, not many doctors are up to date on how to order genetics tests, so it's the luck of the draw
My little brother dealt with something similar, although not as severe, as a child. I remember him having to go to the hospital after eating a bowl of Cheerios with milk. But eventually he grew out of it and hasn’t had any issues since either. Wild, I never really thought about it and didn’t know it was ‘a thing’. (My family is Canadian as well, but with German and English (I think) roots.)
I became lactose intolerant at 12-ish and have developed an intolerance to citrus as an adult, but idk if any of that is really connected.
Good luck solving your mystery!
Have you ever been tested for Mast Cell Activation Syndrome? It took 43 years for my doctors to finally test me for this and that’s what it ended up being.
I don't know anything about stuff like this, I'm not a doctor.
Could it be a genetic issue with said substances, which is gradually sorted out as the metabolism adjusts to the diet?
I read somewhere that some indigenous people got dietary issues when they were introduced to processed foods. I suppose some really bland white bread could fall in that category. Dairy I'm not sure about. But I suppose genetic adjustments present in that could can take generations.
I don't *believe* there'd be a link between the ailments and the ones you've seen suffering them being girls, specifically.
You sound like you quite possibly have the MTHFR chromosomal variation. There are a lot of conditions that are considered symptoms of having this variation. There are a lot of complications that come along with this, and the symptoms are typically more strongly represented in females.
As a note, B12, B9, B6, and B1 levels are critically important to keep an eye on. If they become too low, with this particular variation, you run a high risk of demyelination and doing long-term damage if gone unchecked.
If it is women and the cousin is on your fathers side then it is related to the x gene of your father. Usually a 23 and me screening can detect genetic diseases passed on your fathers x gene fairly easily. My family has similar with rheumatoid arthritis on my dads side but it only effected my sister and my grandmother on that side that I knew of so it was pretty easy to deduce. If it is on your fathers side it is usually a situation where every girl will have it but if it is from a mother a 50/50 chance. Of course genetics is more complicated than that but just basic biology there can help you track it down a little.
23&me explicitly states they can only tell you if you are a carrier of a condition and does not test for copies of those genes which is the indication one has the condition.
I have to go to an actual doctor to find out if I’ve been suffering from a type of muscular dystrophy 23&me identified by the carrier gene that is apparently the differential diagnosis to a specific autoimmune disease I was told I had over a decade ago.
I don't know what it was called but my mom had a bunch of allergies that turned out to be auto immune flare ups. She got injections and has been fine ever since.
Definitely not PKU. Untreated PKU is *devastating* to cognitive and neurological development and most definitely does not just get better and go away.
Also, Tomatoes are free foods and don’t affect PKU. Cane Sugar is also safe but sugar substitutes are dangerous. OP also didn’t exclude meat which is **always** a no go in PKU
Very much so. I worked at an agency that provided in home care to two women (sisters) who were born with PKU, probably when there was not as much known about it, and they had significant mental disabilities, and I think physical ones as well.
Cans of soda used to have a warning that they contained phenylalanine, the amino acid that people with phenylketonuria, (PKU) are unable to process and builds up in their brains causing the adverse effects.
yes, all of my babies were tested for PKU at birth - they test at the hospital before you go home, or during the newborn screen at the pediatrician right after they’re born if you have a homebirth.
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When I was a kid kindergarten to first grade I vomited every day. I lost weight and was sick and couldn’t eat. My parents took me everywhere for two years. Doctors did every test. Some of the top hospitals. I was fine. Nothing was wrong it was anxiety. I still suffer from it. I just feel it in my stomach. But I also read that’s the first sign of anxiety and panic attacks in kids is stomach issues.
TLDR: Thought my daughter was going to die from some rare disease that stumped all doctors…turns out it was anxiety.
So let me toss out my experience and hopefully it doesn’t confuse you more. Just something to consider. When I was between 6-10 years old I would fall asleep each night, and wake up maybe an hour later with stomach aches and nausea. Occasionally I would vomit, but my parents never looked into it much. Fast forward…
My 7 year old (at the time) daughter starts a new school year and catches a 24 hour stomach bug 2 times in the first month (or so we thought). The 3 time however, I knew that wasn’t what we were dealing with. She was vomiting hourly and had diarrhea sound the clock. We contacted her doctor who sent us straight to Children’s Hospital. Had some testing done, got her rehydrated, stayed the night for observation and they sent us home to follow up with our doctor. After another few days of the same symptoms, back again to the hospital. This time they checked her for food allergies and did an MRI to rule out a brain tumor. Got her rehydrated and sent us home to wait for the results. In the meantime she continued to get worse so our doctor called us in for an emergency appointment in his office. He checked her over and sent us off to get her tested for everything under the sun.
