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Non-celiac, But Gluten Free....


jajus100

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jajus100 Apprentice

Well, I tested negatively for the Ttg test. I was postive on the Antigliadin IGG, but that was the only one. My GI basically said that test was worthless. My general was the one who first suspected Celiac and tested me for it. My GI said it was impossible because the ttg was negative. Well anyway, while I was being tested in all kinds of ways from my GI, except for endoscopy, I experimented with gluten. I would go off it for 2 weeks, I would get better. I would eat a lot of bread for 2 weeks and I would get sick.... My GI, basically said, well, he doesn't think that would be it, but if I believe it kind of thing... UGH... Anyway, he has dismissed me, since he couldn't "find the cause."

I have now been gluten free for a little while. ALL of my gastrointestinal symptoms are gone. I now have my energy back. I still don't know what I have, but I guess it doesn't matter if gluten free seems to be the answer...


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Nancym Enthusiast

Yeah, its sort of hard to argue with the body. I found out I'm not digesting milk correctly either. Amazing how much better I feel since giving that one up too!

Nantzie Collaborator

Yea, at this point, I've tested neg TTG on the York home test, and low on the IgG and IgA, so I'm pretty much expecting that I'll have a negative biopsy, therefore, not celiac.

BUT, I feel like a completely different person off gluten, and it's obvious to me that my body, my intellect and my psyche are all negatively effected by gluten.

So, the doctors can call it whatever they want. But I'm not eating gluten anymore after the biopsy. I just feel better mentally, physically and intellectually. That's all I need.

In the book Dangerous Grains, they call it non-celiac gluten sensitivity.

I think that when all is said and done, and the doctors, researchers and geneticists all figure all this out, I think that gluten-related disorders will be a group of conditions. Not just celiac-positive or celiac-negative. I figure that 100 years ago there are diseases, medicines and treatments we all know about that they had never heard of. 100 years from now, it will be the same story. Science is an evolution. We just happen to be at the beginning of this particular story.

I think there are tons of people out there who have symptoms of celiac, but were negative on the biopsy and/or blood tests, and are suffering needlessly and still looking for answers because they never tried going gluten-free for a while just to see how they FELT.

Nancy

jerseyangel Proficient
I think there are tons of people out there who have symptoms of celiac, but were negative on the biopsy and/or blood tests, and are suffering needlessly and still looking for answers because they never tried going gluten-free for a while just to see how they FELT.

Nancy

Listening to your own body--I couldn't agree more.

nettiebeads Apprentice

My dr agrees with me that the tests just aren't sophisticated enough yet to get all of the answers. But you've proved your point with the diet challenge. I still can't understand why so many dr's want to be able to fix things with meds or surgery or some sort of regime while the diet works wonders!!! It's a good thing you have enough sense to listen to your body. I never had any tests, just the diet challenge and that was enough for me. Later I might get my gene testing done, and my dd's too because she's having some problems and I just want to have a better understanding of what might happen to her in the future.

GC1 Rookie

We haven't tested her, but fairly sure my 'better-half' isn't Celiac... but seeing my turnabout, she decided to go gluten/wheat free as well. She started about 1 month behind me, so it's been 4 months. She just turned 50, but she [now] looks 10 years younger from kicking the bread... which is not particularly good for many/most people, IMHO. Especially that made from the current hybrids, processed to death, and made into a near worthless food by the time it reaches "end product".

Where it also makes/made a big difference is; she has Type O blood, which Dr. D'Adamo says do very poorly eating wheat products. Unfortunately, he didn't mention Celiac in his "Eat Right 4 Your Type" book, or I'd known about this disease years ago. But then again, if I hadn't been eating less bread 'cause of his book, I might not be here at all!

:-)

GC

Rusla Enthusiast

For all the education doctors have they aren't that smart, generally speaking I would rather see a veterinarian. Listening to your body is the best idea. The tests are not that good, I had to pressure the doctor to get them to do something in two instances this year. Getting better shouldn't have to be this difficult if doctors would listen. I have been gluten-free just over a month and many people see the difference and tell me how much better I look. I also feel better and my DH is cleared up unless I get exposed to wheat/gluten. On top of that so far I have lost 23 pounds.


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Nadtorious Rookie

My blood tests came back negative, but my WONDERFUL GI initially based my diagnosis on the fact that my period, which had disappeared for 3 years, finally returned after only a week on a gluten-free diet. Later, my endoscopy proved it, but only because my mother insisted I have it done :blink: . Listen to your body.

Nadia

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      Welcome to the celiac.com community, @JudyLou! There are a couple of things you might consider to help you in your decision that would not require you to do a gluten challenge. The first, that is if you have not had this test run already, is to request a "total IGA" test to be run. One of the reasons that celiac blood antibody tests can be negative, apart from not having celiac disease, that is, is because of IGA deficiency. If a person is IGA deficient, they will not respond accurately to the celiac disease blood antibody tests (such as the commonly run TTG-IGA). The total IGA test is designed to check for IGA deficiency. The total IGA test is not a celiac antibody test so I wouldn't think that a gluten challenge is necessary. The second is to have genetic testing done to determine if you have the genetic potential to develop celiac disease. About 30-40% of  the general population have the genetic potential but only about 1% actually develop celiac disease. So, genetic testing cannot be used to diagnose celiac disease but it can be used to rule it out. Those who don't have the genetic potential but still have reaction to gluten would not be diagnosed with celiac disease but with NCGS (Non Celiac Gluten Sensitivity).  Another possibility is that you do have celiac disease but are in remission. We do see this but often it doesn't last.
    • JudyLou
      Hi there, I’m debating whether to consider a gluten challenge and I’m hoping someone here can help with that decision (so far, none of the doctors have been helpful). I have a history of breaking out in a horrible, burning/itchy somewhat blistering rash about every 8 years. This started when I was in my early 30’s and at that point it started at the ankles and went about to my knees. Every time I had the rash it would cover more of my body, so my arms and part of my torso were impacted as well, and it was always symmetrical. First I was told it was an allergic reaction to a bug bite. Next I was told it was eczema (after a biopsy of the lesion - not the skin near the lesion) and given a steroid injection (didn’t help). I took myself off of gluten about 3 weeks before seeing an allergist, just to see if it would help (it didn’t in that time period). He thought the rash looked like dermatitis herpetiformis and told me to eat some bread the night before my blood tests, which I did, and the tests came back negative. I’ve since learned from this forum that I needed to be eating gluten daily for at least a month in order to get an accurate test result. I’m grateful to the allergist as he found that 5 mg of doxepin daily will eliminate the rash within about 10 days (previously it lasted for months whether I was eating gluten or not). I have been gluten free for about 25 years as a precaution and recommendation from my doctor, and the pattern of breaking out every 8 years or so remains the same except once I broke out after just one year (was not glutened as far as I know), and now it’s been over 9 years. What’s confusing to me, is that there have been 3 times in the past 2 years when I’ve accidentally eaten gluten, and I haven’t had any reaction at all. Once someone made pancakes (they said they were gluten-free, they were not) and I ate several. I need to decide whether to do a gluten challenge and get another blood test. If I do, are these tests really accurate? I’m also concerned that I could damage my gut in that process if I do have celiac disease. My brother and cousin both had lymphoma so that’s a concern regarding a challenge as well, though there is a lot of cancer in various forms in my family so there may be no gluten connection there. Sorry for the ramble, I’m just doubting the need to remain gluten free if I don’t have any reaction to eating it and haven’t had a positive test (other than testing positive for one of the genes, though it sounds like that’s pretty common). I’d appreciate any thoughts or advice! 
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