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My Attempt With A Gluten Challenge

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Hi all,


I've always had a sensitive stomach but my problems began about 3 years ago. I got sick one week and it just never went away. I was nauseous and had abdominal pains and cramping every time I would eat no matter how small of an amount. This lasted for 4.5 months during which I lost 90 lbs. I am overweight so the weight loss was not a bad thing just way too fast. I even ended up in the hospital a couple times for dehydration during that time. My doctor put it down to fatty liver which usually is asymptomatic and when it does have symptoms nausea is not one I can find associated with fatty liver anywhere. Since that time I have been better, mostly. I still get regular stomach issues, nausea, cramps, bloating, diarrhea, etc. Near the end of that time I decided to ask for a celiac test from my doctor which he ran and it was negative. My concern there is that even though I was eating gluten products I was not eating much of anything so I worry it was not enough over the 4.5 months to maintain the high levels of antibodies. I also am unsure which tests he ran. 


I had decided to try gluten free anyway. Because the test was negative I have not been extremely strict with it. I avoid gluten most of the time though I have not been so strict with things that list it as possibly containing gluten/wheat. My symptoms do occasionally crop up still and my doctor has tried many things which never help. He has finally referred me to a gastroenterologist who wants to test for celiac, among other things, during an endoscopy. She wants me to eat gluten filled products for at least 4 weeks before the test. 


I have been doing it a week now and can't handle it any longer. Within 24 hours I was getting the GI symptoms and a week later I am finding it unbearable. I am choosing to stop the gluten challenge after only 8 days. I've had brain fog, fatigue, etc. I'm not sleeping well though so I can't definitively tie it to the gluten intake. I got a sore on the inside of my cheek on day 3 and a large red painful bump on my buttocks on day 4. My anxiety has been extremely high and may be contributing to the severity of the symptoms of course I know some people with celiac also have anxiety and depression as symptoms of it. 


I have always had a problem with diarrhea, headaches, extremely sensitive skin since I was a child. I don't really think its DH as it seems to be contact dermatitis from lotions, skin products, etc. I've seen a naturopath who was constantly surprised at how sensitive my system is to everything. I can handle few prescription and OTC medications without side effects, most commonly GI related. 


Honestly I don't know if its celiac but I most definitely feel better going gluten free. I am going to have the genetic testing done, which I know does not prove a diagnosis of celiac if its positive, and if it is positive I am going to treat it as a definitive diagnosis and go 100% gluten free. I need to call the doctor back but I worry how she will react. I will still do the endocsopy of course but without the gluten challenge I know it may not show a result for celiac, depending on if my gut has healed over the past year and a half with a mostly gluten free diet. 


I am looking for everyone's opinion on this matter and some advice on how to speak to the doctor when I tell her I can't tolerate the gluten challenge. Do you all think it's wise for me to get the genetic testing? If its negative I will assume its NCGS rather than celiac. If its positive I will assume celiac and adopt the gluten-free lifestyle completely. There are no known cases of celiac in my family but there are a number of food allergies and sensitivities, especially in my immediate family. None of us can handle dairy and there are also a few with soy and egg intolerances. My mother has been diagnosed with IBS but was never tested for celiac and she has a very hard time with it. She also has GERD. I'm beginning to wonder if perhaps her issues are misdiagnosed celiac. 


Anyway, I'm sorry. I guess I'm looking for reassurances that I'm not totally stupid or crazy for thinking it might be celiac and yet refusing to complete the gluten challenge. Some advice on how to proceed with my doctor would be much appreciated as well.

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Celiac.com Sponsor (A8):

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Call your GI doctor as soon as you can. Tell them what has happened since you started the challenge. The doctor may be able to prescribe some meds that might make symptoms more tolerable or may tell you to stop the challenge. When you call do ask to speak with a nurse or ask if the doctor can call you back. 

I'm sorry you are reacting so badly to the challenge. That happens to a lot of us unfortunately. 

Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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