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3littleblessings

gluten-free - Too Late For Testing?

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Hi,

I am new to this forum and new to gluten/celiac information. Here's a bit of my story. I visited a natural practitioner who tested me for IgG food sensitivities. At the time, I was on Synthroid due to previous thyroid radiation from Grave's Disease, and was severely anemic, vit B12 deficient, and D deficient. All this despite taking supplements. I also had constant fatigue and stomach upset. My sed rate was very high (more than double what it should be) showing inflammation. I immediately went off gluten and dairy due to the IgG results. After a little while, I started to feel better. I also started to absorb my vitamins. My vitamin levels are in mid range now, and I went from being severely anemic to having too MUCH iron. My chronic upset stomach and fatigue went away completely! My Synthroid has had to be lowered, and my Sed-rate is now half of the limit, instead of more than twice the limit.

So, even though I will probably stay gluten free, I am interested in knowing whether I have celiac (which led to or exacerbated my Grave's). I also want to test my 3 children who have a few symptoms as well (FTT, short stature, poor weight gain).

I have been gluten free for 9 weeks. Will my test show a false negative, or has it been a short enough time. I am scared to introduce gluten as my doc is convinced that I have celiac disease.

Thanks for any input.

Elizabeth

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Since your doctor is sure you have celiac can you get your doctor to give you an official diagnosis in your records? Since it is advised to test all first degree relatives once someone has been diagnosed perhaps that would be enough to get your ped to test the little ones.

You may want to call the ped's office and ask to speak to a nurse. Tell the nurse you have been diagnosed and that you want to pick up lab slips to have the kids tested. With a Failure to Thrive diagnosis already in their charts they should give you one without too much of an issue.

You could try for the blood test or endo but with the length of time you have been gluten free there is a much higher chance of a false negative. I think 3 month gluten challenge is advised for someone who has been gluten free for more than a few days. However if you levels were high enough before the diet you might still show up a low positive, I don't know. If your doctor consideres you celiac you may already really have your diagnosis though.


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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Since your doctor is sure you have celiac can you get your doctor to give you an official diagnosis in your records? Since it is advised to test all first degree relatives once someone has been diagnosed perhaps that would be enough to get your ped to test the little ones.

You may want to call the ped's office and ask to speak to a nurse. Tell the nurse you have been diagnosed and that you want to pick up lab slips to have the kids tested. With a Failure to Thrive diagnosis already in their charts they should give you one without too much of an issue.

You could try for the blood test or endo but with the length of time you have been gluten free there is a much higher chance of a false negative. I think 3 month gluten challenge is advised for someone who has been gluten free for more than a few days. However if you levels were high enough before the diet you might still show up a low positive, I don't know. If your doctor consideres you celiac you may already really have your diagnosis though.

Thanks. I spoke to the ped earlier, and even though he doesn't think they have it (no diarrhea or stomach issues) he is sending me lab slips. He said it was unlikely they have it without apparent GI symptoms - ha. My youngest was tested at about one (2 years ago) because she stopped growing, but I am told the TtG was negative. They have been on less gluten ever since I went gluten free, so I think I'll gluten them before their testing. They are still eating it out, just not at home. I guess they'll be having a lot of sandwiches over the next few weeks.

I don't think I can get an "official" diagnosis because I have been seeing an alternative practitioner. We'll see what my regular doc says.

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Thanks. I spoke to the ped earlier, and even though he doesn't think they have it (no diarrhea or stomach issues) he is sending me lab slips. He said it was unlikely they have it without apparent GI symptoms - ha. My youngest was tested at about one (2 years ago) because she stopped growing, but I am told the TtG was negative. They have been on less gluten ever since I went gluten free, so I think I'll gluten them before their testing. They are still eating it out, just not at home. I guess they'll be having a lot of sandwiches over the next few weeks.

I don't think I can get an "official" diagnosis because I have been seeing an alternative practitioner. We'll see what my regular doc says.

If you have been seeing your regular doctor for the issues he may diagnose based on the resolution of your symptoms. If your blood work for deficiencies was done by your alternative doc make sure you get copies of the results from pre and post gluten free to show your regular doctor.


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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