Testing

[Brittany2]

Hello, I'm a 19 year old college student so I'm definitely busy and stressed between work, school and extra curricular. This past year I've felt rather tired, discomforted in my abdominal area and sometimes shaky as well as frequent bowel movements for at least a year. I used to eat the classic college diet of pasta, pizza and bread the quick cheap food items, which would make me rather sick, but I never knew what was wrong. Its been frustrating since its sometimes hard to focus on my art with school with the symptoms. So, I've been doing a great deal of searching for medical issues and between me and my friend we stumbled upon Celiac Disease. The symptoms are an almost perfect match and it makes sense, a few times I tried to go without gluten products and I've felt much better.

Recently I had a ringworm infection that made me go to the dermatologist and they tested my blood levels to find my iron was on the lower side as well as lower thyroid which has since gone away, but I'm taking multivitamin supplements now. They referred me to my doctor here in Pittsburgh who I told about my concern luckily he seemed understandable and concerned knowing it is being more commonly diagnosed, so he only did the one antibody test, anti-endomysial which turned out to be an 8, but I remember him saying that between 5 and 20 was a gray area. That week though that I was tested I avoided it because it was finals week for that quarter and I wanted to be fine, so I dont know if that would have altered the results too much.

I was still concerned so I went to the Digestive Disorders clinic from my doctors recommendation, where the digestive doctor refused further testing saying all I have is irritable bowel syndrome, which doesn't seem right to me after researching it. His solution was to give me medicine which only seems to lessen the discomfort, but that has been all. Yet he wasn't the doctor that I was specifically referred to, so I've since made an appointment with the one my personal doctor recommended to get a second opinion. No one in my family that I know of has Celiac, but many other Auto-immune diseases do run in my family.

The important questions I want to get an informative opinion on are:

Has anyone else have had negative on that individual blood test anti-endomysial? Are they really that accurate, or has anyone have had negative results and later find out they do have the disease?

I noticed many people have been mistaken with irritable bowel syndrome, especially women, and that its hard to get a doctor to truly diagnose Celiac. I just want to feel well again so I can achieve my future goals without interruption. Any advice would be wonderful, thank you!

[GottaSki]

Negative blood work for Celiac can not rule out Celiac. Even endoscopic biopsy can be negative in a Celiac. Your dietary response seems the strongest reason to give strict gluten free a chance.

If you have a positive response to gluten-free you can have gene testing done. Some doctors will diagnose if you have genes and positive dietary response.

That being said, you may want to go to another GI doctor...ask if there is someone in the Digestive Disorders Clinic that wants/specializes in Celiac as it is a very difficult diagnosis in many cases. Make clear your dietary response, possible anemia and autoimmune disease within your family. Checking other vitamins in bloodwork, such as B12, D and K can also aid in diagnosis.

While you are seeking diagnosis, remain on gluten. If you cut out the gluten both blood and biopsy can be normal.

Personally I was diagnosed at 43 with only a slightly elevated tTG IgA...but my biopsy confirmed celiac along with severe damage to villi. Sure wish I found out in my early years...could have avoided major illness over the past decade.

Good Luck!