Confused...

[Guest Addicted2Gluten]

Hi Everyone,

About 2 years ago, I started to get very ill. I had always had stomach problems growing up and all of the doctors I went to told me I had IBS. But, anyway, about 2 years ago I started having diarhhea everyday, very bad stomach pain, extreme fatigue, bone pain, muscle aches, anemia, mouth ulcers, chronic yeast infections, headaches, paleness, abdominal distention, etc. The list of symptoms goes on forever.

My pediatrician noticed that my Anti-Gliadin count was elevated and sent me to a GI specialist to see if I had Celiac Disease. The specialist didn't even bother running anymore tests and told me that I just had IBS. After seeing many doctors, I was finally diagnosed by an alternative doctor as having "non celiac gluten enteropathy." They also told me that I had many other food allergies, as well. I was then put onto a gluten free, dairy free, and corn free diet.

After being on this strict diet for several months, I wanted to have a confirmed diagnosis. So, I saw another GI specialist who told me to start eating gluten for 3 days and then he would perform an endoscopy and a colonoscopy. At the time, I didn't realize that this was too short of a time period. But, I went through with it and all that was found was mild inflammation of the duodem (sp?).

The next year, I saw another GI Specialist since all of my symptoms hadn't cleared up. He put me on a gluten free diet for 2 months and then performed an endoscopy. He said that the results were normal and that there was just some mild inflammation again.

This year, I had heard about a very good doctor that specializes in Celiac Disease. A few people I knew went to him and recommended that I see him. He put me on a gluten challenge for a little over 2 months and performed an endoscopy. After the endoscopy he told me that it looked like I had Celiac Disease, as he noticed a lot of intestinal damage. But, after the biopsy reports came back they were negative for Celiac Disease. Although, he saw flattened villi, and villi that looked as if it had partially grown back from being damaged, along with scattered leukocytes, focal cryptoplasia and doudenal mucosa this was supposedly negative for Celiac Disease.

Since being on the gluten challenge, I have had a return of many of my symptoms. I have chronic yeast infections, stomach aches, headaches, neurological problems, mouth ulcers, fatigue, bone pain, etc. The doctor said that it is my choice whether or not I want to go on a gluten free diet, although I don't have Celiac Disease. However, I am afraid to do this because my symptoms could just be coincidental. But, as I stay on this diet I seem to be getting sicker and weaker, and recently I have been getting bladder infections, yeast infections, and extreme thirstiness which is getting me worried that with my radical change in diet (from strict gluten free, to very heavily based on gluten) I am giving myself diabetes.

So, I was wondering what any of you think about my biopsy? Do you think that it could have been signs of early celiac disease? Also, I have proven to have Celiac Disease in the past on the Anti-Gliadin blood test (the less specific one) and the Enterolab results and I have the DQ-8 gene for Celiac Disease. Would it be worth repeating the blood tests to see if any of the numbers have risen since I have been eating gluten? I'm interested in everyone's advice.

Thanks.

[mommida]

I feel, from what you have written, you have been diagnosed with Celiac. Genetically, biopsy (flattened villi), Anti-Gliadin blood test,and positive dietary response to the gluten free diet.

You should also look into getting tested for Diabetes, and other food allergies.

Laura

[tarnalberry]

The dietary challenge (getting worse when you go on gluten, getting better when you go off) IS a valid test in and of itself. Listen to your body! :-)

[krgg106]

I had all of the symptoms that you are experiencing. I have been diagnosed with celiac (one year ago). But with all your symptoms, I would try to go gluten-free for about 2 months and if you feel better and your symptoms disappear, then I would stick with the gluten-free diet. Believe me, you don't want to give your body any more damage. I also have osteoporosis and I'm 37 years old. I always chalked up my symptoms to being just allergic to certain foods. Or I would say that I ate something that didn't agree with me. I feel alot better since going gluten free, and I've even gained some weight (which was impossible for me before). I am also in the middle of trying to get my mother a proper diagnoses. She tested negative for the blood tests for celiac. She tested positive for the DQ2 celiac gene, AND she has alot of the symptoms that I had prior to my diagnoses. She is trying to decide if she should have the biopsy or to just go gluten-free and see if her symptoms disappear. Good luck to you, and I hope you feel better soon.

Kris in TN

[Guest Addicted2Gluten]

Thanks for all of your responses! I had to go to the doctor today because I was feeling worse and worse. It turns out that my blood sugar is very low and the took blood to check for other things, such as thyroid problems. The doctor also recommended that I go back on a gluten free diet.

Also, I was able to get in contact with the doctor who is investigating whether or not I have Celiac Disease. He feels that since my blood sugar is low I should get checked for Addison's Disease. However, he is also repeating the blood tests for Celiac Disease to see if any of the antibodies have increased since I have been on the gluten challenge. Also, he recommended that I resume a gluten free diet after the blood tests tomorrow morning.