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Need Advice Please!

MO423

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MO423 Newbie
MO423
Posted

I'm 26 years old, female. As long as I can remember, I have had stomach problems. I'll describe them next, but just FYI, it's very descriptive!

I usually eat a diet high in gluten (whole wheat bread, whole grain cereals, etc.) I've been a healthy eater for a long time, but gluten causes me major issues on a daily basis. When I eat gluten, here are my symptoms:

-Constant stomach cramps and bloating (in fact, it's very strange if I go a day and do NOT have this).

-"Fatty" stools (sticks to the toilet bowl)

-Major gas

-Diarrhea 1-2 times a week at least

-Feelings of weakness and fatigue after eating gluten

-Occasional mouth sores

-Problems concentrating due to the above symptoms

-Lactose intolerance

* I will add that my stomach cramps can get so bad that I'm doubled over in pain and have to lay down.

I'm naturally a thin person (5'8, 130 pounds) but my stomach gets so bloated that my pants feel tight. It's horrible.

I went to my doctor and had a blood test done for celiac disease - twice. I made sure that I'd been eating plenty of gluten prior to the tests. Both came back negative. My doctor just ruled this out as IBS.

Now, here's the interesting part.

When I eat no gluten, I have no problems. I'll eat lots of fresh fruits, vegetables, brown rice, tofu, lean meat, etc. and I'm completely fine. My stomach feels great, I don't feel lousy and tired, and all my symptoms virtually disappear. I feel like a new woman when I eat this way. So, I've decided to stick to this eating plan. I feel too good NOT to. My lactose intolerance also goes away when I don't eat gluten. My stomach feels fine with milk, yogurt, cheese, etc. as long as gluten is NOT involved.

Stomach problems run heavily in my family. Diverticulitis, celiac disease, and ulcerative colitis are all found in my family tree somewhere. My aunt has the exact same problem/symptoms I do, and when she goes gluten free, she's totally fine.

My question is... if my doctor said I do NOT have celiac disease and the blood tests came back negative, why have I been this way my whole life? It honestly feels like I do have celiac disease based on my symptoms. I would greatly appreciate any constructive feedback.

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GottaSki Mentor
GottaSki
Posted

The blood tests can be false negative. There are many that have posted on this site that they had negative blood with positive endoscopic biopsy. My blood tests at dx (after decades of worsening symptoms) were all weak positive, but all the biopsies showed total villous atrophy. My children (teens/young adults) are all gluten-free now - some had ALL negative tests, but all of their various symptoms have improved gluten-free.

You have found the most accurate information you can - your health is improved by removing ALL gluten. Your options are to push for an endoscopy, which will likely be negative given your time gluten free OR gluten challenge again for a longer period than you did with prior blood tests. Personally I think you are fortunate to know you can not eat gluten - diagnosis or not - Celiac Disease or Non-Celiac Gluten Intolerant - you can't eat gluten.

Continue to live a healthful gluten-free life :)

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