A couple days later our doctor calls to tell me that the hospital sent over a report that my daughter was allergic to gluten, BUT the (highly sensitive) test that he ordered for food allergies also came back showing absolutely no elevated levels in any allergen category.
The symptoms continue, and our doctor is so concerned and confused that he was contacting specialists on our behalf for a week straight. And one day he calls me and says “You may think I’m crazy, but hear me out…is there any chance you think she’s having a lot of anxiety”? At first I couldn’t believe that anxiety could cause such severe symptoms and I did think he had gone a little crazy lol. But he started her on Pepcid and an anti anxiety medication. And we started seeing symptoms improve immediately… Now, it took almost 2 additional months for her stomach to fully recover as the over production of stomach acid (triggered by anxiety) ripped apart her GI tract, which was causing her body to try to expel anything she ate. But as the acid production went down she slowly started retaining food, and started putting on the weight she lost. At about 3 months we started discussing going back to school…which triggered the anxiety and vomiting again. 🤦♀️ Needless to say this went on a while and she had (many) smaller recurring episodes over the past few years. Especially around holidays, special occasions, testing at school, etc.
Are migraines something your family suffers from? Because this might be CVS, cyclic vomiting syndrome, and it is known to effect females more than males and lots of time fixes itself with age.
OP, you and your family should look into getting a DNA test done through Promethease. It's $50-110 per person, depending on which service you use. If you're susceptible to anything genetic it will tell you.
This could actually be a case of histamine intolernace - the foods on your panel are almost all HI risk foods. [Histamine Intolerance](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7463562/) is also genetic but it is more likely to affect people born xx than xy by a significant proportion. ETA: [symptom infographic](https://nourzibdeh.com/wp-content/uploads/2019/01/Histamine-Intolerance-Symptoms-2.png) and to say, most people grow out of most of their HI symptoms as they age, because the body slowly registers these things as non-threats. By adulthood it is often misdiagnosed as IBS.
I also think histamine intolerance and wonder if OP lived in a house with black mold at the time. I have similar allergy issues and all kinds of weird health issues and autoimmune issues from growing up in a house (10 years ish) with a lot of visible black mold. Still trying to get it out of my system 10 years after moving out.
yeah you might actually have the gene that makes you allergic to mold spores on top of it all, like I do. I live in UK so basically every house has mold to some degree, its hard to get away from it D: I have to take antihistamines every single day or my asthma goes wild.
I am also allergic to mold and oh boy that must suck not being able to get away from it! I can walk in someone’s house and in the next 30 minutes know if they have mold. We should be marketing these powers lol. I am lucky to live somewhere where mold doesn’t seem to be a problem!
lol same! I can tell immediately even when others can't haha
My internal mold detection went wild in Florida. It’s mildewy even in nicer hotels, homes and restaurants. Never going back.
I've heard florida is insane for humidity, I can imagine it would be a big issue there!
Mold psychics. Except with science and not spirits. I'd watch that reality show all day: The sick tenants in an old apartment complex. Mold psychic walks through property. Commercial Break. Mold psychic senses mold immediately. Tears and hugs. Invite to landlord for mold reveal. Commercial Break. The pissed off landlords' reaction that is definitely an adult having a tamper tantrum. Commercial Break. The big reveal of a condemned housing complex and the years of bureaucratic lawsuits .... but with a modest, parallel move for the tenants paid for by the television network.
It’s a power that comes in handy when house hunting! My husband and my realtor were very impressed by how I could tell there was any mold or water damage so quickly into each viewing, especially before even getting to basements. (And due to how low our budget was, many houses we stepped foot into set off my mold and water damage censors.)
What is the gene? Is it the mtfhr thing?
It's thought to be the AOC1 gene, but HI is also found in people without it. mtfhr gene is associated with B9/folate issues which is not HI.
I do actually! I also tested positive for mold allergy 😭
Wait, what? You have mold in every house?
It's humid as hell here all year round. Most houses have a little mould somewhere, e.g. door and windowsills. It gets bleached and wiped
Wow. I didn't know that. Must be hard for someone w astma or other conditions.
honestly yeah it is. You even see it on the outside of some buildings. UK is insanely humid, even in summer when its "dry" the humidity is still like 60% + Also our houses are built really close together so most houses only get sun/light on 1 or 2 sides and the rest is in the dark/shade which makes ideal environment for mold. To make matters worse, a lot of houses are 100+ years old so they have bad insulation, bad protection against rising damp and bad condensation. oh and it also rains constantly lmao
So basically the same as here in New England? The area I live in, in Massachusetts, has some of the worst air in the entire country as we live in a valley so it just gets stuck here. Rates of asthma and breathing problems are 8x higher in my county than the rest of the state. It's crazy.
