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LizEE

Eosinophilic Esophagitis - Gluten Connection?

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Hi,

I was diagnosed with EE in October 09. I read a few discussion here regarding EE. I'm new to this board and not sure if this is the right place for this topic.

I haven't been diagnosed with Celiac but find I do best on the Specific Carb Diet. If I stray too much I end up regretting it. I was wondering if anyone knows anyone who's EE improved on a gluten free diet. I've been eliminating a lot of foods to try to get a handle on this EE. I figure if I'm giving up wheat I might as well eliminate gluten. Has anyone heard of a connection?

I also think that because EE is auto-immune that I may have leaky gut as well. I have terrible digestive issues. Yeast doesn't show up in tests.

Thank you,

Liz

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I think, based on my reading here: http://www.medicinenet.com/eosinophilic_esophagitis/article.htm that because of the allergy connection your elimination of anything that you are allergic to makes sense. And yeast will, ask to be tested to Candida - it's your body's naturally occurring yeast but you can produce too much and it can cause wicked issues: http://www.holistichelp.net/candida.html

I was diagnosed (scratch testing both 5 & 10 years ago) to wheat and yeast. After the 1st set of testing I did an initial elimination diet, but food options were very limited, support was non-existent, and after a few years of shot therapy my dr. suggested that I start trying to put "problem" foods back in which at the time I did successfully. However one thing was learned at that time - SOY IS NOT AN OPTION FOR ME. I have a violent reaction.

Unfortunately, it didn't seem to last & now I am dealing w/ many other issues. Many of my issues parallel Celiac (tested negative last fall), other symptoms seem to parallel EE (currently in testing.)

Though I tested negative for Celiac, I immediately began removing wheat & gluten products from my home first. I also found out that even though I had not been purpusfully purchasing it, had inadvertantly been buying products w/ soy in it. NO MORE. I feel so much better w/ just those changes. However the one that has hardest has been casein/whey/milk/dairy. I LOVE ME MY CHEESE, and along w/ soy, milk and it's byproducts are EVERYWHERE!!! However, one day at a time, I am doing it! The next step is being successful outside of the home, especially since my job has me in the car ALL THE TIME.

I hope my experience helpes.

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I was just diagnosed this week with Celiac Disease, Eosinophilic Esophagitis and Raynauds. Crazy! I have been healthy my entire life, never been sick, never been hospitalized and then I develop three diseases at once. I am only 26 and I feel like I am falling apart. My doctor thinks that the EE is likely due to the gluten in my diet and hopefully once I eliminate the gluten the EE will clear up. I had never even heard of EE before but my GI doc decided to check for it while he was doing my endoscopy/biopsies to check for the celiac disease. I'm curious as to if anyone else has a combination of these three disorders.

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Skigirl and GG thank you for your replies.

Skigirl - It is hard to avoid soy but I think I've been pretty successful. I'm also allergic to corn which is another additive they put in everything. A lot of the "acids" like ascorbic and citric are often corn based. It's been crazy making but I just eat purer foods - nothing canned or bottled mostly. I've written to a lot of manufacturers - they are usually cooperative. I love and miss cheese and yogurt too! And a lot of other things. Eating out is problematic. I don't do it often. I talked with two of my favorites and found a couple of dishes I can order. I'll check out those links - thank you.

GG - Like you, I have never had any health issues aside from appendicitus when I was a kid - I'm in my 40's. I'm sorry you have all three things going on and you're only 26. I never heard of EE either. I would suggest seeing an allergist for further tests. Maybe it's not just the gluten. I suspected for years an allergy to soy and never ate corn and the tests confirmation that I wasn't imagining things. I wish I had gone for food testing much earlier because I think I could have avoided EE if I was not bombarding myself with allergens unnecessarily.

It seems there may be a connection with Celiac and EE. I've always suspected my dad has Celiac but he won't get tested. I've been gluten free for only a few days. My EE may be a bit better but it's hard to pinpoint what sets it off and what levels it off.

Thanks for getting back to me. I appreciate it! I'm getting more allergy testing in late March. Let me know how you are doing.

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hi,

I have ee and egid. first was diagnosed @4 yrs ago the latter 2. 45 yrs old. I am on swallowed pulmicort to try to get the eos down in my ee. EGID is working with elecare. Most of my DR's misdiagnosed me all my life with celiac, ibd, and just about everything else known to med profession! The first time in the last 10 years that I started feeling better was just a few months ago on the elecare. I am allergic to all grains, soy, rice, corn, seeds, most veggies and more foods and mold (you need to go to a specialist in ee and allergies with this disease-the best is in Cincinatti Childrens hospital). I don't think leaky gut, but it is a auto-immune disorder. If you are having digestive problems you probably have egid as well. Most Dr's don't biopsy for it because "someone" somewhere wrote that the two are not found together and that is just baloney. It's just missed all the time because of the special way that it has to be biopsied. You don't want to treat this lightly because it can reak havoc on your gut and esophagus. Sometimes irreversible damage (as in my case). Good luck

Hi,

I was diagnosed with EE in October 09. I read a few discussion here regarding EE. I'm new to this board and not sure if this is the right place for this topic.

