Should Parents Of Celiac Children Be Diagnosed?

[Dloi]

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.

[kareng]

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.

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"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:

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"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)."