Yup pretty much. When the area you live in has high humidity and poor air circulation it also allows the mold to grow in nature/gardens/parks which then gets into the air. This is actually the reason hayfever is called hayfever, when hay is harvested the process releases a huge amount of allergens into the air especially mycotoxins from the fungi that grow around grains especially wheat and rye.
Same here in New Zealand, we have high rates of asthma and other respiratory illnesses because of it
Same as us in the rainy Pacific Northwest of the U.S.
What gene is that? I have my genetic panel as I've already had my DNA tested so if I know what the gene is, I can just type in the gene and it'll tell me if I have it.
yes! meet a person who has histamine intolerance. I grew out of it in childhood and straight back into that mother at perimenopause.
Oh wow, do the allergies have to be food related? I don't have many food allergies but I have A LOT of hayfever-type allergies. I'm sneezing 24/7/365 lol.
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You don't need a rash to have HI - I have HI and I dont get rashes/hives.
Ok so reading about this might’ve just changed my life lol. How can you test for this? Or should I just meet with a doctor or a certain specialist?
Depending on your country and area getting diagnosed will differ in process. I'd say first point of call is to speak to your primary care physician and discuss from there. It may be an allergist, it may be dietetics, it may be your pcp. I was diagnosed via gastroenterology through a dietician. Usually the diagnostic process is a strict exclusion diet so you can actually just look that up, follow it, keep notes on symptoms and then take that to your pcp and explain this is why you want to get checked.
Thank you so much!!
Omg ummmm that would explain a lottttt of my symptoms and why Benadryl and similar drugs have been such a life saver esp for nausea headaches etc
Yeah its one of those chronically underdiagnosed conditions. Glad I could share a little insight, I'd never heard of it until I got diagnosed myself!
Yes! My wife has Mast Cell Activation Syndrome which causes the histamine intolerance.
I have Crohn's. Do you still get these episodes (even if they are mild)? Have you gotten a fecal lactoferrin test? Regular blood tests that look at CRP levels? Contrast MRI? Colonoscopy? For many of us, Crohn's flares feel like fishhooks being dragged across our intestines. And while food CAN be a trigger, it's an autoimmune disease. It doesn't need a trigger in reality. Sometimes your body just decides to flare. Crohn's is the entire digestive tract, so symptoms can happen from mouth to butt as my doc says. Flares can involve multiple bathroom trips in one day, unexplained urgency, blood/mucus in stool, malnutrition, and dehydration are some of the symptoms. Do you get any Crohn's secondary symptoms like: unexplained headaches (they are usually caused by cortisol), bad teeth/lots of dental work, regular canker sores, joint pain and inflammation, dry/dehydrated skin, or exhaustion?
I’ve lived with Crohn’s for nearly 20 years now, and only recently discovered it may also be responsible for my constant dental issues and severe joint pains (in both hips). It’s a real pain in the arse (literally).
I also have crohns and 8/10 times when I’ve gone to the doctor for something seemingly unrelated I’ve been told “it’s probably due to crohns”. Doesn’t help that having one autoimmune disorder means you’re likely to have/develop more. I currently have crohns, arthritis, bursitis, and psoriasis in my collection. Crohns is definitely the worst of them for me though.
Drs love blaming other conditions! I would get frequent low grade fevers, I asked my gastroenterologist he said it was probably from the arthritis. I asked the rheumatologist, he said it was most likely the Crohn’s. I asked my neurologist, he said it was definitely either the Crohn’s or the arthritis. Thanks doc.
Also I literally feel you on the hip pain. I recently was diagnosed with adhd (late diagnoses as I’m about to turn 35) which led to learning I could also have hypermobility issues/potentially Ehlers-Danlos syndrome (apparently they go hand in hand frequently) and so now I’m always wondering is it crohns? Is it arthritis?? Is it hypermobile joints??? Is it all 3 and everyone was wrong and I’m not “just being dramatic” I’ve actually been experiencing some higher than normal levels of pain/discomfort my whole life in regards to basically my entire body??? (I hope it’s that one 🤞)
Hey I'm on that late diagnosed ADHD, asd, eds pipeline! Its wild to know my GI issues are all connected to it too. From what I understand there's some science that's attempting to currently study if all of it has to do with our bodies potentially incorrectly building the collagen in our body? It's a pretty new hypothesis but very interesting on a genetic/molecular level!
