Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Anyone With Eosinophilic Esophagitis


glutengal

Recommended Posts

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


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



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!

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,202
    • Most Online (within 30 mins)
      7,748

    Judy Wysocki
    Newest Member
    Judy Wysocki
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      They may want to also eliminate other possible causes for your symptoms/issues and are doing additional tests.  Here is info about blood tests for celiac disease--if positive an endoscopy where biopsies of your intestinal villi are taken to confirm is the typical follow up.    
    • Scott Adams
      In the Europe the new protocol for making a celiac disease diagnosis in children is if their tTg-IgA (tissue transglutaminase IgA) levels are 10 times or above the positive level for celiac disease--and you are above that level. According to the latest research, if the blood test results are at certain high levels that range between 5-10 times the reference range for a positive celiac disease diagnosis, it may not be necessary to confirm the results using an endoscopy/biopsy: Blood Test Alone Can Diagnose Celiac Disease in Most Children and Adults TGA-IgA at or Above Five Times Normal Limit in Kids Indicates Celiac Disease in Nearly All Cases No More Biopsies to Diagnose Celiac Disease in Children! May I ask why you've had so many past tTg-IgA tests done, and many of them seem to have been done 3 times during short time intervals?    
    • trents
      @JettaGirl, "Coeliac" is the British spelling of "celiac". Same disease. 
    • JettaGirl
      This may sound ridiculous but is this supposed to say Celiacs? I looked up Coeliacs because you never know, there’s a lot of diseases related to a disease that they come up with similar names for. It’s probably meant to say Celiacs but I just wanted to confirm.
    • JoJo0611
      I was told it was to see how much damage has been caused. But just told CT with contrast not any other name for it. 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.