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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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      Two months ago, I started taking Dupixent for dermatitis herpetiformis and it has completely cleared it up. I can't believe it! I have had a terrible painful, intensely itchy rash for over a year despite going fully gluten-free. See if your doctor will prescribe Dupixent. It can be expensive but I am getting it free. When the dermatitis herpetiformis was bad I could not do anything. I just lay in bed covered in ice packs to ease the pain/itching and using way too Clobetasol. Dapsone is also very good for dermatitis herpetiformis (and it is generic). It helped me and the results were immediate but it gave me severe anemia so the Dupixent is better for me. Not sure if it works for everyone. I cannot help with the cause of your stress but from experience I am sure the severe stress is making the celiac and dermatitis herpetiformis worse. Very difficult for you with having children to care for and you being so sick. Would this man be willing to see a family therapist with you? He may be angry at you or imagine that your illness is a psychosomatic excuse not to take care of him. A therapist might help even if he won't go with you. Also do you have any family that you could move in with (with the kids) for a short time to get away? A break may be good for you both.
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    • RMJ
      I think your initial idea, eat gluten and be tested, was excellent. Now you have fear of that testing, but isn’t there also a fear each time you eat gluten that you’re injuring your body? Possibly affecting future fertility, bone health and more? Wouldn’t it be better to know for sure one way or the other? If you test negative, then you celebrate and get tested occasionally to make sure the tests don’t turn positive again. If you test positive, of course the recommendation from me and others is to stop gluten entirely.  But if you’re unable to convince yourself to do that, could a positive test at least convince you to minimize your gluten consumption?  Immune reactions are generally what is called dose response, the bigger the dose, the bigger the response (in this case, damage to your intestines and body). So while I am NOT saying you should eat any gluten with a positive test, the less the better.  
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