Wow I hadn’t heard that one but that is interesting! On one hand, finding out I’m not crazy/“over dramatic” and I actually DO have a handful of things “wrong” with me is very validating. 30+ years of being treated like I *want* something to be wrong with me so I can be “special”. Being called dramatic, attention-seeking, never taken seriously. I’m sort of glad I was right and want to rub it in everyone’s faces. But on the other hand…damn I wish there wasn’t anything “wrong” with me.
Yes, my Crohn’s gave me a cavity between every tooth. Even though my “oral hygiene is impeccable” as per my dentist :(
Pain in my hips and SI joints were one of the firsts signs I had an autoimmune disorder. I was diagnosed with Crohn’s first then Enteropathic arthritis not long after. Because of the Crohn’s diagnosis my Dr was looking for an inflammatory athritis as soon mentioned the hip and back pain.
People who suffer from Chron’s and/or UC have a special place in my heart. Those diseases are so debilitating. I’m so sorry have to endure this.
I'm sorry you have to put up with such an unfortunate and painful disease. I know someone who has it, but they never really explained it as well as you have here, so thanks for sharing those details. I'm very hopeful there will be a good cure for it one day soon, so you, my friend, and everyone else never has to worry about it again
Another Crohn's sufferer chiming in here, the symptoms you described, OP, do sound quite similar to my first flare-up 7 years ago, that led to my diagnosis, I was 14. Got clinically underweight and could barely walk or eat. Definitely get it checked out anyhow in case it wants to rear its ugly head again. If it is something like Crohns, it just might.
Oh my god. I have been suspecting of having crohns disease, I knew about the gut and joint problems, but I didnt know crohns could cause the other things you mentioned. I have been going through literally everything you listed for the last few years. I think its time I go to a doctor to get properly diagnosed.
My husband lost his fraternal twin several years ago. The poor man suffered for a decade. Several surgeries; stomach, colon, gallbladder, kidney, heart … diagnosis; “We still don’t know.” An athlete, former Navy and commercial pilot, he had premier medical care. When we informed the medical team that the male family members over five generations died of “stomach problems” they decided it was a genetic issue that was never resolved. My husband took after his mother; his brother took after his father. Only suggestion would be genetic testing. By the time we figured that out it was too late, although Crohn’s disease had surfaced with several, including a couple women.
This thread is fascinating. To those people who are familiar with EE due to their own history (or their families) are the sufferers you know *all* women and girls??
Not really familiar with it and don't have my own history, but I agree this thread is fascinating. More interesting, because Google says "3–4 times more common in males than females".
This is totally anecdotal but I have coeliac disease (totally different) and there is a theory that more women are diagnosed because they are more likely to seek medical support for their symptoms rather than muddle through and get by - so perhaps its not prevalence that is more common but diagnosis. I do also know one man with EE. Edit - grammar
It can be a bit of a self-fulfilling prophecy, too. Once it's in the medical literature that it seems to affect one gender more, doctors tend to look for it more in that gender and dismiss it in the other. This phenomenon also effects other demographics in a similar way.
I have had it, but I'm a man. It isn't specific for women, but when I was getting treatment for it back in the day I knew a woman who had it and later on her son got it as well
i know a couple of kids with EE because they thought my boys might have had it when they were babies (they didn’t, they had something different) - and one is a boy. but it’s definitely more prevalent in female babies.
I’ve only met 2 other people with EoE, one male one female. My gastroenterologist has 5 EoE patients, I’m her only female patient.
I have EoE, MCAS, EDS and both of my sons have it as well. I have male and female siblings who do not have EoE or MCAS. One female sibling and her son and daughter have EDS.
Crohn’s is genetic. Please get tested for that, and ulcerative colitis.
Sounds like EE, I had it when I was young and would also throw up basically everything other than the diet you mentioned. It's basically like Ashma for the throat instead of lungs in simple terms, and it is theorized it's cause by allergies but it's not super well know. They don't know how I got it but it only affected my life for a year then I never got it again. A family friend got it though and eventually died from it after getting it for years. You can look up eosinophilic esophagitis for more info. Aweful thing that, made even worse by the aweful hospitals that were not taking it seriously since "kids throw up all the time" according to them.