I haven't been diagnosed with Celiac but find I do best on the Specific Carb Diet. If I stray too much I end up regretting it. I was wondering if anyone knows anyone who's EE improved on a gluten free diet. I've been eliminating a lot of foods to try to get a handle on this EE. I figure if I'm giving up wheat I might as well eliminate gluten. Has anyone heard of a connection?

I also think that because EE is auto-immune that I may have leaky gut as well. I have terrible digestive issues. Yeast doesn't show up in tests.

Thank you,

Liz

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Just a few notes from my research...

EE finally was given a standardized medical code in October of 2008. This is going to start the information and data collection of connected disorders/diseases. This should start to show a wider range of patients.

EE and the other Eosinophilics digestive disorders are still considered a mystery. It does seem that most cases can find an "allergic" response to a food or airborne "trigger". This is where gluten can be linked to EE.

Eosinophils have a "spear" that is used in it's attack. The eosinophils are the usually body's defense against parasites. It stabs into the invader to kill it. It will damage host tissue. This is where the leaky gut would have the association with Eosinohilic digestive disorders, from the puncture holes in the gut.

This is very important to know.... Eosinophils stay active for 12 DAYS. You must keep a food journal or you might lose your mind trying to figure out what is going on.

My daughter just had a follow up scope with biospy, and YES the elimination diet has COMPLETELY cleared her esophagus of eosinophils. :D:D:D:D:D:D:D It is very hard work and lots of dedication to keep such a restricted diet but in her case it is working! She still is losing weight, having stomach aches, headaches, and very tired all the time. So we still have some medical tests on Friday.

I did find these really yummy cookies. There are pricey too, but you can order them in bulk on-line @ www.lizlovely.com Some of the cookies are top 8 and gluten free ( they have the CYA statement made in facility that processes wheat, peanut, and treenuts) I haven't had a problem yet and the chocolate cookies are my addiction right now. :rolleyes:

Other brands that are top 8 and gluten free (not ALL products) Enjoy Life, and The craving place and the cookbook, The Allergen Free Baker's Handbook looks helpful too (I don't have it yet but the author was just featured on Martha Stewart recently.)

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Thanks for all the input.

I've been wheat free for over 70 days and gluten free for 10 probably more. I've been doing a lot of other eliminations and adding things back to see if I react.

I'll check out The Allergen Free Baker's Handbook - thanks Momida. Unfortunately, I have allergies besides the top 8 so lizlovely is out for me. I've been keeping a careful food journal for months now. It's helped but I'd like to see my symptoms decrease more. Not sure if this is possible.

I'm seeing a new allergist at the end of the month to identify delayed responses.

Thanks again. Let me know how it goes for all of you.

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I have leaky gut and Gastroenteritis. I understand what you all are going through. I have had this since a teenager. When the GI doctor told me to go gluten free after testing me for celiac and I was negative. I thought why. But then the symptoms came back and got worse. I also have symptoms of arthritis. I am going through elimination right now and can not do soy, gluten, chicken, corn, or dair and some veggies, I do fine for some reason on some pastas even though the parasites thrive on carbs. It is weird. I guess each person is different.I am beggining to feel better but it is a journey.

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Soblessed,

Thanks for your reply. Sorry your having so many problems. I think a lot of people don't come up positive on tests but are still intolerant or allergic to foods/gluten.

A lot of people with EE find relief by giving up the top allergens even if they don't test positive - weird. I haven't felt much improvement. More testing next week. I hope to get a better handle on this instead of the constant guesswork. Even with a food diary it's difficult to pinpoint problem foods. I'm happy your feeling a little better - it is a slow journey.

How's everyone doing?

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Ditch all chemically altered or preservative encased foods. Eat fruit, vegetables, meat, seafood, rice cooker rice, raw bars. Absolutely no preservatives, additives or chemicals. This includes virtually any type of sauce or any processed foods, cereals, tap water (chemicals), yogurt, chips, dip. Your symptoms will improve.

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I haven't felt much improvement. More testing next week. I hope to get a better handle on this instead of the constant guesswork. Even with a food diary it's difficult to pinpoint problem foods.

How's everyone doing?

I was just looking you up today on the message board to see how you were doing.

i am STILL struggling outside of the home, but inside I do very well. It probably helps that I live alone. I seem to have adjusted to the gluten-free pasta sold at my local grocery store (GIANT - MD, as opposed to GIANT-PA or GIANT EAGLE.) some of my friends are very aware and supportive - others look at me like i have a 3rd eye blink.gif.

feel free to add me as a connection.

Char

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