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kim26

How Do We Proceed?

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my dd wa diagnosed thru positive blood test, negative biopsy, and positive response to the diet(VERY POSITIVE), about 3 months ago.?? since then my husband and i have both been tested, and both were negative. im on the diet to support my dd and do in fact feel better in regards to my IBS and energy level and mood, my husband is not on the diet. neither of us had the full panel, dr is not very educated on celiac. i had a biopsy looking for other things years ago after being violently ill, to the point of calling an ambulance off and on for about 3 months...the doc diagnosed me with duodenitis and IBS and sent me on my way. what now? do we ask for a biopsy? my husband won't do the diet without a diagnosis and i question whether or not i can stick to it myself without a diagnosis as well. any help would be appreciated!

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I have to say OP, the fact that celiac is genetic and that you were diagnosed with IBS but your child is diagnosed with celiac disease is a huge red flag (you know ibs is often misdiagnosed celiac disease). While this does not guarantee that you have it too, I would bet my money on it. Even with IBS you should have been on a modified diet, though a med doc may not tell you that. The fact that you feel better gluten-free should give you a big clue. Me and DS are gluten-free and celiac while my husband eats whatever I cook but still has some wheat products in the house (that he is very careful of). I would say, if you need a diagnosis to show some self control in the wheat department--try to get one. Just remember, that there is a high rate of false negatives with the tests. I have to add more two cents :D . If your child is old enough to miss the classic gluten-free products that daddy might tempt him/her with , you need to have a SERIOUS discussion with DH about this. I have found that some parents tend to be quite selfish when it comes to giving up foods. celiac disease is considered life threatening if left untreated and if your child sneaks his food because it is available you have a big problem. I hope none of this unsolicited info offends you.

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jhow32000,

you didn't offend me at all! i like straight forward answers! i DO feel better on the diet, but i find myself saying "oh i can cheat a little, my tests were negative". guess i just need to suck it up and do it! as for my husband, i seriously doubt he will go gluten-free without a diagnosis.....BUT he is amazing where my daughter and i are concerned. he's the cook in our house and he now makes only gluten free meals. for the most part the only gluten he eats is at work or when we are out, and even that is minimal. he's INCREDIBLY supportive. i still would like a diagnosis, but im willing to stick to the diet without one. its most definitely made i huge difference in my mood, and IBS symptoms and especially my energy and my ability to stay focused. its definitely worth it!

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i still would like a diagnosis, but im willing to stick to the diet without one. its most definitely made i huge difference in my mood, and IBS symptoms and especially my energy and my ability to stay focused. its definitely worth it!

You already have one, your body has given it to you. Up to 30% of us show negative on blood work, even if close to death. Dietary response is a valid diagnostic tool. Actually the best one there is. You little one got the celiac genes from somewhere.


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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ravenwoodglass,

i guess your right about the dietary response...i've just always been one of those people that wanted something concrete like test results to go on. guess its time to let that go...lol my mother was commenting last night that it would fit that im the one who gave it to my dd because i was a very colicky baby and always had tummy trouble as a child, not to mention hypothyroidism. i think i will just stay on the diet and see what happens! thx for the replies! the support is much appreciated!

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