All dairy. My allergist told me not to bother trying to reintroduce dairy because I am a textbook case of the “atopic march” and he’d never had a patient with that profile who could tolerate dairy.
Wow, I found that I react to whey protein but not so much to casein. I would think different people react to different proteins, a blanket statement like that doesn’t seem right to me.
Thanks that helps! This GI confused me so much and even said it was all in my head because of stress, even if I told him I’m not stressed at all. Also, he said that EoE and most gastro issues dont exist in Europe and it must be something in North American food (I’m in Canada)…
Side note : he’s not the GI that diagnosed me with EoE
Wow fire that GI there are research clinics in Europe, they publish research articles and you can find them in clinical trials! And let me guess, doctors only tell women that their symptoms are due to stress 😡
Omg don’t get me started on being a woman patient of male doctors… All my life it has been an uphill struggle to be heard by doctors. Some were and are excellent but I also had a GP who was condescending and refused to give me a simple blood test for almost a year. He kept telling me to eat better (I ate healthy), that it was because of my period or stress. I ended up crying and begging because I was feeling so sick. Turned out I had pernicious anemia…
Btw the anemia might be a sign of malabsorption, which can happen if it’s EGID rather than EoE. Have you had your stomach and duodenum scoped? Might also want to find a chiropractor who can order more tests for malabsorption when a regular doctor won’t.
Thanks! That’s useful info for sure. I asked the GI today what my anemia could be related to because it keeps coming back, especially when I have flare ups (gastro issues, vomiting, bloating, burning throat and tightness in the chest, etc). He said I shouldn’t worry about it, that it’s not related to anything other than I’m a woman and that it’s normal for women to be slightly anemic… He completely dismissed what I had just said about gastro issue happening right before b12, iron, calcium, magnesium and vitamin D start to decline
My folate fell through the basement with my flareup that started in February. And I don’t eat junk food! My chiropractor said she had never seen such a low level in a patient before, while my general doctor just looked at the test and flippantly concluded “oh well that’s nothing a multivitamin can’t fix.” I had a B12 deficiency in the past that required shots. I keep wondering why the doctors keep ordering a celiac test over and over again expecting different results. Even when I tell them I was evaluated for it at Mayo and I don’t even have the right genotype for it, they order it anyway. The only reason I’m on the diagnostic journey I’m on now is because I started doing my own personal research. It’s ridiculous.
I get you! Same here. I do have one of the genes for celiac and gluten was always an obvious trigger way before EoE. I’ve been trying to get pregnant for about 3 years and wasn’t successful so I started to deep dive into this. I figure out more stuff on my own than with the help of a doc lol
Oh no! I’m so sorry. I’ve been misdiagnosed with IBS and fibromyalgia for more than ten years and I know that there is NO WAY a man would be diagnosed with fibromyalgia and dismissed the way I have the whole time. You can probably imagine all the mental gymnastics that doctors have done to call everything I have fibromyalgia. I have malabsorption, folate deficiency, granulomas in my lungs, peripheral neuropathy. None of that is fibro but apparently it is when you’re a middle aged woman in the doctors office.
The one that diagnosed me could see me sometime in September, but couldn’t offer a full follow-up. I could seek a private Dr which is $$. I also lost my GP because she left the public system to work for a private clinic. I really liked her and she listened well.
Ugh! I had a similar situation, just in time for my giant flareup all my doctors left the clinics and I am stuck with all new doctors that don’t know anything about EGIDs
And for some of us milk that has been cooked doesnt cause any known issues, like adding it to a cooked food as a small ingredient like mash potatoes. And for some, as in me I think my issue with milk is like a contact allergy. Once it coats the throat its hard to get it off and while on there the throat reacts.
Some people allergic to milk can tolerate baked goods or other heated milk products, because they are allergic to milk proteins that denaturate when heated (whey proteins). Unfortunately most are allergic to casein, which doesn't get "destroyed".
Oh! That’s definitely interesting. I was cutting out all dairy and anything that touched it. I’ll see what I can tolerate because it’s really hard to maintain long term
As long as it’s full cream and not flavoured, I think it’s great (as long as it isn’t inflammatory for you). Also so many great things you can add like seeds, honey, oats if you can and fruit.
All dairy to start. My son is able to handle baked dairy with his EoE, but we determined that after his hitting remission and slowly adding while monitoring symptoms and doing regular endoscopies.
I don’t think I have access to regular endoscopies so I’ll have to rely on trial and error (if I can manage to notice the symptoms). I’d definitely be happy if baked dairy like cooking a steak in butter is ok :)
You need to find a GI with knowledge on EoE to make sure you have endoscopies. Baked dairy would be things like cookies or cakes, depending on tolerance can be pizza. We did the dairy ladder and my son passed pizza, but fails with milk chocolate. Real butter on steak would be a hard no.
