4 Out Of The 5 Are Celiac?

[ThePhilly's]

I am new to this site, but what I've read so far, it seems very helpful. Here's our story. Son, 7, had been experiencing symptoms of celiac, but we tried removing lactose from his diet back in Sept 08. He seemed to be feeling better, but then around Christmas he got a lot sicker. We really watched what he was eating and were more and more convinced. Took him to our GP who ordered an Endomysial AB, Endomys AB TITR and Transglutam AB (that's what the form says) and the results were positive and >100. Dr. confirmed celiac disease for him and we started a gluten free diet about 6 weeks ago. He is feeling so much better, has more energy and I think his concentration in school is improving. Then we decided to get the rest of the family tested. Hubby does not have celiac disease. However I seemed to have tested the same has my son, >100 and so did my oldest son, 10, who also scored >100 and my daughter, almost 6, was positive, 35. I can still hardly believe this and the fact that if middle son wouldn't have had all his troubles, who know's how long we would have carried on with our gluten diet. Has anyone else experienced anything like this? I have never had any trouble or any symptoms AT ALL. I talked with my GP today and he does not think a biopsy is necessary, especially with our numbers. I have read reports stating that the biopsy is the "gold" standard and yet it seems like the blood test is very accurate. Should we be getting the biopsy or do most people feel that the blood test is confirmation enough? Thanks.

[psawyer]

Whether to do a biopsy or not, when there are clear positive results to the blood test, is a topic of much discussion.

An endoscopic examination can look for possible other conditions besides celiac disease that may be contributing. But if the celiac disease is in early stages, there may not (yet) be enough damage to the villi for it to be detected.

My opinion, for what little it may be worth, is that a positive blood response indicates that you should go on a totally gluten-free diet, but there may be value in the endoscopy to ensure that there are not other conditions present. I would *NOT* take a negative biopsy as meaning that you can go back to eating gluten.

[Tallforagirl]

...if middle son wouldn't have had all his troubles, who know's how long we would have carried on with our gluten diet. Has anyone else experienced anything like this? I have never had any trouble or any symptoms AT ALL.

A substantial proportion of diagnosed celiacs are so because of screening following a relative being diagnosed. I got diagnosed because my younger sister was diagnosed first. She got diagnosed not so much because of symptoms of celiac disease, but because she was screened as a result of her diagnosis of rheumatoid athritis (also an autoimmune condition).

My only symptom was B12 deficiency causing fatigue and nausea, and that only in the six weeks preceding my diagnosis.

My older sister has recently got a positive blood test result too. At the moment she can't have an endoscopy because she's pregnant. Her doctor advised her to do the gluten-free diet and they will review in 18 months.

I feel very lucky that I have got an opportunity to make changes to my lifestyle and avoid possibly serious health complications later in life.

[wendstress]

After a very positive blood test, I went gluten-free and had good results. PCP referred me to a specialist.

I subsequently met with a gastroenterologist, who recommended the EGD and Colonoscopy to rule out any other conditions. Turns out I also have mild gastritis, and microcolitis (procedures were just a couple weeks ago.

I'm happy I did it because I know exactly what I am dealing with. Treatment for the celiac and mircocolitis is to go Gluten Free. Gastritis should resololve itself as my immune/digestive systems heal. The microcolitis can also have intolerances to other foods, but I don't know what they will be (if any) for me yet. Just trying to get through a day at a time....

Good luck. Hope this helps!