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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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    • xxnonamexx
      What about digestive enzymes that I hear help? I take align 5x probiotics daily.
    • Samanthaeileen1
      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve.    thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poop! She has the weirdest poop issues.    How long did it take y'all to start seeing improvement in symptoms? 
    • Wheatwacked
      My son was diagnosed when he was weaned in 1976 after several endoscopies.  Given your two year old's symptoms and your family history and your pediatrition advocating for the dx, I would agree.  Whether an endoscopy is positive or negative is irrelevant.   That may happen even with endoscopy.  Pick your doctors with that in mind. In the end you save the potential trauma of the endoscopy for your baby.   Mine also had really nasty poop.  His doctor started him on Nutramigen Infant because at the time it was the only product that was hypo allergenic and had complete nutrition. The improvement was immediate.
    • RMJ
      So her tissue transglutaminase antibody is almost 4x the upper end of the normal range - likely a real result. The other things you can do besides an endoscopy would be: 1.  Genetic testing.  Unfortunately a large proportion of the population has genes permissive for celiac disease, but only a small proportion of those with the genes have it. With family history it is likely she has the genes. 2.  Try a gluten free diet and see if the symptoms go away AND the antibody levels return to normal. (This is what I would do). Endoscopies aren’t always accurate in patients as young as your daughter. Unfortunately, without an endoscopy, some doctor later in her life may question whether she really has celiac disease or not, and you’ll need to be a fierce mama bear to defend the diagnosis! Be sure you have a good written record of her current pediatrician’s diagnosis. Doing a gluten challenge for an endoscopy later in life could cause a very uncomfortable level of symptoms.   Having yourself, your husband and your son tested would be a great idea.  
    • Samanthaeileen1
      here are the lab ranges.  Normal ranges for tissue transglutaminase are: <15.0 Antibody not detected > or = 15.0 Antibody detected normal for endomysial antibody is < 1.5. So she is barely positive but still positive. 
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