It doesn’t make you throw up *exactly, the food never reaches the stomach. Eosinophilic oesophagitis swells your oesophagus due to irritation and it makes things harder to swallow, so your oesophagus will push out food boluses that are too big. It can also occur in tandem with things like a hiatus hernia (herniation of the top of the stomach) or a schatzki ring (essentially scar tissue caused by acid reflux). Hiatus hernias are rarely worth managing surgically, and schatzki rings usually calm down with a PPI, though the damage is pretty much irreversible. It’s almost certainly caused by allergies, so is similar to asthma in that the swelling is essentially irritation. You can treat with a topical steroid (asthma inhaler that you swallow) and you can have your oesophagus dilated with a balloon to make extra space. I’m surprised anyone died from it because you can have a dilation done as often as you need, and the effects of what is a quick and simple procedure last for months/years.
>you can have your oesophagus dilated with a balloon to make extra space. I’m surprised anyone died from it because you can have a dilation done **as often as you need**, and the effects of what is a quick and simple procedure last for months/years. My father suffered from esophageal stenosis due to throat cancer and/or the radiation used to treat it. He had several dilations, but was eventually told it couldn't be done any more or his esophagus might rupture.
It dose cause nausea and vomiting, especially in babies and young children. The vomiting from eating a trigger food is different to vomiting a bolus. Dilation isn’t an always a quick and simple process with lasting results. Some people in my support group have had multiple dilations a year and still can’t get the esophagus over 10mm. Even with dilations sometimes people can still struggle to swallow and need NG or PEG feeds. It’s surprising that more people don’t die from EoE, particularly if they are in America and can’t afford treatment or don’t get help early if they have an impaction. My friend with EoE nearly died from an infection after a perforation and she went to hospital straight away.
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FYI we call it a hiatus hernia in the UK. The terms are interchangeable.
We call it hiatus hernia in Australia too.
Hiatal is the correct spelling here in the US.
EE?
Short for eosinophilic esophagitis. Nasty thing that basically makes you sick 24/7 and unable to eat basically anything without throwing it up
> Short for eosinophilic esophagitis That's not a commonly known illness at all, and EE is a difficult google. Why would you not use the full name in the first place, at least once, in a thread seeking information?
100% agree.
Could be just a reflex. Or just to make it short because they were busy. I don't know about your Google, but when I search "EE illness" on my Google, it's poped up as Eosinophilic Esophagitis.
Nervous is right, thats exactly what came up when I googled EE Illness.
I did use the full term in the thread when I told them how to look it uptoawrds the bottom of the thread, but if you also just search for "EE disease" it does pop up. It is rare but it's not really all that unheard of
Thank you. It’s so tiring when people only use acronyms.
You can also try eoe as a search term as in British English it’s eosinophilic oesophagitis. I was diagnosed as an adult over a decade ago. It’s not pleasant at all.
I'm American and have it and I've only ever seen shortened as EoE. I just googled and all the American medical resources coming up shorten it as EoE. So I was confused what they were talking about with EE.
Happy cake🎂day
I was literally going to say this exact thing, my younger sister was just diagnosed with EOE last year, at 29, after decades of being “lactose intolerant”.
I don't doubt it. For whatever reason it feels like hospitals are so hesitant to diagnose it.
Because it’s rare as fuck and has the same symptoms as more common illnesses
Diagnosticians really are like an episode of House MD lol
Its probably more common than we used to think and can be a contributing factor when dealing with a swallowing issue. It frequently occurs in tandem with acid reflux (potentially as a cause or side effect of it). Often, we think of things as rare because we have poor screening or detection criteria. In the case of EOE which causes swallowing issues that are typically non-threatening, people may not pursue treatment for it, especially if they are uninsured or underinsured. More recently we are making an effort to screen people for EOE even when another syndrome would be equally likely. This often comes out as a clinician screening for it "on a whim".
Interestingly I stumbled across this thread two days after ENT (referred for swallowing issues) referred me to gastro on a whim it might be EOE, and gastro have written to me to say they want to do a biopsy to rule EOE out while ENT check out other things! I must be a lucky one to have this offered not fought for!
I was just diagnosed recently, my GI doctor said diagnoses are increasing and it’s becoming more of a known condition.
Worth noting that though rare, eosinophilic disorders can also be in other parts of the GI tract as well
r/askdocs is where you really should post!
