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15 Months Gluten Free And Still Testing Positive For The Disease


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10 replies to this topic

#1 Newbee

 
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Posted 10 October 2012 - 05:50 PM

Just got back my latest TTG IGA results. I've been gluten free for almost 15 months now and was really hoping this test would be negative. It was close, but still positive. They say anything less than 20 is negative. My score was 20. My first TTG IGA was 125 followed by a score of 33 7 months later. Now 7 months later it only dropped 13 points. I know I should be testing negative by now. I'm very careful in what I eat and have eliminated grains, processed food, and most other food. So I don't think I'm contaminating myself and my doctor agrees. I've probably had the disease for about 38 years. I know that can slow down the healing. I'm curious if others have had similar experiences and how long before you finally tested negative?
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#2 mushroom

 
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Posted 10 October 2012 - 06:13 PM

You may never test absolute negative - don't forget that under 20 is negative so you are so darned close - congratulations for getting that low. I think that is wonderful and cannot understand why you are upset :rolleyes: Don't fret, just keep doing what you are doing, tighten up any areas where you may have gotten a bit lax (if any) and test again in another year. It took you a long while to get where you got to, so you have to expect for it to take a while to get back. :)
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

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Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
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#3 Newbee

 
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Posted 10 October 2012 - 06:22 PM

I'm not really upset, just a little frustrated and curious if others have taken longer than a year to get a negative score. My GI had mentioned after my 2nd test that some people never test negative but he still wants to keep testing me. And I'm still having issues. But just found out I developed thyroid disease in the past year so that might explain issues as I understand that can mimic some celiac like symptoms.
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#4 mushroom

 
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Posted 10 October 2012 - 07:30 PM

I am self-diagnosed so was never tested, therefore there is no baseline I can ever test against. I just go by how I feel :) But I do know that it took me at least three years to heal (sorry if that discourages you, but I am probably older than you, too!).
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

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

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#5 Newbee

 
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Posted 11 October 2012 - 04:03 AM

Interesting to hear how long it took you to heal. I've heard it can take a long time if you've had the disease a long time. I was pretty patient the first 6 months and got antsy after the GI said I should be better by then. I've read it can take as long as 1 year for blood tests to normalize. But I'm past that. I know it is close to normal. Just wish I would hurry up and heal and stop developing other new health problems. I spend way too much time researching my health issues.
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#6 Takala

 
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Posted 11 October 2012 - 07:56 AM

Make sure your thyroid medications are gluten free.

Don't forget, some people never test positive, either, so it's all good as long as you stick to the gluten free diet.

You also might want to look into whether you could be reacting to "other" ingredients.... I had to switch brands on gluten free flour type ingredients because oat cross contamination was setting me off - I may never have figured that one out, except I was lucky enough to have talked to another celiac about it and she explained how different companies have different standards for what ingredient/ products they run thru their lines.

The people with neurological symptoms are supposed to be the most sensitive, I know I was not no where near "normal" after only 2 years gluten free, and there is no way to guesstimate whether I've had this since childhood or developed it as an adult, because I did not have typical symptoms. In retrospect, looking at the bone loss and arthritic changes, it was definitely "there" as a young adult so it's at least 3+ and maybe 4 decades of damage.
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#7 Newbee

 
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Posted 11 October 2012 - 05:02 PM

Yep, checked with the manufacturer on the thyroid medication before I bought it. I've found that I have a lot of food intolerances so now I mostly follow the SCD diet which is completely grain free. That has helped with symptoms quite a bit but the few foods I don't react to give me a very limited diet. I saw my GI doc today and he told me to keep doing what I'm doing, nothing else will help he says.
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#8 Roda

 
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Posted 12 October 2012 - 04:17 AM

When they checked your thyroid, did they do the thyroid antibody tests? If you have autoimmune thyroid problems or other autoimmune conditions the tTG can be elevated in those as well.

This year is the first time I have had COMPLETELY negative blood work(it had been 2.5 years since my last tests). Initially I only had the IgA tTg done at my time of diagnosis and it was positive at 78 I think(>20 pos). I never had the gliadin tests done. Six months later I had the tTG repeated and it was negative and IgA/IgG gliadin antibodies done and they were both positive. I didn't get upset since on the latter two I had nothing to compare it with. Again retest in a year proved the tTG negative but the other two positive still. At this point I was having symptoms of diarrhea, fat malabsorption, anemia and stomach pain. I had a repeat scope and I had a stomach ulcer and some inflammation in the small bowel. FF a few months and still having symptoms. Doc wanted to put me on steroids but I refused. I did end up getting a RX for pancreatic enzymes and I told him I was going to get rid of everything(even gluten free stuff) and go back to basics. I ate fruits, veggies and meat. If I didn't fix it I didn't eat it. In three months time I felt so good and didn't need the RX enzymes anymore.

