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Celiac Or Not?

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Hi all,

I'm Jen, 34. I've had stomach issues pretty much my entire life. I've been diagnosed with all sort of things - migraines, IBS, gastritis, fibromyalgia, Chron's. But I never seem to get better. tTG has always been elevated and I have had the endoscopy with a biopsy and was then put on a gluten-free diet. I never improved being gluten-free and the biopsy came back negative. I was told to go off the diet. That was probably 4 years ago. They also did the genetic testing and said it's highly unlikely I actually do have celiac.

Fast forward to this March. I caught a terrible stomach flu. Since then, I've had diarrhea and nausea on a daily basis. I've lost tons of weight. The only foods I eat are bread, crackers, white rice and broth. CT scans are normal, blood tests are normal. Stool samples are normal. They haven't done another endoscopy/colonoscopy yet, since I just had them in 2008. But I think that's next on the list of tests.

I've been to 3 doctors now and no one can give me any relief. I'm currently on Bentyl for IBS-D, which is what they think I have. But, the tTG test came back high again and that I should be on a gluten-free diet AGAIN. She thinks it's latent celiac. I'm going back to my regular GI doctor on Monday, but I'm not going to be gluten-free in case they want to do another biopsy.

In the meantime, I'm nauseous all day, but I have diarrhea ONLY in the mornings. It's a lot of mucous and it's foamy and it smells terrible.

I just don't know where to go from here since I've been sick for 2 months now. I have a baby at home that I sometimes feel like I can't take care of because I'm so sick and just want to be in bed.

Just wondering if you all think this sounds like celiac. I just don't know where to turn anymore!

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Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8):

You do sound like you could be one of us. After you are done with testing do a strict trial of the diet for a couple of months no matter what the test results are as false negatives are not uncommon. It is also not unusual for us to see an increase in symptoms after we have a child. I know how hard it is to care for our families when we are so ill and I do hope the diet helps you. When you do a trial of the diet make sure you have checked all your meds and supplements with the maker to be sure they are gluten free.

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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