Awaiting Biopsy Results

[marianne54]

I would like advice as to what to do if my biopsy results are negative. My history is as follows:

I have a long history of ulcers, reflux, nervous stomach, ibs, migraines, chronic fatigue, joint and muscle pain, and thyroiditis. In college, I was treated for mold allergy which provided partial relief. I also tried wheat free diet for a while. When I was 47 I insisted on a bone density test and had osteopenia. I also entered menopause that year. In addition, my mother had scleroderma, a devasting autoimmune disease. She had many of same GI symptoms I did preceeding for many years preceeding her diagnosis. I have worked with diet, avoiding a lot of pasta and bread over the past few years and exercised and felt somewhat better.

Recently, I've terrible stomach aches, cramping and diarrhea. It didn't seem like I was digesting any of the food I was eating. I was 50 and due for colonoscopy. The pain and diarrhea occured it seemed when I tried to increase whole grains. I was sure it was divertculitis, but the colonoscopy was normal.

I was reading about celiac disease and noticed that I had probably 16 out of 20 of Dr.'s Green's symptoms. I went on a gluten-free diet immediately and began to feel better by week two. I then reintroduced gluten only to have a recurrence of the stomach ache and diarrhea. I return to the gastro dr. and she decided to do an endoscope since it had been three years since my last one. She also took blood work which was negative and insisted I would have to have been off of gluten for six months to have had it affect my blood work. I did remind her that I had stopped eating a lot of bread and pasta as it made me feel awful after I ate. She also advised against returning to gluten before the biopsy. I was hesistant to do that as everything I had read advised the patient to stay on gluten as diet affects the results. I ignored the Dr. went on a gluten load for the month before the biopsy and felt absolutely horrible. Instead of gaining weight eating pasta and bread, I lost weight.

My question is, if the biopsy is negative, do I have celiac and stay on the diet?

[Guest cassidy]

If you have a positive result from the diet, which it sounds like you do, then you need to stay on it. Bloodwork and biopsies only catch about 50% of the cases. Doctors don't always understand this and tell patients that if things are negative they are fine, that just isn't true. My bloodwork was negative but all my symptoms go away on the diet and come back when I'm accidently glutened.

Maybe you have gluten intolerance instead of celiac, but the treatment is the same - the diet.

You said "do I have to stay on the diet" to me it isn't a "have to" type of thing. I wish I could be healthy and not be on the diet, but that isn't possible. I don't care if 50 doctors told me that I didn't "have to" stay on the diet, there is no way anyone is making me eat gluten again. If you feel better on the diet then I'm sure you would want to stay on it so you feel better. No one wants to have glutening type symptoms. So, it is a choice, even if it is an unpleasant one.

I'm sure once you think about it you will realize it is a good thing that you found a way to feel better even if things are a bit confusing right now.