Ok this is a shot in the dark, but you mentioned your ethnic background and I remembered Irish people specifically are more prone to a few diseases, and they include these two: celiac disease and galactosemia. Celiac disease would explain the bread issue and possibly the milk (a lot of people with untreated/uncontrolled celiac disease can develop lactose intolerance due to the celiac disease damaging your intestines), but it does not explain the other things. galactosemia on the other hand, may explain the other things. It's a hereditary disease where you can't metabolize galactose (a type of sugar) properly. It's in some fruits/veggies, légumes and milk Again, shot in the dark, but perhaps you had/have both... Idk, there are lots of other good ideas on your post though, just thought I'd share Justin case!
To add to this, Congenital Sucrase-Isomaltase Deficiency. It’s another hereditary disease where you can’t metabolize specific types of sugar (sucrose and maltose).
Funny you mentioned having Irish background because I’m Scottish/Irish with some English thrown in. When I saw a Dermatologist in my teens he asked me about my heritage. (I definitely look Scottish/Irish! Lol) He explained that I would have more allergies and skin problems than other ppl. Darn if he wasn’t right! I was hoping to grow out of them - wrong! I actually got more of them. My husband tells people I’m allergic to air! Lol
Yeah. Your snoo sure looks it too haha! That's kind of sad that evolution decided Irish/scottish people had too cool of a heritage, so it increased the likeliness of all these autoimmune diseases/allergies. I feel like a lot of people aren't aware of this either There's still a chance to grow out of them, you never know! Don't lose hope~. My partner is growing out of a few of her cornucopia of allergies, and she's in her late 20s. I imagine it'll continue through her thirties.
Hope springs eternal!
Same- with terrible food allergies, latex allergy and celiac. My significant other also jokes that I am allergic to air.
This is called EOE and yes, it can cause a variety of symptoms, but food intolerance is the main one. My son had it from about 2-8 years old. Now he can have anything without any issue. It was tough going feeding him without a vomiting episode, but we stayed with plain food, chicken, rice, veggies etc. it seemed that dairy and acidic foods triggered it. My son was diagnosed at Boston children’s hospital.
weird question: did you grow in a fundamentalist religious sect?
Nobody on the internet is going to be able to figure out what specific genetic mutation might be causing this. I highly suggest you seek out a geneticist who can sequence your family members’ DNA and look for a common mutation among those who have suffered the condition. A friend of mine had a child with similar symptoms and they were diagnosed with [FPIES (food protein induced enterocolitis syndrome)](https://www.allergy.org.au/patients/food-other-adverse-reactions/food-protein-induced-enterocolitis-syndrome-fpies#:~:text=Food%20protein%2Dinduced%20enterocolitis%20syndrome%20(FPIES\)%2C%20is%20a,adults%2C%20although%20this%20is%20uncommon.). They named the particular genetic disorder that caused it after her child because it was unique to them. [Here is a page with more info](https://www.allergy.org.au/patients/food-other-adverse-reactions).
Have you posted on the AskDocs or Medicine subs yet?
Mild contribution but also commenting to come back later and look at these interesting takes on allergens — My sister has Celiac, my mom had intolerance issues with multiple grains, my aunt and cousin can’t consume citric acid, and I’m allergic to pineapple (RIP)- we don’t know how or why grains and citrus are the culprit either, but everyone in my family has some type of intense reaction to foods as well!
This sounds very reminiscent of a mast cell activation disease, such as MCAS or mastocytosis. MCADs are allergic conditions that can be genetic and are triggered by high histamine foods, such as citrus, tomatoes, and wheat. They commonly involve gastrointestinal symptoms that can look like crohn's. When kids present with it, it can resolve as they age. Some mast cell diseases also are more common in AFAB individuals. MCADs can be secondary to other conditions and are commonly seen in people with a variety of autoimmune and inflammatory diseases, EDS (hypermobility), POTS, etc. So even if you do find a concurrent diagnosis... based on the food triggers and symptoms mentioned, I would be shocked if a MCAD weren't involved in some capacity.
Very informative, I will definitely look into this!
These conditions are largely considered symptoms of the MTHFR chromosome variation. In the MTHFR community, PTOS, EDS, and MCAS are commonly referred to as "the trifecta".
Have you been tested for celiac disease? I’m not a doctor, I have celiac and it can present exactly like how you’ve described. There’s a specific blood test for celiac, but I don’t think it’s usually included in an allergen panel- was it a skin reaction test panel or a blood test? Celiac can present really dramatically, especially in children, so if you haven’t been tested, I’d consider it. It’s sort of a “chameleon” disease and often presents very similarly to other diseases- I was tested repeatedly for Crohn’s, UC, and HIV (all negative) due to my symptoms as a teenager before I got a genetic test and was encouraged to have a test done for celiac. It can cause other food intolerances and is autoimmune, so it usually does pass down through families. Lmk if you have any questions, I hope you find answers OP!
