Help With Test Results

[momandgirls]

Hi - Just wondering if anyone has any thoughts in terms of these test results - even the doctors seem confused...The first time around, my daughter's test results were: endomysial antibody - negative; TTG - 27.3 (positive is anything above 25). Based on this, she had a biopsy. She did not have flattening but did have some of the other signs such as elevated leukocytes. Then, she was supposed to eat lots of gluten (did not go well so it only lasted a few days) and the blood tests were retaken. The results are: endomysial negative and TTG 45. Just spoke to the nurse - she's never seen results like this and doesn't know what to make of them. I asked about Enterolab - she had never heard of them but wasn't opposed to trying it. I'll speak with the GI on Monday. In the meantime, she's going to bring my daughter's file to the Chief of GI and see what he thinks. Does anyone have any ideas? By the way, she gets lots of stomach aches on a daily basis - she's definitely lactose intolerant but we have gotten rid of all dairy and they persist. We haven't gone totally gluten free because the doctors don't want us to yet but she does not eat bread, cereal, etc. How do you differentiate between Celiac and gluten intolerance? What are the differences in the blood tests? Anyone know? Thanks!

[Guest nini]

Did they only do those two tests? Or did they do the complete Celiac Panel?

In my opinion Celiac and Gluten Intolerance are the exact same thing. The only difference is that the textbook definition of Celiac is confirmation of blunted villi with the biopsy. But ask yourself this, IF they do not find that would you really want to keep her on gluten when you can already tell it's bothering her, and wait until her health really deteriorates and she does have damage?

My opinion is that positive dietary response is your BEST diagnostic tool, and all you really need to know.

With those test results though it DOES show a problem with gluten, so at the very least she IS gluten intolerant.

I would suggest going ahead with the diet, get her healthy then TELL the Dr.s you want her to have a dx of Celiac or Gluten intolerance based on positive dietary response. That is what ended up happening with my daughter. She doesn't have any positive blood work to look to (it was negative) and we did not do the biopsy, But because of her incredible turn around on the gluten-free diet, her pediatrician was forced to agree that it was celiac, but she said she would only put "gluten intolerance" in her medical charts so that she doesn't run into problems with health insurance on down the road.

[momandgirls]

I understand the treatment for gluten intolerance and celiac are exactly the same. I guess I would like to know which it is because Celiac puts her at risk for so many other diseases whereas gluten intolerance would not. In the end, I agree...I would like to put her on a gluten free diet and see how she does. The doctors at this particular hospital seem to really want to pinpoint the diagnosis but don't seem to be able to and when I ask if we can just start the gluten free diet and see how she does, they keep telling me not to do it yet. Well, I speak with her GI on Monday - I'll see what she has to say about it.

[Guest nini]

Celiac ONLY puts her at risk for other illnesses IF she continues to consume gluten.

So with that in mind, they are the same thing, the treatment is the same... there are some experts that are starting to say that gluten intolerance is simply the early stages of Celiac, so be thankful it's found early...

[momandgirls]

So, in other words, once you stop ingesting gluten, then your risk is the same as the normal population? What if you already have another autoimmune disease? Will the autoimmune disease get better once you're off gluten? Do you know? Thanks so much!

[Guest nini]

So, in other words, once you stop ingesting gluten, then your risk is the same as the normal population? What if you already have another autoimmune disease? Will the autoimmune disease get better once you're off gluten? Do you know? Thanks so much!

Yes... Once you stop injesting gluten, your risk returns to that of the normal population. If you already have another autoimmune disease, that can be dx'ed and treated regardless of being gluten free or not. So if you are gluten free, you can still be tested and treated for other related autoimmune disorders. I have fibromyalgia and since I have been gluten-free, the symptoms are much less. It's improved tremendously. So yes, other autoimmune diseases do get better when you are off gluten. I read an article last year in Arthritis magazine that said that Arthritis symptoms are eleviated by a gluten-free diet. Lupus is another one that responds extremely well to the gluten-free diet.