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Pre-Biopsy, Desparate for some suggestions

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Hey Everyone,

Long story short, I have struggled with stomach issues my whole life, finally two weeks ago I went to the GI specialist. He was certain I had IBS, but wanted to do blood work for Celiac because symptoms are the same. So he did a series of tests and these were my results:

Tissue Transglutaminase IgA <1.3 (Normal is 0.0-4.0)

Tissue Transglutaminase IgG 10.6 (Normal is 0.0-6.0)

Immunoglobulin A 178 (Normal is 85-370)

Because the IgG was positive my doctor recommended that I get a biopsy so that he can rule out or diagnose Celiac. Here's my issue: up until this test for about 5-6 weeks I had been doing a ketogenic diet (High Fat, moderate protein, low carb) So I had been consuming very small, if any gluten. With a ketogenic diet you eat under 20 grams of carbs a day and most should be from vegetables. It wasn't until I was doing some research that I realized that false negatives happen if you aren't eating gluten, so I was extremely surprised that I had even tested positive. Anyways, I emailed my doctor asking if I should not cut out gluten and he said it is important to keep gluten in the diet until biopsy, so I have been... but you guys... I am struggling SO bad. I have severe stomach pains, I have a bowel movement less than an hour after I eat, I am tired all the time, this is horrible!

I am hoping that someone has been through this or something similar, because I am feeling so defeated right now. My biopsy is in one month, and thinking about having to feel this way for another month makes me want to cry. My question for you guys: How much gluten should I be eating? Is there any way I can eat things that have gluten in it and not feel as bad? Do you have example meals/food that has gluten in it that seemed to sit better than others? Any and all suggestions, ideas, experiences are welcomed. I am so happy that I might soon have an answer to my life long struggle with digestive issues but I'm feeling so alone in the process as no one I know has celiac or really knows anything about it.



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Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8):

Sorry you are having to go through this challenge. Pepto Bismal liquid could help with the stomach pain. Be aware that it can make your stool black so if that happens don't worry.  Prediagnosis I used Immodium.  If you need to eat away from home you could try taking a tablet a half hour before you eat. If you are at home it might be best to just let the D happen as it is your bodies way of clearing out something it doesn't want in it.  Some find it helpful to eat their daily dose of gluten before bed. that might help a bit. You are likely not absorbing nutrients well so a Stress B-Complex may help a bit with energy.

It will be over soon and you can go gluten free as soon as you have the biopsy done since you have already had the panel done. While you wait be sure to go to the Coping section and read the Newbie 101 thread. There is more to being gluten free than just gluten free food and it will help you learn what you need to keep safe.

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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