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Could Celiac Disease And Eosiniphilic Esophagitis Be Connected?
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Hello,

I am new to the forum. I've recently been diagnosed with eosinophilic esophagitis as a result of what I thought was a very bad collagenous colitis flare... I was diagnosed with CC 3 years ago but have had continual issues with bloat, diarrhea depression, joint pain (primarily in my hips) and issues with wheat in particular but also rye and barley and to some extent oats.Especially around the time of my cycle...

Based upon my symptom description my GI ordered B12 and Vitamin D blood tests, a Celiac panel, an endoscopy and colonoscopy. My vitamin D level was 16, B12 normal and Celiac panel negative. Here's part of my issue... I have been trying to eat gluten-free for 3 months, and this is something I shared with my GI. Shouldn't I have introduced gluten back info my diet before testing? Everything I've read seems to indicate this... Is it worth sickening myself and having the test done again?

The other side of the coin for me is the esophagitis... Triggers for this type include GERD, asthma and food allergies... I do not suffer from the first two but - wheat, soy, milk, eggs, seafood and nuts are common food triggers - and I already know that wheat is not my friend. A few days ago I had regular mac and cheese (not thinking) and almost immediately had cramping and diarrhea. I'm using a Flovent inhaler and taking a Nexium a day and I'm down to 1.5 meals a day because I don't know what other triggers cause the esophagitis. Has anyone had an experience with having more than one autoimmune disorder? Do you know of anyone who was diagnosed with one issue which was really masking a greater issue?

Thanks in advance,

Michelle Suzette

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If you were strictly gluten free for 3 months than your tests would definitely come up negative (not false negative, but negative, which means you are doing a great job of avoiding the food and your body is healing!). There are several others on this forum that have multiple autoimmune disorders thanks to their issues being ignored by doctors for years or even decades.

It sounds like you have the answer to your question, you feel better and have less triggers when you are off gluten, whether it is celiac, non celiac gluten intolerance, or just a coincidence, is it really relevant? If eating gluten makes you that sick don't feel like you need an official diagnosis, many on this forum are self diagnosed and doing great guiding their own nutritional lives. If you honestly want a realistic test reading I would say at least two months on gluten.

Unfortunately I do not know of a link between celiac and your current condition.

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Yes there is a proven link between Celiac and Eosinophilic Esophagitus. (if I remember right JAMA October '12 or even as early as '11) It has lead to the reccomondation that all new cases of EE be screened for Celiac.

My daughter was diagnosed with "probable" Celiac at 17 months old and EE when she was 6 years old. (Her EE diagnosing scope was done when she was gluten free for almost 5 years.)

It is consistant to be negative on allergy tests, as the reaction isn't really a true "allergy".

The way the elimination diet went in her case was to keep her gluten free and eliminate the top 8 usual suspects and peas. She had a dramatic improvement. She was scoped again (in January) to show complete healing in the esophagus. Then we tried to add back some of the foods on a challenge. She needs to avoid gluten, egg, fish, shellfish, and peas. We have also noted a seasonal allergy connection. late summer early fall triggers the reactions and after the frost freeze of winter the symptoms calm down.

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Thanks to everyone for the advice! I'm still feeling out everything. I try to be informed but short of self-diagnosis but then, you know your body and it's triggers, right? I have a follow up with my GI next week and now that I know more about EE than I did when she called me with the diagnosis, I have a ton of questions for moving forward... I'd much rather eliminate bad foods and find healthier options than continually use a corticosteroid... My GI is a "treat it with drugs first" kind of gal...

Any advice for making it through the holidays? Do you have recipes for your favorite foods? I don't now how much more rice and mashed potatoes I can stomach... lol

Thanks Again,

Michelle Suzette

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Yes there is a proven link between Celiac and Eosinophilic Esophagitus. (if I remember right JAMA October '12 or even as early as '11) It has lead to the reccomondation that all new cases of EE be screened for Celiac.

My daughter was diagnosed with "probable" Celiac at 17 months old and EE when she was 6 years old. (Her EE diagnosing scope was done when she was gluten free for almost 5 years.)

It is consistant to be negative on allergy tests, as the reaction isn't really a true "allergy".

The way the elimination diet went in her case was to keep her gluten free and eliminate the top 8 usual suspects and peas. She had a dramatic improvement. She was scoped again (in January) to show complete healing in the esophagus. Then we tried to add back some of the foods on a challenge. She needs to avoid gluten, egg, fish, shellfish, and peas. We have also noted a seasonal allergy connection. late summer early fall triggers the reactions and after the frost freeze of winter the symptoms calm down.

