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Should Parents Of Celiac Children Be Diagnosed?
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I just read a post from parents of a celiac child asking whether they should get themselves diagnosed. I want to say emphatically yes because it tends to be a genetic condition and also because in many cases, the symptoms will not show up until you are well past 60 years.

As the youngest of six siblings, I can tell you you do not want to be discovering in your 70's you should have avoided gluten earlier. All Six of us have had pretty rough results from the secondary effects of the condition, and it has been hard for me to watch the tragic late-in-life effects on my siblings. Most of the effects are evidently the effects of malabsorption of essential nutrients.

I strongly advise at-risk persons to get their facts together while they are young enough to act on them.

And to discover all the great recipes for a nutrient-rich alternate -carbohydrate lifetime of good meals. I went gluten-free in my early 60's and 15 years later unlike my remaining siblings I'm doing well (and eating well). I recommend if you are symptom free to do the Enterolab type test to get the benefit of the range of indicators. Or just go gluten free anyway.

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I just read a post from parents of a celiac child asking whether they should get themselves diagnosed. I want to say emphatically yes because it tends to be a genetic condition and also because in many cases, the symptoms will not show up until you are well past 60 years.

As the youngest of six siblings, I can tell you you do not want to be discovering in your 70's you should have avoided gluten earlier. All Six of us have had pretty rough results from the secondary effects of the condition, and it has been hard for me to watch the tragic late-in-life effects on my siblings. Most of the effects are evidently the effects of malabsorption of essential nutrients.

I strongly advise at-risk persons to get their facts together while they are young enough to act on them.

And to discover all the great recipes for a nutrient-rich alternate -carbohydrate lifetime of good meals. I went gluten-free in my early 60's and 15 years later unlike my remaining siblings I'm doing well (and eating well). I recommend if you are symptom free to do the Enterolab type test to get the benefit of the range of indicators. Or just go gluten free anyway.

I'm not sure. Were you trying to reply to a specific post or thread? Rather than start a new topic?

Anyway, I'll respond to 2 parts of this.

http://www.cureceliacdisease.org/archives/faq/what-is-the-prevalence-for-others-in-my-family-to-have-celiac-disease-since-ive-been-diagnosed-with-it

"What is the prevalence for others in my family to have celiac disease since I’ve been diagnosed with it?

Celiac disease is an inherited autoimmune disease. The prevalence of celiac disease in 1st-degree relatives (children, parents, siblings) has been reported by numerous studies around the world to be significantly higher than in the general population, hence the need to screen every 1st-degree relative. The actual prevalence varies among the published studies, between 4-16%. Our own experience when testing for celiac disease in 1st-degree relatives is a prevalence around 5%, or 1:20. In 2nd-degree relatives (aunts, grandparents, uncles) a prevalence around 2.6%, or 1:39."

And the Enterolabs part:

http://www.cureceliacdisease.org/archives/faq/why-dont-you-recognize-tests-stool-tests-or-otherwise-for-gluten-sensitivity-that-are-currently-available-through-companies-like-enterolab-or-cyrex

"Why don’t you recognize tests (stool tests or otherwise) for non-celiac gluten sensitivity that are currently available through companies like Enterolab or Cyrex?

We only embrace tests that have endured rigorous scientific evaluations. So far, these tests have received no evidence-based support.

Enterolab has never successfully published anything on the accuracy of stool tests (nor have any other stool test manufacturers, to our knowledge) making it difficult to confirm the research results. Because of this, we must make our decisions based on what has been published; Harvard, UCSD, and the American College of Gastroenterology all agree that stool tests are simply not sensitive or specific enough methods in screening for celiac disease.

We can say therefore with confidence that the test currently being used by these labs is not good enough. In fact, while it is true that about 40% of people with proven gluten sensitivity have elevated AGA-IgG, it is also true that about 15-25% of the healthy individuals who have absolutely nothing wrong also have elevated AGA-IgG. Hence, about 60% of gluten sensitive people do not have elevated AGA-IgG (making the test not sensitive enough); and about 20% of normal, non-gluten sensitive people have elevated AGA-IgG for no apparent reason (making the test not specific enough)."

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    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
    • Mnoosh, I had swollen lymph nodes prior to celiac dx and for a while after going gluten free. My neck as well as groin. The groin ones were the worst. Guess what? All gone! It's hard to recall a time line & consider that everyone is different but I think mine completely resolved within a year.  You've been given great information. Just breathe and then again, breathe. You're going to be fine. 
    • It is the only thing you have eaten, so it can't be anything else?  I eat it with no issues so I am not sure how you can be certain that is the problem.  All I am saying is that its sort of "your word against mine and the company's word".  
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