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Anyone With Eosinophilic Esophagitis


glutengal

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glutengal Contributor

My daughter is 26 years old and was diagnosed about 5 months ago with EE. She has tried proton pump inhibitors (omeprazole and pepcid) with no relief from these at all. She has continued chest pain and her GI put her on Flovent and said to eliminate the 8 major food allergens as well. She had already been gluten free for 1 1/2 years. So we eliminated the other allergens and she has had no relief from this or the flovent. The doctor said to discontinue the flovent and wanted to put her on Donnatal and Nulev but we are awaiting a pre-authorization from medicare as they don't cover these meds. In the mean time I started her on an elimination diet 3 days ago (Turkey, Brown Rice, Sweet Potato, Green Beans and Water. She is still having no relief after 4 days. Just wondering if more time is needed to see any relief or should we change the foods? There are times when she says she doesn't want to eat and this is unusual for her. Has anyone else had experience with EE and what has helped? Are there other things she should be tested for? We are trying some Pepto Bismol tonight to see if it will help. Any other suggestions would be greatly appreciated.

Thanks to All


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shopgirl Contributor

Four days isn't enough time for an elimination diet. I've always heard a minimum of two weeks and some people even say six.

Louisa54 Newbie

You might also consider MRT food sensitivity testing which can pinpoint which foods and chemicals in the diet may be triggering the symptoms. Takes the guesswork out of the process. Any foods can be reactive, even those traditionally associated with a standard elimination diet.

verushka1974 Newbie

I'm really sorry to hear what she is going through. Just wondering, since you mentioned she's been on a gluten-free diet, have you checked for hidden ingredients on the turkey? I shop at a major supermarket and I always see on the label that either they add rosemary extract or some type of broth, making it not safe most of the time. In fact, I just received an article on buying a safe turkey if you are on a gluten-free diet. Also, have you checked her medications to make sure no food allergens are present?

glutengal Contributor

I'm really sorry to hear what she is going through. Just wondering, since you mentioned she's been on a gluten-free diet, have you checked for hidden ingredients on the turkey? I shop at a major supermarket and I always see on the label that either they add rosemary extract or some type of broth, making it not safe most of the time. In fact, I just received an article on buying a safe turkey if you are on a gluten-free diet. Also, have you checked her medications to make sure no food allergens are present?

The turkey is from the Whole Foods Market and has no added antibiotics or hormones etc. and the only meds. she is taking are levothyroxine for hypothyroidism and Low-Ogestrel Birth control to regulate her cycle. Both I was informed are gluten free.

verushka1974 Newbie

I would look for a second opinion after 6 months and still not getting better. My suggestion is to do a google search on best or top GI doctors in the city where you live in or best GI doctors by state and you might find a doctor close to you. You can also try searching or calling any nearby university hospital. They do a lot of research and are definitely more up to date. This is what I've done with every single specialist I go to and of course, make sure it's covered by the health insurance. Hope she feels better soon!

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