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Member Since 12 Apr 2014
Offline Last Active May 12 2014 11:41 AM

Posts I've Made

In Topic: 2 Year Old, No Visible Intestinal Damage, Waiting On Pathology

02 May 2014 - 09:16 AM

Thanks, everyone. The biopsy results are finally beginning to roll in and I'm feeling tremendously discouraged :-( Thus far all we have are the results of the Lactase Tissue and Sucrase Tissue tests.

Surcase, Tissue: 37.0 (>=25.0)
Lactase, Tissue: 18.5 (>=15.0)

So from what I gather the tests are both normal. From what I can find, children usually have very high lactase levels and as we grow the number begins to decrease. It seems to me that for her to be close to the cutoff for lactase when she's only 2 years old is interesting, but I know it won't mean anything. From what I understand of villous atrophy (and I'm not a doctor so I may not be understanding this correctly at all) you are pretty much guaranteed to have lactase deficiency when villous atrophy is present because the lactase enzyme is found at the tip of the villi. If the lactase levels are normal then I assume her villi are in tact or only very very minimally damaged (certainly not damaged enough to warrant a celiac diagnosis). Is it possible to have celiac disease and not have lactase deficiency?

I truly believed we were on the right track. Just the other day she had PB&J on whole wheat bread for lunch and for dinner she had whole wheat macaroni and cheese and I watched her belly grow more and more distended with each meal. She sat at dinner and just cried. That night I thought "tomorrow we're in for a nasty poop!" She woke up the next morning with greasy looses stool (tremendous amounts of it) that smelled so strong and foul that I could smell it before I entered her bedroom (she's in diapers). I really hoped for a solid diagnosis for her. At this point we'll likely have to just remove gluten and settle for no diagnosis.

In Topic: Help Understanding Blood Results

26 April 2014 - 10:40 AM

Thank you so much, Nicole! I'm sorry I didn't see this sooner! I really appreciate all of the articles! I'm going to begin a new thread, like you suggested. I have a few updates and other questions as well :-)

In Topic: Help Understanding Blood Results

17 April 2014 - 05:24 PM

The primary care doctor said that a DGP IgG of 20 is nothing. He said that with celiacs they see numbers much higher than that. I asked him why her numbers were in the positive range if it isn't celiacs and he said he doesn't know. He out in a referral for the GI anyway, but he doesn't think anything will come of it. I do understand where he's coming from (it is a very weak positive), but I cannot find any literature anywhere that explains what else could be attributed to elevated DGP IgG. Any ideas? Everything seems to say that the DGP IgG levels do not in anyway indicate gluten sensitivity so why are the numbers above normal?

In Topic: Help Understanding Blood Results

14 April 2014 - 06:12 PM

I definitely don't expect a diagnosis based solely on the results of the blood tests they ran. The doctor that ran the tests is her primary care so I'm not certain how well versed he is in celiac testing. We plan to go gluten free regardless of everyone's test results because I believe it's absolutely worth seeing what may or may not change on the gluten-free diet, but we're obviously staying "glutened" until we get through all the testing.

I had blood drawn today by my primary care doctor and should have the results at the end of the week. My 5 year old (who we've been discussing) is from my first marriage and her dad won't even discuss any of this with me. This is another reason why if she does have celiac disease it's crucial for her to be diagnosed. It will be nearly impossible to get her father to enforce the gluten-free diet during his visitation even with a firn diagnosis. If she's gluten sensitive and not celiac, he will not agree to her following the diet when she is with him. My 2 year old is from my current marriage and her dad (my husband) has a cousin who had celiac disease. My husband plans to get tested when we move this summer. He is in the military and if he is found to have celiac disease it's going to have a major impact on his career. It will be easier to wait until we finish this move before he opens that can of worms.

In Topic: Help Understanding Blood Results

14 April 2014 - 05:28 PM

i think celiac disease could be a possibility for your family.  :(  That DGP IgG test is very specific to celiac disease. If you look at this report by the World Gastroenterology Organisation (on page 12) you can see that the specificity of the DGP IgG for celiac disease is 99-100%. That means that up to 1% of the time, at the most, a positive DGP IgG is caused by something other than celiac disease (a false positive).... celiac testing doesn't get any more specific. Granted, it's not a very strong positive result, but a positive is generally a positive, especially when accompanied by symptoms. KWIM?
I'm guessing that the doctor will want to repeat the tests and do an endoscopic biopsy.  Don't remove gluten from their diets until all testing is done.
I agree that tests run on toddlers can be less reliable. If doctors won't retest, you ma want to consider removing gluten from her diet too.
Good luck!

Thank you for your response! I agree that the literature seems to indicate that the likelihood is high that a positive DGP IgG is pretty reliable. I'm just anxious that the doctor won't agree to investigate any further because it was a weak positive, the other test was negative, and some of her symptoms aren't "classic" (such as the constipation instead of diarrhea). I'm going to bring a copy of that report with me when we speak with the doctor tomorrow. I wish they had done a total IgA so I knew whether or not to put much stock in the results of the DGP IgA.

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