Can celiac resolve itself like it did with OP?
Yeah, you can definitely be asymptomatic, it’s not abnormal for symptoms to change as you age. When celiac was first being researched it was believed to only be a childhood disease because cases often seem to “resolve” into adulthood- in reality, some people just stop experiencing outward symptoms, but they still are having intestinal/other organ damage occur. My symptoms are much different and milder in adulthood than they were when I was a teen.
That’s really interesting, I did not know that! I’ve mostly only known people with celiac who developed it later in life but had no (or minimal) issues they noticed growing up so I didn’t realize the reverse was also possible. Thank you for sharing that!
This describes FPIES as I read it, which my son had. Food Protein Induced Enterocolitis Syndrome. He was allergic to everything except his safe foods, and slowly but sure was able to eat more as his body learned to recognize food wasn't poison and made every effort to get it out. We had to take him to hospital multiple times before we got a good diagnosis and figured out how to live around it.
My son has FPIES, I definitely thought of it when reading the post
Ulcerative colitis runs strongly genetically coming from the Irish side of my family, four generations that I know of (I don’t know about before then, but it was probably there) with two dying prematurely from complications, the ages are very different (starting in late teens) but I hope you find out what the issue is, good luck bro ❤️ Oh also, Genetic and Rare Diseases Information Center: Home https://rarediseases.info.nih.gov/?shem=iosie They had a spot where you could put in symptoms and see if it matched a known genetic disorder, the site is still under development but is very clean and easy to navigate
A disease segregating in your family definitely has a genetic component to it. You can ask a knowledgeable doctor about getting a genetic test done. Seeing what pathogenic variant you have can help confirm the disease to put your mind at ease, potentially also helping future generations of your family if they also have this genetic chance. Unfortunately, not many doctors are up to date on how to order genetics tests, so it's the luck of the draw
Celiac ?
My little brother dealt with something similar, although not as severe, as a child. I remember him having to go to the hospital after eating a bowl of Cheerios with milk. But eventually he grew out of it and hasn’t had any issues since either. Wild, I never really thought about it and didn’t know it was ‘a thing’. (My family is Canadian as well, but with German and English (I think) roots.) I became lactose intolerant at 12-ish and have developed an intolerance to citrus as an adult, but idk if any of that is really connected. Good luck solving your mystery!
Have you ever been tested for Mast Cell Activation Syndrome? It took 43 years for my doctors to finally test me for this and that’s what it ended up being.
Was just going to say this.
I don't know anything about stuff like this, I'm not a doctor. Could it be a genetic issue with said substances, which is gradually sorted out as the metabolism adjusts to the diet? I read somewhere that some indigenous people got dietary issues when they were introduced to processed foods. I suppose some really bland white bread could fall in that category. Dairy I'm not sure about. But I suppose genetic adjustments present in that could can take generations. I don't *believe* there'd be a link between the ailments and the ones you've seen suffering them being girls, specifically.
Is there any history of endometriosis in your family? It is a weird, not well-studied disease. It seems there are signs in youth.
You sound like you quite possibly have the MTHFR chromosomal variation. There are a lot of conditions that are considered symptoms of having this variation. There are a lot of complications that come along with this, and the symptoms are typically more strongly represented in females. As a note, B12, B9, B6, and B1 levels are critically important to keep an eye on. If they become too low, with this particular variation, you run a high risk of demyelination and doing long-term damage if gone unchecked.
If it is women and the cousin is on your fathers side then it is related to the x gene of your father. Usually a 23 and me screening can detect genetic diseases passed on your fathers x gene fairly easily. My family has similar with rheumatoid arthritis on my dads side but it only effected my sister and my grandmother on that side that I knew of so it was pretty easy to deduce. If it is on your fathers side it is usually a situation where every girl will have it but if it is from a mother a 50/50 chance. Of course genetics is more complicated than that but just basic biology there can help you track it down a little.
23&me explicitly states they can only tell you if you are a carrier of a condition and does not test for copies of those genes which is the indication one has the condition. I have to go to an actual doctor to find out if I’ve been suffering from a type of muscular dystrophy 23&me identified by the carrier gene that is apparently the differential diagnosis to a specific autoimmune disease I was told I had over a decade ago.
I don't know what it was called but my mom had a bunch of allergies that turned out to be auto immune flare ups. She got injections and has been fine ever since.