I got to looking over the things that could have caused an issue. I noticed I used a lot of a certain brand of gluten free products. I began to wonder about gluten free oat cross contamination(ate them once 7 months after I went gluten free and reacted really really bad). Called the company and inquired and it was a possibility. So to test the theory I ate some baked items from a gluten free bakery that used that brand of flours etc. I reacted horribly.

So not only to I have to make sure my food is gluten free I have to go the extra step and make sure they are gluten free oat free and free from cross contamination from them. I really feel that the avenin protein(the oat protein) is what was causing my labs to stay elevated. It is estimated that appx. 10-15% of celiacs react to the protein just as they do the ones from wheat, barley and rye. You can do more research on avenin sensitive enteropathy. This may not be a problem for you though, just thought I would put it out there.
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Me:
Celiac disease(positive blood work/biopsy- 10/2008), gluten free oat intolerent, Hashimoto's Thyroiditis/Disease, Raynaud's Disease


DS2(age 9):
celiac disease(positive IgA tTG, no biopsy- 11/2010)


DS1(age 13):
repeated negative bloodwork and negative EGD/biopsy. Started on a gluten free trial(8/2011). He has decided to stay gluten free due to all of the improvements he has experienced on the diet.


#9 Gemini

 
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Posted 16 October 2012 - 01:49 PM

Just got back my latest TTG IGA results. I've been gluten free for almost 15 months now and was really hoping this test would be negative. It was close, but still positive. They say anything less than 20 is negative. My score was 20. My first TTG IGA was 125 followed by a score of 33 7 months later. Now 7 months later it only dropped 13 points. I know I should be testing negative by now. I'm very careful in what I eat and have eliminated grains, processed food, and most other food. So I don't think I'm contaminating myself and my doctor agrees. I've probably had the disease for about 38 years. I know that can slow down the healing. I'm curious if others have had similar experiences and how long before you finally tested negative?



Hi Newbee......I need to tell you that your doctor is running the incorrect test for dietary compliance. This happens ALL THE TIME and it infuriates me to no end. Here's what you need to do....the correct testing to see if you are still ingesting gluten is the AGA IgA and AGA IgG or the newer test that is run in place of these, the DGP. The tTg test is for intestinal damage (tissue) only. It can be elevated from other autoimmune problems, most notably Hashi's thyroid disease, autoimmune liver disease and a few others. If you run the DGP and it's really low, then you are not ingesting gluten and you could have another AI problem. Or it could be that you are slow to heal but I doubt that as I went my whole life with Celiac, was diagnosed at 46 years old with an extremely high tTg and it was back down in the normal range (albeit on the high end of normal)after 1 year.
I would look into the possibility that you may have other AI issues or, at the very least, run the other tests to see if you are actually ingesting gluten, which it doesn't sound like you are.

Don't drive yourself crazy with your diet because it sounds like you are doing a good job but you won't know for sure until you have the correct test run. Do you have any symptoms that would make you think you are ingesting any gluten?
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#10 Newbee

 
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Posted 20 October 2012 - 10:56 AM

The doctors did find that I had hashimoto's disease this time (really high antibodies for this), so perhaps as suggested this is why I'm still showing a positive result with the TTG IGA. Blah, hope I don't get anymore autoimmune conditions.
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#11 Gemini

 
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Posted 20 October 2012 - 03:13 PM

The doctors did find that I had hashimoto's disease this time (really high antibodies for this), so perhaps as suggested this is why I'm still showing a positive result with the TTG IGA. Blah, hope I don't get anymore autoimmune conditions.


That 'splains it, Lucy!!!!! :D

Hashi's will keep tTg higher and probably won't come down further until you
get that under control. This is what happened to me also. The gluten-free diet will help with that but it can take awhile so be patient. I would suggest they run the other tests I suggested to make sure you are not ingesting gluten. Those should come down as you remain gluten-free but the tTg will be more stubborn. It can be done, though....I did!

Good luck to you.
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