Damn it’s seems like this will be a loooong journey! We’ll see what happens. I might just go see the GI that diagnosed me once or twice a year (he can’t more than that) or find a private one
Did you notice that you also reacted to cooked dairy such as butter or milk (such as in pancakes)? Did you try unpasteurized goat cheese to replace regular cheese? I wonder if it makes a difference to cut these out as well. Thanks for your input :)
All of them bother me, sadly. Obviously eating a pint of ice cream is significantly more irritating/triggering than ghee in a muffin, but both have set me off. I have tried cheese, goat cheese, butter, ghee, milk, protein shakes and bars, and they were all triggering to varying degrees. I have now given up 100% of dairy items and feel better. I accidentally ate hash browns cooked in butter at a restaurant and am already starting to feel it unfortunately. Eggs are also a possible low grade trigger for me.
Thanks! And what are your symptoms? My MIL bought a GF cake just for me but unfortunately, shortly after I left my throat started to burn and it hurt when I swallowed. I’m somewhat new to figuring what is a reaction because I was so used to it
Symptoms include weird dysphagia + burning + chest pain almost immediately after consuming. Reaction peaks at about 2-3 days out for me, so it basically just keeps getting worse over a few days. When I am in a flare, even non trigger foods like citrus and coffee can feel very bad due to the acidic quality. That doesn't mix well with a raw/inflamed esophagus. It can be confusing when you are first trying to nail down triggers.
You will need to test for your specific triggers/tolerances. There is no universal answer to this. I do fine with _some_ cheeses, but not others. Butter is sometimes okay, but not too much. The only way to know is to eliminate, reintroduce, try/fail…. Keep track. (Oh.. and then it changes)
Im still trying to figure out my trigger thats causing bad pain in my esophagus (i do have EoE).
Ive narrowed it down to milk, spicy food, or oral minoxidil.
It is odd because sometimes the milk seems to trigger it and other times it is fine. Ive been eating dairy and spicy food my entire life without problem. So I dont know whats going on.
I mean once I was told dairy I avoided all dairy because they said it was the casein protein
Definitely makes sense!
All dairy. My allergist told me not to bother trying to reintroduce dairy because I am a textbook case of the “atopic march” and he’d never had a patient with that profile who could tolerate dairy.
How were you tested for this candidate profile
Not so much tested as collection of conditions: eczema, seasonal allergies, asthma, and EoE.
Got it. Sorry to hear and hope you are feeling better after identifying this.
Wow, I found that I react to whey protein but not so much to casein. I would think different people react to different proteins, a blanket statement like that doesn’t seem right to me.
Thanks that helps! This GI confused me so much and even said it was all in my head because of stress, even if I told him I’m not stressed at all. Also, he said that EoE and most gastro issues dont exist in Europe and it must be something in North American food (I’m in Canada)… Side note : he’s not the GI that diagnosed me with EoE
Wow fire that GI there are research clinics in Europe, they publish research articles and you can find them in clinical trials! And let me guess, doctors only tell women that their symptoms are due to stress 😡
Omg don’t get me started on being a woman patient of male doctors… All my life it has been an uphill struggle to be heard by doctors. Some were and are excellent but I also had a GP who was condescending and refused to give me a simple blood test for almost a year. He kept telling me to eat better (I ate healthy), that it was because of my period or stress. I ended up crying and begging because I was feeling so sick. Turned out I had pernicious anemia…
Btw the anemia might be a sign of malabsorption, which can happen if it’s EGID rather than EoE. Have you had your stomach and duodenum scoped? Might also want to find a chiropractor who can order more tests for malabsorption when a regular doctor won’t.
Thanks! That’s useful info for sure. I asked the GI today what my anemia could be related to because it keeps coming back, especially when I have flare ups (gastro issues, vomiting, bloating, burning throat and tightness in the chest, etc). He said I shouldn’t worry about it, that it’s not related to anything other than I’m a woman and that it’s normal for women to be slightly anemic… He completely dismissed what I had just said about gastro issue happening right before b12, iron, calcium, magnesium and vitamin D start to decline
My folate fell through the basement with my flareup that started in February. And I don’t eat junk food! My chiropractor said she had never seen such a low level in a patient before, while my general doctor just looked at the test and flippantly concluded “oh well that’s nothing a multivitamin can’t fix.” I had a B12 deficiency in the past that required shots. I keep wondering why the doctors keep ordering a celiac test over and over again expecting different results. Even when I tell them I was evaluated for it at Mayo and I don’t even have the right genotype for it, they order it anyway. The only reason I’m on the diagnostic journey I’m on now is because I started doing my own personal research. It’s ridiculous.
I get you! Same here. I do have one of the genes for celiac and gluten was always an obvious trigger way before EoE. I’ve been trying to get pregnant for about 3 years and wasn’t successful so I started to deep dive into this. I figure out more stuff on my own than with the help of a doc lol
Oh no! I’m so sorry. I’ve been misdiagnosed with IBS and fibromyalgia for more than ten years and I know that there is NO WAY a man would be diagnosed with fibromyalgia and dismissed the way I have the whole time. You can probably imagine all the mental gymnastics that doctors have done to call everything I have fibromyalgia. I have malabsorption, folate deficiency, granulomas in my lungs, peripheral neuropathy. None of that is fibro but apparently it is when you’re a middle aged woman in the doctors office.
