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Eosinophilic Gastroenteritis

pixiegirl
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pixiegirl Enthusiast
pixiegirl
Posted

I posted about the results of my endo. and colonos. and I didn't get any comments at all. :( But I have since found out what I have is Eosinophilic gastroenteritis. This is on top of Celiac. It means I will have to elminate more food from my life, take steroids, and general I'll be a lot sicker then I thought.

Is anyone else dealing with this or no anything about it first hand (yes, I've googled it and read up on it but I'd like some first hand experience)?

Thanks, Susan

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RiceGuy Collaborator
RiceGuy
Posted
(edited)

Well, according to what I've just read about the disease, the actual cause is unknown. IMHO celiac disease could be the underlying cause. You would not be the first to find major improvement in other problems once you get celiac disease under control. I hope that is the case for you, as the outlook you describe is rather grim :(

I don't know how you feel about doctors and their drugs, but I for one will not take drugs, especially after all I've been through with doctors in the past. I don't go to doctors anymore, since all they did was make things worse.

I don't want to try and give medical advice, but based on what you describe, I'd go gluten-free and probably stay away from casein, lactose, soy, and anything else which might interfere with recovery. Then monitor my conditions and see how things improve. I'd be betting the other conditions begin clearing up as well.

Edited by RiceGuy
Matilda Enthusiast
Matilda
Posted

..

pixiegirl Enthusiast
pixiegirl
Posted
  • Author

Just for the record I've been gluten free for 1 year and 3 months. I felt great for the first few months and then symptoms started to return, not to mention new ones. I don't like drugs either but I've felt so terrible lately that I'm at a point where I'll try them. I've also got 6 small ulcers in my stomach.

I'd like to think this new wrinkle is caused by celiac disease but I got on a list for Eosinophilic gastroenteritis and not only is it rare (so there are no lists like this one, where you get replies quickly) but most of the people have no problems with gluten and most of them have been tested for celiac disease in their long roads to trying to find out what is wrong with them. Most don't have celiac disease, so I don't think its caused by it.

I'm always such an "up" person but the past few days have really been hard for me.

Best, susan

paw Apprentice
paw
Posted

Susan, this is the first time I ever heard the term "Eosinophilic gastroenteritis". I have no help to offer you, but I hope that now that the doctor knows what is making you feel so bad they can start to take care of the problem and get you better.

jerseyangel Proficient
jerseyangel
Posted

Pixiegirl--I had never heard of your condition, but I googled it just now and there is a ton of info. there. I only read for a little while, but from what I read, wheat/gluten is a problem for a lot of those with EG. There was a lot of info on food sensitivites associated with it. If it were me, I'd settle in and do some reading on the subject--I read everything I can get my hands on when it comes to Celiac--knowledge is power! :)

RiceGuy Collaborator
RiceGuy
Posted

Plenty of good comments thus far. I'd only add that most people on this board seem to be saying that their tests for celiac disease were largely/entirely negative. It is not diagnosed very well at all, though more often now than it was.

I've also noticed new symptoms since going gluten-free. Many others do to. That seems to be very common. Apparently these subside as the gut heals.

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pixiegirl Enthusiast
pixiegirl
Posted
  • Author

Oh don't worry I'm staying gluten free, I get so sick every time I accidently get glutened. I'm just down, I guess, about having something else wrong with me. Eosinophilic gastroenteritis is rare so there are not big groups and such like there are for celiac disease. I joined the Yahoo groups for it and every single post is just a "pray for me" post, they don't give out any actual info, so thats upsetting. I'm an info junkie. I did the Yahoo/google searches too and they don't know much about this diseas so maybe thats the problem.

peace, Susan

  • 12 years later...
bstivers71 Newbie
bstivers71
Posted

both my daughter's have Celiac disease . My older daughter is a first generation and was diagnosed at age of 2 before anyone knew what it was that was 16 years ago. My youngest daughter was diagnosed in 2016 at age 14 . With that being said . My youngest has been having bad pains since dec. and will be going in  this Thur for another scope. The ped doc things is Eosinophilic Gastroenteritis.  When talking with the ped Gi  doc He has asked my history and I do have history of issue with my esophagus but I explained my daughter doesn't it's just serve abdominal pains and feeling sick to stomach and pain. Has anyone had done and know do they check both spots because i know there is something called EOE . but like I said she doesn't have issue with esophagus.  She has high Eos levels. but her celiac levels are within normal range. which is good so I'm not sure what could be causing . 

  • 1 year later...
suzymom Newbie
suzymom
Posted

My son (16) was tested for food allergies 2 years ago.  Positive for an onion allergy, but we told it was likely a false positive.  Negative for Celiac via blood test.  We didn't really make to many changes.  Fast forward, EGD and colonoscopy … now he has been diagnosed with both Celiac and Eosinophilic Gastroenteritis.  Celiac … not too hard to be gluten free these days, but ONIONS?  oh my!  That's a doozy.  We have eliminated both in the last week.   I am glad we found some answers and am hopeful.  Doctor said that if he didn't have gluten within 24 hours of the blood test, it's not unheard of to test negative.  Good luck, everyone!

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      Since you compromised the validity of the antibody testing by experimenting with gluten withdrawal ahead of the testing, you are faced with two options: 1. Reintroduce significant amounts of gluten into your diet for a period of weeks, i.e., undertake a "gluten challenge". The most recent guidelines are the daily consumption of at least 10g of gluten (about the amount found in 4-6 slices of wheat-based bread) for at least two weeks leading up to the day of testing. Note: I would certainly give it more than two weeks to be sure. 2. Be willing to live with the ambiguity of not knowing whether gluten causes you problems because you have celiac disease or NCGS (Non Celiac Gluten Sensitivity). There is no test for NCGS. Celiac disease must first be ruled out and we have tests for it. Celiac disease has an autoimmune base. NCGS does not. GI symptoms overlap. In the early stages of celiac disease, other body systems may not be showing stress or damage so, symptomatically, it would be difficult to distinguish between celiac disease and NCGS. Both conditions require elimination of gluten from the diet for symptom relief. Some experts feel that NCGS can be a precursor to celiac disease.
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