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ChemistMama

Which Relatives To Test?

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Last fall my son (who is now 2) was diagnosed with celiac (blood test, biopsy). He's now doing wonderfully on his gluten-free diet, finally starting to grow out of his clothes and acting like a regular 2 year old.

My pediatric GI (who is head of the dep't at a large children's hospital) told me to test my daughter (which I"m doing this week), but didn't think I or my husband needed to be tested. I've read conflicting things on the internet about this, too.

So I'm asking if there's anyone out there who has had a child diagnosed with celiac, and then tested the whole family. Right now none of us have any celiac symptoms. Of course, if my daughter also has it, then I will get tested for sure.

Thanks!!

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It is great that your little fellow is doing so well. After my son was diagnosed with celiac, our immediate family has all done the bloodwork - why not, it's so easy. My daughter and I were negative, but I am still going a step further and finding out what enterolab can tell us, to be sure. My daughter is seeming so much happier since we have altered our at-home diet that I feel like she may have a problem with gluten. As for me, my Mom was never diagnosed with celiac, but in retrospect it seems pretty likely she had it. She had negative bloodwork but died from common celiac complications. If everybody on both sides of your family is living long, healthy lives, you may decide not to worry, but in our case I want to find out everything I can.

-Jane


Jane

Son (10) diagnosed 10/07 via bloodwork and biopsy

Elimination diet resulted in avoiding dairy, soy & corn for a time

Feeling much better

Enterolab results indicate gluten sensitivity for daughter (14) and myself

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any children would be where I would start, then go to the childrens parents... assuming one of the parents passed it to the child that parent should let his/her siblings know as well as their parents... follow the chain backwards....

I have it, my cousin on my mohters side has it....... pretty sure my mother has it but she is in denial and my sister most likely has it as well, so far my father and brother seem to be doing fine.


Just my .00000002 cents worth

If I knew what I was doing years ago I would have half a clue today!

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From: http://www.celiacdiseasecenter.columbia.ed...nts/A02-FAQ.htm

Q: Why do my family members need to be screened for celiac disease?

When the diagnosis is established in one family member, their first- degree relatives (parents, siblings and children) should have blood tests for celiac disease. This is because at least 10% of family members will have the disease, even if they are asymptomatic. Screening is also recommended for second-degree relatives (grandparents, grandchildren, aunts, uncles and cousins) as they are also at an increased risk for celiac disease. Family members who already have an autoimmune disease are at a greatly increased risk to have celiac disease (25%).

The reasons to diagnose family members prior to the development of symptoms include the prevention autoimmune diseases and malignancy.

From: http://digestive.niddk.nih.gov/ddiseases/pubs/celiac/

However, since celiac disease is hereditary, family members, particularly first-degree relatives

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It is recommended that all first degree relatives be tested, so that includes both parents. If either of you show positive then all your first degree relatives need to be tested, your brothers and sisters, Mom and Dad etc. Be aware though that not all folks who need to be gluten free show up on blood work. People that have symptoms, anything ranging from depression and other psych issues, fibro, migraines, off and on tummy problems, gallbladder or liver issues, arthritis, neuro issues like balance, thought process difficulties, parasthesias etc. should really do a dietary exclusion to be sure even if they are negative on blood work. For some of us the GI stuff shows up long after the other stuff has already had a severe impact on learning and life in general.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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