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I Am So Mad...celiac Afterall!


sue1234
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Almost 3 years ago I had celiac blood work done, along with an endoscopy for biopsies. The labs came back with only one marker high, the deaminated gliadin AB, IgA 45 (0-10). The other two markers that are most looked at for a diagnosis of celiac were both negative. The biopsies were negative. So, I was told I don't have celiac and to go on my merry way. The above high result was never really explained. I have also mentioned this result to other doctors, one a different gi doctor and another endo who works with celiac patients. The gi said no celiac because no positive biopsy, and the endo ran more celiac labwork, and this time it was negative. By then, though, I had cut most wheat out(but not all).

So in the last few days I have been researching celiac again for the 100th time. Today I found this lab test on the Mayo lab site, and these are how to interpret these results:

Negative: <20.0 U

Weak positive: 20.0-30.0 U

Positive: >30.0 U

Positive test results for deamidated gliadin antibodies, IgA or IgG, are consistent with the diagnosis of celiac disease.

So, apparently I DO have celiac disease! How in the heck do you get adequate help with this? The last gi doc I saw was the head of the gi dept. at that large medical school. He's the one that was trying to put a psychological reason on me, when he asked, "when did your last child leave home?".

I know the treatment is the diet, and I can make myself do that. But, why haven't I had anyone really take this bull by the horns and correctly acknowledge celiac?? I am so disillusioned with the medical system when it comes to diagnosing difficult problems.

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Hi Sue,

sorry to hear that this was missed 3 years ago. It's happening everywhere tho if that makes you feel any better. That's why the people at GFAB started their website. IMHO, the people who started the forum, Cara, Anne and Al, are experts on all things gluten. They've researched it and posted published info on this for at least 6 years. I found them in 2006 when looking for info on gluten ataxia.

In my celiac support group most of us raised our hands when asked if it took years to get a proper diagnosis. I got mine in 2007 after 17 years of being disabled with CFS and the NIH says CFS can be from celiac disease.

Here's recent info from GFAB on how gluten sensitivity or celiac disease can be diagnosed without a biopsy. There's more info on page 3.

I'm not sure if the link here is your test or not tho. Maybe it's on the 3rd page.

I'm not sure if you can find all this info in the glutenfree 101 section as I haven't kept up with all this. Chances are Cara put this there too tho.

This quote is half way down and written by Anne.

http://www.glutenfreeandbeyond.org/forum/viewtopic.php?t=5991&postdays=0&postorder=asc&start=15

" Wed Oct 17, 2012 6:46 am Post subject:

--------------------------------------------------------------------------------

Diana, with a positive TTG and EMA tests some doctors will not bother to biopsy especially if the results are very high. That being said, I would imagine that Mayo, being Mayo, will want to do a biopsy.

These articles say highly positive TTG can forgo biopsy

http://www.ncbi.nlm.nih.gov/pubmed/22197946

http://www.ncbi.nlm.nih.gov/pubmed/22119616 "

FWIW. Many of us celiacs won't just heal from going on the GF diet. That's on gfab too. In my case, it looks like I had gluten damage to other organs.

tc .. d

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Thanks. See, it is the TTG and the EMA that was negative for me. At the time, I thought those were THE tests that rule in or out celiac disease. My really high DGP was just this elephant in the room that nobody paid any attention to.

Ugh, why can't someone find a cure or a medicine for celiac already?

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Fwiw, I'm surprised that mayo said a positive result to the gluten antibody test implicates celiac disease.

My understanding is that this shows your body produces antibodies to gluten but that doesn't

mean you're going to have damage to your intestinal villi aka true celiac disease. Only those

with the celiac genes are in danger of getting celiac disease / damage to intestines directly related to

ingesting gluten. And this damage is repeatable thru gluten exposure. Meaning no gluten for life.

Others depending on their genes may have

other diseases associated with gluten antibodies. These can be found in theglutenfile.

The info on gluten sensitivity has evolved over the last few years so I could be wrong. I count on the folks at gfab and keep tabs on it.

Fwiw, finding gf foods has gotten easy over the last few years but we still need to watch out for cross contamination

ourselves. I just got cc'd from ciao bella gelato because I was told it was all gf. It's my fault for

being so trusting. I didn't need it anyways. Lol ..

Tc .. D

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Have you tried going gluten free? I'd say try it. It can't harm any other than being inconvenient. If you start to feel better you know you're heading in the right direction. Might be easier than trying to get an uncooperative dr to interpret the test. I think more than a few people here have found they felt better gluten free even if they aren't celiac.

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