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Virgie

Should I Get Tested?

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Hi! I suppose this is not really a new question but I keep going back on forth on this and was just wondering what you all thought. My 13 year old daughter just got dx with Celiac in September. And I am wondering if the rest of the family should get tested. My son did get tested 3 years ago but it was negative then. He has also had endoscopies that did not show celiac and has had allergy testing done so I feel that he probably does not need to be tested again. Now as for me I do not have any real diarreha or constipation issues although I do sometimes get diarreha after eating McDonald's fries (not sure why). I am also not losing weight (in fact I have gained weight in the last year). What I do have is an almost constant achy body, sore knees, sore feet, etc. I am only 47 but somedays feel like I am 67. I also get head aches. And often have cankersores in my mouth so bad that it is hard to eat., & I also have dental issues. So I am wondering if with any of these symptoms if celiac could be the reason? For my husband the only reason I worry about him is that he is losing weight. He is 5'9" and weighs 135. A little thin there I think but maybe I am just jealous that I'm not that thin. My sister-in-law tells me that he is so busy that is why he loses weight. Which is true that he works alot and I think does have a fast metabolism but he also eats a whole lot more than I do and drinks at least 2 beers a day (more on the weekend or at a party) and they have alot of calories in them too and yet he still loses weight.

Do you think we should be tested? Should we do Entrolab? Would that be just as good as going to the doctor?

Thanks for your input! :)

Virginia

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I would test the whole family. You've got nothing to lose. I'd also re-test your son. Celiac is something that gets triggered by an event so even if he didn't have it three years ago, it's possible he's developed it now.

As for how to test - it depends. Enterolab is a perfectly ok diagnosis in my mind. It also keeps the official diagnosis off your medical records which could be useful later in life if you or your children ever have to get private insurance. But, if you want to get a 504 plan for the kids for school, you'd probably need a doctor's note, and, depending on your doctor, he/she may or may not provide that if you don't have an official mainstream diagnosis.


Gluten-Free since September 15, 2005.

Peanut-Free since July 2006.

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I would definately test the whole family and I second the vote for Enterolab. We had the whole family tested after my diagnosis, all showed positive on conventional testing but it was a low positive and one of us was told the positive was negative until we got our hands on the test itself and saw that the result was into the positive range. The doctor just didn't think it was positive enough to bother with. Even family members who thought that their issues were not gluten related discovered differently once they had gone gluten-free. I would suggest that the family try the diet strictly for a bit even if conventional regular doctor blood results are negative. I have no crystal ball but the one that I predict will have the biggest issue is your DH. Gluten in alcohol can be extremely addictive and he may find it hard to switch from those couple of beers a day to a glass or two of wine.


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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