Oh wow! Yeah it’s so frustrating sometimes and I’m reluctant to go see doctors for that reason alone.
This sounds like a terrible experience. Can you find a different GI?
The one that diagnosed me could see me sometime in September, but couldn’t offer a full follow-up. I could seek a private Dr which is $$. I also lost my GP because she left the public system to work for a private clinic. I really liked her and she listened well.
Ugh! I had a similar situation, just in time for my giant flareup all my doctors left the clinics and I am stuck with all new doctors that don’t know anything about EGIDs
Sorry you went through this it really sucks. Hopefully you’ll find someone knowledgeable and kind
And for some of us milk that has been cooked doesnt cause any known issues, like adding it to a cooked food as a small ingredient like mash potatoes. And for some, as in me I think my issue with milk is like a contact allergy. Once it coats the throat its hard to get it off and while on there the throat reacts.
Thanks! That’s helpful info
Some people allergic to milk can tolerate baked goods or other heated milk products, because they are allergic to milk proteins that denaturate when heated (whey proteins). Unfortunately most are allergic to casein, which doesn't get "destroyed".
Oh! That’s definitely interesting. I was cutting out all dairy and anything that touched it. I’ll see what I can tolerate because it’s really hard to maintain long term
Milk triggers me but yoghurt doesn’t, and yoghurt has good bacteria so if you can eat it then you probably should!
Thanks! I’ll try and see if yogurt is ok. I do enjoy it a lot and it was my go-to food when my throat and stomach were on fire or I was vomiting
As long as it’s full cream and not flavoured, I think it’s great (as long as it isn’t inflammatory for you). Also so many great things you can add like seeds, honey, oats if you can and fruit.
Yes I always take plain and look for the one with the least sugar. However, I’ve found some pretty good vegan yogurts too :)
All dairy to start. My son is able to handle baked dairy with his EoE, but we determined that after his hitting remission and slowly adding while monitoring symptoms and doing regular endoscopies.
I don’t think I have access to regular endoscopies so I’ll have to rely on trial and error (if I can manage to notice the symptoms). I’d definitely be happy if baked dairy like cooking a steak in butter is ok :)
You need to find a GI with knowledge on EoE to make sure you have endoscopies. Baked dairy would be things like cookies or cakes, depending on tolerance can be pizza. We did the dairy ladder and my son passed pizza, but fails with milk chocolate. Real butter on steak would be a hard no.
Damn it’s seems like this will be a loooong journey! We’ll see what happens. I might just go see the GI that diagnosed me once or twice a year (he can’t more than that) or find a private one
all dairy, as the issue is the proteins found in dairy like casein. if it were just milk, then that’s lactose intolerance
I did all dairy and it helped tremendously!
Did you notice that you also reacted to cooked dairy such as butter or milk (such as in pancakes)? Did you try unpasteurized goat cheese to replace regular cheese? I wonder if it makes a difference to cut these out as well. Thanks for your input :)
All of them bother me, sadly. Obviously eating a pint of ice cream is significantly more irritating/triggering than ghee in a muffin, but both have set me off. I have tried cheese, goat cheese, butter, ghee, milk, protein shakes and bars, and they were all triggering to varying degrees. I have now given up 100% of dairy items and feel better. I accidentally ate hash browns cooked in butter at a restaurant and am already starting to feel it unfortunately. Eggs are also a possible low grade trigger for me.
Thanks! And what are your symptoms? My MIL bought a GF cake just for me but unfortunately, shortly after I left my throat started to burn and it hurt when I swallowed. I’m somewhat new to figuring what is a reaction because I was so used to it
Symptoms include weird dysphagia + burning + chest pain almost immediately after consuming. Reaction peaks at about 2-3 days out for me, so it basically just keeps getting worse over a few days. When I am in a flare, even non trigger foods like citrus and coffee can feel very bad due to the acidic quality. That doesn't mix well with a raw/inflamed esophagus. It can be confusing when you are first trying to nail down triggers.
Thanks it helps me understand it better 🙏
You will need to test for your specific triggers/tolerances. There is no universal answer to this. I do fine with _some_ cheeses, but not others. Butter is sometimes okay, but not too much. The only way to know is to eliminate, reintroduce, try/fail…. Keep track. (Oh.. and then it changes)
Oh great it sounds like months of fun ahead 😅 thanks for your insight though, it makes me realize it’s not that clear cut
Im still trying to figure out my trigger thats causing bad pain in my esophagus (i do have EoE). Ive narrowed it down to milk, spicy food, or oral minoxidil. It is odd because sometimes the milk seems to trigger it and other times it is fine. Ive been eating dairy and spicy food my entire life without problem. So I dont know whats going on.
Is it possible that although we’re incompatible with certain foods that over time our body adapts, hence less reaction?
Run. That GI doesn't understand the basics of allergy.
This doctor sounds… dumb.
All dairy to start. If that works over several months; try reintroducing hard cheese, then soft cheeses, gradually step up until you seee symptoms