Wow! Thanks Mommida! My GI basically diagnosed me and prescribed meds so I'm doing the research on EE on my own.. I am glad I found this forum. I don't feel like this is "all in my head" anymore...

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Just saw this thread - I was recently diagnosed with EE but clearly have leaky gut issues (and on the endoscopy my intestines were inflamed. No evidence of celiac so my doctor just stuck me on meds for the EE and never even touched on the issues that brought me in to see her! So I've been doing my own research on the subject but still feel very confused, so I know the feeling!!

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Hi Daisychamp, This is my first gluten free holidays so I'm by no means the expert but it really isn't something to fear. I have a great sugar cookie recipe that I found. I couldn't believe it tastes as good as my old wheat recipe, butter and crispy and good. Great for rolling cookies, http://www.landolakes.com/recipe/1527/star-cut-out-cookies-gluten-free-recipe. A lot of chocolates are fine. Nuts can be a nice treat. Personally I'm a little different because I have had an aversion to wheat as long as I can remember. That's probably why I went 30 years without a diagnosis. So I'd rather have a nice Mexican dinner (without flour tortillas, which I always thought were gross) or some risotto. I bought a great cookbook, "Gloriously Gluten Free". I'd recommend that. Not about substituting wheat but just great recipes that happen to not touch wheat.

=)Megan

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What medications are you taking?

There wasn't any current research (first diagnosed 4 years ago) to justify any long term medication.

At first diagnoses it is pretty standard to go on Flovent (modifed steroid inhaler for medication to be swallowed not inhaled) and Prevacid (at least something to reduce acid and let the esophagus heal)

There were some testing on various asthma medications... My daughter was never prescribed anything further and long term Prevacid really didn't help much.

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    • Hi Aly and welcome You may want to repost this in a new thread, that way more people will see it and can advise you.  I think you would be much better off getting the celiac test now, if you stay off gluten you will need to go back on it and that can be much harder. That said, loads of your symptoms look like they could be gluten related.  I had a persistent 'trapped nerve' for instance under my eye which would twitch like crazy. Since I went gluten-free doesn't happen any more.  Best of luck! Matt
    • Your scalp sounds like seborrheic dermatitis. I have that and although its better after going gluten-free its very persistent. The dermatologist recommended Nizoral shampoo for it and it does help. I think dairy has a big part to play with skin problems, for me at least. 
    • I was diagnosed this year and I live on Oahu. I have yet to meet another celiac, so that tells you something about our limitations here. I work in Waikiki and do frequent Rouffage. It is nothing fancy, small place, but keeps me fed when I need something. I also like Greens and Vines. It is a vegan restaurant and worth every penny. Greens and vines sets up at the KCC farmers market on Saturdays too. Places in Waikiki that do offer a gluten-free menu include, PF Changs, Dennys, Big City Diner and California Pizza kitchen. I do not trust those places due to the risk, but they "offer" gluten-free options. I did try and order a beer at Yard House in Waikiki. They label clearly states that it contained wheat, so yeah sent that back with the waiter. I have also tied Doraku in Waikiki. I called ahead and spoke with management. That went well and they offer gluten free soy sauce. There is a deli at Down to Earth Grocery store in Honolulu that has gluten-free options, but the whole foods here do not offer hot food that is gluten free. They do have a hot food bar, but you have to stick to the whole plain salad and veggie options. It's good to hear the hotels here are getting better, beyond Waikiki hotels there is no one really interested in being gluten free.
    • Just found this site today. Did you ever find one? I was diagnosed this year and I live on Oahu.
    • I was diagnosed this year and I live on Oahu. I have yet to meet another celiac, so that tells you something about our limitations here. I work in Waikiki and do frequent Rouffage. It is nothing fancy, small place, but keeps me fed when I need something. I also like Greens and Vines. It is a vegan restaurant and worth every penny. Greens and vines sets up at the KCC farmers market on Saturdays too. Places in Waikiki that do offer a gluten-free menu include, PF Changs, Dennys, Big City Diner and California Pizza kitchen. I do not trust those places due to the risk, but they "offer" gluten-free options. I did try and order a beer at Yard House in Waikiki. They label clearly states that it contained wheat, so yeah sent that back with the waiter. I have also tied Doraku in Waikiki. I called ahead and spoke with management. That went well and they offer gluten free soy sauce. There is a deli at Down to Earth Grocery store in Honolulu that has gluten-free options, but the whole foods here do not offer hot food that is gluten free. They do have a hot food bar, but you have to stick to the whole plain salad and veggie options. It's good to hear the hotels here are getting better, beyond Waikiki hotels there is no one really interested in being gluten free.
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