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Surprised...


wareagle
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Hi guys...well I finally broke down and had the blood testing done for gluten intolerance and apparently everything came back "normal". I'm actually surprised and kinda' disapointed by the results. I have several symptoms that can't really be explained by POTS (B 12 deficiancy, gall bladder disfunction, reoccuring hive on my left wrist, white specks on my finger nails, etc.) and the more I researched Celiac the more I thought that might be the answer.

After I had my blood drawn I decided to go ahead and stop consuming gluten "just in case" and even though my tests were negative I think I'm going to continue with the diet. I know a lot of follks here avoid gluten b/c they HAVE to...but I was wondering if a gluten free diet has been beneficial to anyone who ISN'T gluten intolerant? Is it still realistic for me to expect some improvement from this diet or am I just grasping at straws? <_<

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I am gluten-intolerant, but when my PCP ordered the test, she encouraged me to try a gluten-free diet even if it came back negative. She's a big fan of looking for dietary causes, so I'm not sure if a more mainstream doctor would have said the same.

It certainly seems like it would be worth a try. And if you need any ideas on what to eat, I've got lots. <_<

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Only full blown allergies will show up on a blood test. I am intolerant of wheat, but my biopsy came back clear, even though I had all the Coeliac symtoms. So I've followed a wheat free diet for years. To this day, if I consume excess gluten I bloat and bleed for days afterwards. So don't let the blood test determine it for you- you might still be heaps better without the gluten!

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I know people who are on gluten-free diets that improve symptoms with various chronic diseases, even though their tests say they aren't actually gluten-intolerant. I say whatever works is a good idea to try. It's certainly not essential to eat gluten; just make sure you get enough fiber through other grains.

Amy

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Hey Chica!

I never tested positive on the tests for celiac (blood tests). I actually also had a newer genetic test done for celiac that is not dependent on whether you are on a gluten-free diet or not and still tested negative.

When I did the bloodwork for celiac the first go around (the test you had), I was already on a gluten-free diet. I have been doing it with great success for almost 8 years now. I did an elimination diet and found it really, really helped me (whatever that means considering I am still non-functioning), but nontetheless I swear by it.

Because I was having such a reduction in stomach problems and other issues on the diet, I didn't want to go through bombarding my body with gluten just to see if I could get a positive test. Plus, the real gold standard is to actually have a colonoscopy and a tissue biopsy that way.

I decided to go with what works and my docs have really supported it. My POTS doc definitely looks inot the issue of food as a trigger, especially dairy.

I DO NOT cheat AT ALL with gluten or dairy. I'll let sly slip into something, but don't in general eat soy products, like soy cheese, tofu, etc. b/c well, it gives me gas and makes me feel gross.

Don't know if this is hleping one bit, but it can't hurt you to try gluten-free diet...it might help, can't hurt. Also, according to my POTS doc, 30% of his patients with POTS are dairy intolerant. He considers it an allergy, but it won't show up on tests b/c the reaction hits several hours after the ingestion of dairy products. The level of intolerance for each person varies...some poeple, like me, he has avoiding dairy even in medications, but others can tolerate some here and there.

I would say the same goes for gluten intolerance and how much you can cheat. But, I would eat totatlly "clean" for a good while before you try 'cheating' to see if it works for you.

If you get constipated from taking away other grains, you can take citrucel (which is gluten-free unlike metamucil) or colace or something of that sort.

I beleive that a LOT of people are intolerant to foods, but not necessarily allergic. But that's just me. I didn't believe that until I ddi the diet and now swear by it.

BTW, did you hear back from your friend after disclosing more info? I have been thinking a lot about what you borught up in that post and have a lot to say, but just haven't had the energy to post! What's new?

Okay, chica, hope this helps a little.

Miss ya!

Em

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Thanks guys! :)

I'm going to stay gluten free for awhile and see how it goes...like you said it can't hurt anything. It's been kinda' fun looking at different foods and finding new recipes. So far everything still tastes good so I think I'll stick with it!

Em,

I still haven't e-mailed my friend back...I know..I'm being a weenie!! I plan on doing it this week though so I'll let you all know how it goes. :)

Love to you all!!

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WE,

Keep us updated on how the diet goes and if you see any changes/improvements from it.

Since I started the diet the number of gluten-free products available has grown tremendously! You can now eat gluten-free and not feel (too) deprived! :)

Also, I posted to you under the Jess's post about the esophogus issues...

Later alligator!

Love, em

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I tested NEGATIVE on my celiac blood panel but after continued and worsening symptoms I had an endosopy and biopsy that was POSITIVE. My gastro is very up on gluten intoleance and says the biopsy is the gold standard. Speaking with others and with my dr., it's pretty common to have negative blood but positive biopsy when you don't have advanced disease. My gene test was negative too but they don't know all the genes related to celiac. I have been gluten free for 2 years and my gastro symptoms are much better and my follow up biopsy was clean. FYI unfortunately my POTS came on at the same time my gastro symptoms improved and according to dr. grubb, celiac sprue or any autoimmune disorder of the gut liek chrons cand be a trigger for POTS

WE,

Keep us updated on how the diet goes and if you see any changes/improvements from it.

Since I started the diet the number of gluten-free products available has grown tremendously! You can now eat gluten-free and not feel (too) deprived! :)

Also, I posted to you under the Jess's post about the esophogus issues...

Later alligator!

Love, em

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dr...

That was really interesting. I didn't think of those disorders like celiac or other autoimmune disorders being the trigger for POTS and NOT clearing up POTS symptoms once treated. I guess I always thought that if say, celiac was there, treating that (with diet of course) would then result in reduced POTS symptoms (not a cure, just reduced). Hmmmmm.....

I guess that's maybe the issue for me, I stick with the diet b/c I feel better on it in the sense that my stomach issues that had plagued me for many years virtually disappeared (other than the GB crappola) and also I stopped feeling this horrible sense of toxicity (hard to describe) and less 'heaviness' in my muscles and achiness...

I don't know how much, if at all, it's actually helped the POTS per se. But I do feel even mroe awful if I don't follow the diet strictly.

Emily

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