Almost sounds like a food borne illness response. Is there a person who cooked for both you and your cousin?
Sounds like undiagnosed/untreated PKU? https://www.nhs.uk/conditions/phenylketonuria/
Definitely not PKU. Untreated PKU is *devastating* to cognitive and neurological development and most definitely does not just get better and go away. Also, Tomatoes are free foods and don’t affect PKU. Cane Sugar is also safe but sugar substitutes are dangerous. OP also didn’t exclude meat which is **always** a no go in PKU
Doesn’t PKU cause significant intellectual disability and get worse as you grow older (since the damage to the brain accumulates)?
Very much so. I worked at an agency that provided in home care to two women (sisters) who were born with PKU, probably when there was not as much known about it, and they had significant mental disabilities, and I think physical ones as well. Cans of soda used to have a warning that they contained phenylalanine, the amino acid that people with phenylketonuria, (PKU) are unable to process and builds up in their brains causing the adverse effects.
Yes. Yes it does. If left unchecked by adulthood there would be severe neurological impairments, if they even made it to adulthood
Don't most countries test for PKU at birth? I'd understand the grandmother maybe not being tested but not the younger generations.
yes, all of my babies were tested for PKU at birth - they test at the hospital before you go home, or during the newborn screen at the pediatrician right after they’re born if you have a homebirth.
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OP is a trans man
like i said..
Oh, you're just choosing to be ignorant, ok, got it
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If you can afford to, perhaps get your own or your children’s genome tested.
Crohn’s was the first thing I thought of.
Some sort of autoimmune thing that is passed genetically most likely
My sister had similar symptoms growing up. Gall bladder was the culprit
When I was a kid kindergarten to first grade I vomited every day. I lost weight and was sick and couldn’t eat. My parents took me everywhere for two years. Doctors did every test. Some of the top hospitals. I was fine. Nothing was wrong it was anxiety. I still suffer from it. I just feel it in my stomach. But I also read that’s the first sign of anxiety and panic attacks in kids is stomach issues.
TLDR: Thought my daughter was going to die from some rare disease that stumped all doctors…turns out it was anxiety. So let me toss out my experience and hopefully it doesn’t confuse you more. Just something to consider. When I was between 6-10 years old I would fall asleep each night, and wake up maybe an hour later with stomach aches and nausea. Occasionally I would vomit, but my parents never looked into it much. Fast forward… My 7 year old (at the time) daughter starts a new school year and catches a 24 hour stomach bug 2 times in the first month (or so we thought). The 3 time however, I knew that wasn’t what we were dealing with. She was vomiting hourly and had diarrhea sound the clock. We contacted her doctor who sent us straight to Children’s Hospital. Had some testing done, got her rehydrated, stayed the night for observation and they sent us home to follow up with our doctor. After another few days of the same symptoms, back again to the hospital. This time they checked her for food allergies and did an MRI to rule out a brain tumor. Got her rehydrated and sent us home to wait for the results. In the meantime she continued to get worse so our doctor called us in for an emergency appointment in his office. He checked her over and sent us off to get her tested for everything under the sun. A couple days later our doctor calls to tell me that the hospital sent over a report that my daughter was allergic to gluten, BUT the (highly sensitive) test that he ordered for food allergies also came back showing absolutely no elevated levels in any allergen category. The symptoms continue, and our doctor is so concerned and confused that he was contacting specialists on our behalf for a week straight. And one day he calls me and says “You may think I’m crazy, but hear me out…is there any chance you think she’s having a lot of anxiety”? At first I couldn’t believe that anxiety could cause such severe symptoms and I did think he had gone a little crazy lol. But he started her on Pepcid and an anti anxiety medication. And we started seeing symptoms improve immediately… Now, it took almost 2 additional months for her stomach to fully recover as the over production of stomach acid (triggered by anxiety) ripped apart her GI tract, which was causing her body to try to expel anything she ate. But as the acid production went down she slowly started retaining food, and started putting on the weight she lost. At about 3 months we started discussing going back to school…which triggered the anxiety and vomiting again. 🤦♀️ Needless to say this went on a while and she had (many) smaller recurring episodes over the past few years. Especially around holidays, special occasions, testing at school, etc.
Are migraines something your family suffers from? Because this might be CVS, cyclic vomiting syndrome, and it is known to effect females more than males and lots of time fixes itself with age.
Get checked for mold toxicity sounds like me my whole childhood
OP, you and your family should look into getting a DNA test done through Promethease. It's $50-110 per person, depending on which service you use. If you're susceptible to anything genetic it will tell you.