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Almost Diagnosed!? Kinda

Sadiepants

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Sadiepants Newbie
Sadiepants
Posted

HI all! I'm new here but I've been reading posts for several months. Heres my story, in a nutshell. About three years ago, I started having a weight problem where I could gain 40 lbs easily within several months. I'm 25 now and most of my life I've been thin, so the extra 40 lbs was frustrating. Anyways, I started having more and more weird symptoms like, cold hands and feet, racing heart, heart palps, stomach constantly in knots, not sleeping well, dizziness, eyes blurry, and massive brain fog. It got so bad, I couldn't get out of bed in fear of running my car into a tree because of how stupid I felt. I'm a full time student trying to get my doctorate, so needless to say, I cannot be in bed all day. It took me 4 doctors, and all told me I was crazy and to stay away from the drive thru (I hate fast food), and that I was a full blown hypochondriac.

OK, I'll admit, I can be a bit dramatic but I KNEW my body was telling me something was wrong. So I went to an ARNP, and she found out after the first round of blood work that she pulled what was going on. She instantly put me on a gluten free and dairy free diet. I've been on that for about 2 and half months. Here's the thing, I have not had the testing for celiac's because I don't have insurance and I'm self pay. So, the blood work I did have done showed us that I'm severely iron deficient, my ferritin was 9 and the range started at >130, I'm B12 deficient and D3 deficient. I've done a lot of research and I know that with Celiacs disease, one of the major symptoms is vitamin deficiency. So now that I'm on all supplements and eating gluten free diet (dairy free is very hard for me), I feel a lot better but would love to know if I have it or just a gluten intolerance. I went to a wedding two weeks ago and ate a lot of gluten and was sick for about a week after that. I would get tested but I heard it's very expensive self pay.

Also, I'm having mild thyroid problems. My mom is hypothyroid and IGA deficent but doesn't have celiacs.

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Dixiebell Contributor
Dixiebell
Posted

Welcome Sadiepants!

If you wanted to do the blood tests for celiac you would need to eat a lot of gluten for I think eight weeks or so and then the test could still be false negative. They are about 80% accurate.

It sounds like you did a gluten challange at the wedding and now have your answer. You can call it what you want to, no one is going to ask to see your test results.

Because we tested negative, we call ourselves non celiac gluten intolerant or just gluten intolerant. Either way, you need to not eat gluten to stay healthy.

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      Severe severe mouth pain

      By cristiana · Posted

      I agree.  If someone has Barrett's Esophagus, at least here in the UK, as I understand it under normal circumstances a PPI needs to be taken long term (or similar medication).  I have two friends with this.  The PPI it does have side effects but they still have to take it.  
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      Do talk to your doctor about making changes to your medication.    I'm not a medical doctor.   I'm a microbiologist.  I studied nutrition before switching to microbiology because I was curious what vitamins were doing inside the body. I would hate to give advice that jeopardizes your health, so do discuss things with your doctor.   
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