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Member Since 11 Mar 2013
Offline Last Active Mar 20 2013 09:32 PM

Topics I've Started

What's My Next Step?

11 March 2013 - 02:34 PM

So here's my story! About 12 years ago I started experiencing extreme fatigue, and very uncomfortable (sometimes painful) bloating and excessive gas (flatulence) pretty much on a daily basis! I also suffered from depression & anxiety, occasional headaches and nosebleeds, lightheadedness, and difficulty concentrating. It got to the point where I withdrew from friends and others in my life and barely left the house! I even took a leave of absence from work while trying to figure out with the doctors what was going on! After rounds of tests, going to see specialists, an endoscopy (not sure if they did biopsy for celiac disease, but probably not 12 yrs ago!) and colonoscopy, all they could come up with was IBS and reflux! I tried anti-anxiety meds, enzymes, charcoal tablets, acupuncture, and so on and so on! And when NOTHING seemed to help, I finally just gave up and figured I would have to live like this from now on!

Then a few years back while doing some online research, I came across a website about Celiac Disease! My mouth opened wide, while I checked off more than half of the symptoms listed, that I could relate too! I said, "aha, I think I found my answer"! But unfortunately convincing the doctors of this proved a lot harder then I imagined! When I asked to get the blood test, they refused, and told me to just go on a gluten free diet and see how I feel! I had already read that by doing that, it could render future testing with a false negative! But I was so miserable I decided to try it anyways! It wasn't for too long, maybe 3 week increments for 3 to 4 months and I did notice slight improvement.

Then came the new year! I vowed to make 2013 the year I get my answers! So at my last checkup, I told my doctor of my decade long struggles and DEMANDED the blood test! She agreed all though, flat out said she didn't believe I had Celiac because I don't fit the "typical" criteria of the disease! She also tested me for a battery of other things, like thyroid, anemia, vitamin D etc.

After getting the blood work done I continued to read about so many people having False Negative results and also that it's hard to find an understanding doctor! Boy can I relate! I got all my test results back and then the doctor contacted me with just a basic, all labs are fine except Vitamin D is low, and put me on supplements. NO explanation as to maybe WHY it is low! I had to do my own digging again and to what do I find? A strong link to Vitamin deficiency and celiac disease!!! So I emailed my doctor back with my concerns and reasons for not being ready to rule out Celiac yet along with some links to back me up! She responds with
"As we discussed during our visit, and from what you have found in your research, many people do not have a true allergy to wheat, but are intolerant or sensitive to it. This means you should just avoid it so you can feel better."

Ugh! Am I wrong to want a definitive answer as to do I have Celiac or not? I know ultimately if I want to feel better I need to go gluten free but I wanted to make sure I exhausted all testing first as to get the most accurate results. Unfortunately my insurance covers next to nothing, so even if I could get them to agree to an endoscopy/biopsy, I most certainly cannot afford it out of pocket right now! The doctor also did not do a full celiac panel so I'm considering trying to save up for that from an outside lab, as a second opinion! This is what she tested me for and my results:

Tissue Transglutaminase IgG:
My result= 0.17 units
Standard range=

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