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Years Of Symptoms...celiac? Any Advice Welcome :)

Jsjs5

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Jsjs5 Newbie
Jsjs5
Posted

Hi everyone,

I'm new to the forum and thought I would post my journey thus far for advice and/or if it could help someone else. I will try not to be too long winded :). I've been a migraine with aura and headache sufferer for about 15 years since I was middle school. I used to get leg cramps as a kid and stomach aches often after eating but those are the only problems I remember. Skip ahead until I was 22 and got mono. Shortly after recovering from that I struggled with major bouts of diarrhea and stomach cramps. At times my stomach would hurt so badly as if I was "plugged up" and finally when that passed D followed. Sometimes through the years i had had times where after etating i can barely make it to restroom and have d with sweating and cramps. Shortly after this started i gained about 40 lbs over a relatively short period and was tired all the time. I don't remember feeling depressed just tired with the regular stressors of working and going to school. Finally I was fed up with the exhaustion and went to see dr. She sort of scolded me for gaining so much weight (I obviously didn't do it on purpose and tried with exercise to get it off) and did test my tsh thyroid. I was told it was normal and that was that. I didn't know any better and didn't question it. A few years later I stopped eating wheat and noticed that headaches were less and d was less. The thought of this was not something I had even considered before but I started to do some research. Went to see my pcp and expressed what I had realized. He said that it was probably ibs but he would test me for celiac. He suggested continuing to eat that way if it made me feel better. He also again tested tsh thyroid test. Both came back negative and again I didn't question it, just relied on the fact that my dr said I was fine. I know that knowing something makes you feel bad should be good enough reason to avoid it but part of me would think that it must not be that if the test is negative. I asked him about a nutritionist and he referred me. After doing a fodmabs diet I had extreme reaction to the part involving wheat. She suggested celiac but I assured her that I was tested and it was negative so she mentioned maybe a wheat intolerance. About a year and a half ago fall had arrived and I noticed that the cold was really bothering me. I was cold all the time. Heat had always been a major bother for me but never cold. After having some difficulty falling asleep, muscle cramps, joint pain and worst of all foggy brain I went to a new dr. He was wonderful to talk to and seemed open to different things. He mentioned celiac and again I told him I had been tested and it was negative (gosh I didn't realize how many false negs come from the test plus I hadn't been eating gluten when I was tested). He tested for lupus, Lyme and vit d. I found out vitamin d was a 6 so severely low. So could vitamin d deficiency cause all these problems or could I be deficient elsewhere? How could that get so low? I decided to give the 50000 iu weekly supplements a chance and also was eating low carb, mainly gluten-free. I did seem to feel a lot better and wasn't sure if it was the d dosage or low carb or both. This past fall I started reintroducing gluten back into diet (I know why??). Well I'm sure you all know how I've been feeling lately. Was just retested for thyroid, this time with t3/4 as well, cmp, cbc with dif, and an iga and igg celiac tests. I'm waiting for the results. Part of me just wants an answer. Is there any other tests that you all think I should request based on my symptoms? Any advice would be welcome. Thanks for taking the time to read my story.

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Jsjs5 Newbie
Jsjs5
Posted
  • Author

I forgot to mention that my vitamin d was retested recently and it was again low (15) even after daily supplementation. My dr didn't seem worried.

frieze Community Regular
frieze
Posted

I forgot to mention that my vitamin d was retested recently and it was again low (15) even after daily supplementation. My dr didn't seem worried.

did they give you the little green football vitamin D?  If so, they are not the best choice.  Get D 3 from the grocery/health food store.

Jsjs5 Newbie
Jsjs5
Posted
  • Author

did they give you the little green football vitamin D? If so, they are not the best choice. Get D 3 from the grocery/health food store.

Haha yes it's def the little football ones, but the ones I was taking for daily supplementation after were over the counter d3 supplements.

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