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Yes Or No?


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#1 mcc0523

 
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Posted 29 January 2011 - 03:45 AM

Like the header for the title says, my test results came back with a normal tTC IgA and a slightly elevated tTC IgG. As my labwork says, I have "none detected" niacin, almost no Vitamin D, and I'm on the "low normal" ranges of the other vitamins I was tested for. Even with a little over a week of going gluten free, the nausea that has been a constant in my life for... a really, really long time (at least 15 years) is not nearly as severe. I've been able to forgo anti-emetics a couple mornings, actually, when I would have taken it if I had still been eating gluten (I suspect). D hasn't been so bad... things have been loose, but not explosive (except the morning after I ate something without reading a label... which is when the nausea came back).

So.... I trust others who live with these diseases than I do doctors who only read about them. I haven't heard from my doc about these results, actually... They were drawn a month ago, and were expected to be in after two weeks. I called yesterday and demanded they be faxed to me. I don't know if or when I would have been notified. I am supposed to get another test and see this doctor again, but after this, I'm not sure if I want to. I have been reading more and more about the effects of B3 deficiency, and it's not pretty. The same with Vitamin D. It is a miracle that I only have very, very minor skin involvement going on right now (pellegra and DH look very similar.... perhaps a connection?), and I don't have full blown Pellagra (although I'm not so sure that I don't have delirium right now. :rolleyes: ).

Sigh... I keep hearing snippets of the Hippocratic Oath, not so much "Do no harm", though that if you follow that, then providing prevention should be no question, because prevention of a disease is far superior than a cure for a disease (or something like that).
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DX: Ehlers-danlos syndrome, cervical syrinx, Postural Orthostatic Tachycardia Syndrome, Barrett's Esophagus, GERD, osteoporosis, thyroid disease, anemia, hypokalemia, niacin deficiency, vitamin D deficiency and various other malnutritions.

Although not diagnosed officially yet, I have suspected celiac since October of 2010. At least 2 separate physicians who are experts with collagen deficiencies (such as Ehlers-danlos syndrome) have mentioned the possibility to me, and one has tested (although I haven't gotten the results back yet).

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#2 ravenwoodglass

 
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Posted 29 January 2011 - 05:32 AM

It can take a while to heal and the fact the nausea is getting better is a good sign. False negatives are not uncommon so go with how you feel after a couple months on the diet strictly. Hopefully you are supplementing with good gluten free vitamins to help the deficiencies. It is a good idea to avoid dairy and soy for a bit until you are well healed and make sure you do all you need to do to avoid cross contamination. Change your toaster, cutting boards, replace scratched pans and don't bake with flour for others. Take it easy with gluten free replacement foods for a bit and go with whole unprocessed naturally gluten free stuff instead. Hang in there it and hopefully you will be feeling better soon.
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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)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
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 with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity 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)

#3 cassP

 
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Posted 29 January 2011 - 05:02 PM

Like the header for the title says, my test results came back with a normal tTC IgA and a slightly elevated tTC IgG. As my labwork says, I have "none detected" niacin, almost no Vitamin D, and I'm on the "low normal" ranges of the other vitamins I was tested for. Even with a little over a week of going gluten free, the nausea that has been a constant in my life for... a really, really long time (at least 15 years) is not nearly as severe. I've been able to forgo anti-emetics a couple mornings, actually, when I would have taken it if I had still been eating gluten (I suspect). D hasn't been so bad... things have been loose, but not explosive (except the morning after I ate something without reading a label... which is when the nausea came back).

So.... I trust others who live with these diseases than I do doctors who only read about them. I haven't heard from my doc about these results, actually... They were drawn a month ago, and were expected to be in after two weeks. I called yesterday and demanded they be faxed to me. I don't know if or when I would have been notified. I am supposed to get another test and see this doctor again, but after this, I'm not sure if I want to. I have been reading more and more about the effects of B3 deficiency, and it's not pretty. The same with Vitamin D. It is a miracle that I only have very, very minor skin involvement going on right now (pellegra and DH look very similar.... perhaps a connection?), and I don't have full blown Pellagra (although I'm not so sure that I don't have delirium right now. :rolleyes: ).

Sigh... I keep hearing snippets of the Hippocratic Oath, not so much "Do no harm", though that if you follow that, then providing prevention should be no question, because prevention of a disease is far superior than a cure for a disease (or something like that).


my ttg iga & igg were both "weak positive". and my antigliadin were negative. but my endomysial was positive, and 2 yrs after those tests- i got DH, Hashimoto's and Graves.... so dont necessarily be fooled by your WEAK elevated numbers...

what about the antigliadin & endomysial antibodies? and you might as well get a Total Iga Serum test too.
this disease can be very sneaky- you'll want to see all pieces to the puzzle
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1986- Elevated Speckled ANA/no Lupus.negative Sjorgens
2008- AntiGliadin IGA/IGg~ Negative,TTG IGA/IGg~ Weak Positive, Endomysial Antibody~ Positive, IGA Deficient.
no biopsy (insurance denied)
6/2010- Enterolab Gene Test:
HLA-DQB1 Allele 1 0302
HLA-DQB1 Allele 2 0302
HLADQ 3,3 (subtype 8,8)
7/2010- 100% Gluten Free
8/2010- DH
10/2010-Hypothyroid dx-> 12/2010 Hashimoto's dx + 1/11- Graves dx :(




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