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Gluten Sensitive


HydraWoman

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HydraWoman Rookie

I was tested for Celiac disease this summer. First a blood test and then an endoscopy. My results were negative on both tests. I first tried a gluten free diet about two years ago with amazing results. I started back this month on becoming gluten free again.

My doctors and I think it is for the best because a gluten free diet helps me manage my irritable bowel and mood better (I have bipolar disorder). The g.i. doc says that my symptoms do point to my sensitivity to gluten and he encouraged me to go gluten free again. In just a few short weeks I have a lot less anxiety, no depression, good solid stable mood, virtually no symptoms of ibs, I am losing weight, I am sleeping better, I have more energy, exercise does not seem as strenuous and this might sound odd but I feel more creative and have been spending time on hobbies.

I really like reading all the posts here. I have learned a lot about eating correctly for my body and I hope I am still welcome to post here even though I do not have Celiac disease.


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darlindeb25 Collaborator

That's wonderful, and you have a very good doctor. There are still many doctors out there that feel, if you do not have celiac, then gluten doesn't matter. That's just not true. Celiac disease is just a tiny part of the gluten intolerance spectrum. When gluten intolerant, there are many other diseases and syndromes a person may develop other than celiac. Celiac disease is not the end stage of gluten intolerance, there are many other auto-immune diseases a person can have other than celiac. I have sensory and axonal neuropathy, along with gluten ataxia because of my gluten intolerance. It's the vitamin and mineral deficiencies caused by gluten intolerance that causes these other diseases. Gluten is the actual problem...ruling out celiac is just the beginning.

With more and more research, and people finally figuring this gluten monster out pretty much on their own, we are finding very different levels of gluten intolerance. Many of us whom are not celiac, are much more sensitive to gluten, then many celiac's are. Most of the labeled "gluten free" foods still contain a level of gluten that scientists feel is safe for a person who is gluten intolerant. But is it really safe for us to eat any gluten?? I know it's not for me. How many of us are damaging our bodies further simply because someone is telling us it's safe? How many people actually listen to their doctor when s/he says, "You do not have celiac disease, don't worry about gluten, it's not the problem", when it actually is the problem, just not celiac? Much more research needs to be done on non celiac gluten intolerance.

Good luck, and I am happy you are feeling so much better. If you feel this much better in just a few short weeks, just think what you have to look forward to! :D

ang1e0251 Contributor

Of course you are welcome here! This isn't an elite forum just for a small select group. It's for anyone who wants to know more about this disease and all it's myriad of levels. As mentioned, gluten sensitivity is such a huge iceberg of a problem that as a society, we really are only seeing the very tip. In fact for many, it something they have never even heard of. We all have a lot to learn and I can see by your post you have a lot to offer others. Thanks for being a part of the group!

ravenwoodglass Mentor

In addition there are a lot of false negatives in both blood and biopsy for a nunber of reasons. You very well be a celiac but the real test of whether you need to be gluten free is your bodies response to the diet. Welcome to the board and I am glad to hear that you are feeling better.

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    • knitty kitty
      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
    • knitty kitty
      Food and environmental allergies involve IgE antibodies.  IgE antibodies provoke histamine release from mast cells.   Celiac disease is not always visible to the naked eye during endoscopy.  Much of the damage is microscopic and patchy or out of reach of the scope.  Did they take any biopsies of your small intestine for a pathologist to examine?  Were you given a Marsh score? Why do you say you "don't have intestinal damage to correlate with lifelong undiagnosed celiac disease"?   Just curious.  
    • rei.b
      I was tested for food allergies and environmental allergies about 7 months before I started taking Naltrexone, so I don't think that is the cause for me, but that's interesting!  The main thing with the celiac thing that is throwing me off is these symptoms are lifelong, but I don't have intestinal damage to correlate with lifelong undiagnosed celiac disease.
    • trents
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