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New Here----possible Symptoms?


dorothy13

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dorothy13 Newbie

Hi, I found this site today in my quest of trying to put "puzzle pieces" together. I'm 40+ years old.

I began experiencing fatigue 12 years ago.

Since then, I've been diagnosed with:

autoimmune hypothyroidism

morpea (autoimmune skin disorder)

severe vitamin D deficiency (had rickets during early childhood but wasn't treated)

osteopenia

migraines (averages 5 a month)

I also have chronic neck pain, muscle spasms/twitches in my middle back, middle back pain, occaisional muscle spasms in my thigh, abnormally low white blood cells that haven't been investigated, tiny white spots on my arms (I suspect vitiligo), swollen thumb joint, bloating/abdominal pain and hard stools come and go depending on my food choices, mild redness in face which worsens under heat/poor sleep/food choices. My massage therapist says my back muscles are consistent with those she treats who have fibromyalgia.

About 9 years ago I went through a long period of reoccuring sore throats, exhaustion, brain fog, flu-like pain and symptoms. Going on a low-glycemic diet and mild exercise program really helped my symptoms. I particpated in celiac testing research (out of Maryland, I think) and the test came back negative. I've heard Dr. Kenneth Fine speak as well & he makes a lot of sense. I also went gluten-free for awhile and felt better.

I'm considering going gluten-free again to see if I can stop the migraines, spasms, back pain. Going gluten-free is such a huge commitment and I wanted to see if anyone here can relate to the symptoms I've listed.

(FWIW, I'm now on a maintance dose of prescription vitamin D 50,000U every 2 weeks and daily take 1000mg calcium/400IU vitamin D/400 mg magnesium. Finally, my bone density improved. It didn't improve on weight bearing exercise. My vitamin D is now in normal limits. I'm tested every 6 months.)

Thanks for any help!

Dorothy


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    • trents
      Possibly. Your total IGA (Immunoglobulin A, Qn, Serum) is actually high so you are not IGA deficient. In the absence of IGA deficiency, the most reliable celiac antibody test would be the t-Transglutaminase (tTG) IgA for which your score is within normal range. There are other things besides celiac disease that might cause an elevated DGP-IGA (Deamidated Gliadin Abs, lgA) for which you do have a positive score. It might also be of concern that your total IGA is elevated as that can indicate some other health problems, some of which are serious.  Had you been practicing a gluten free or a reduced gluten free diet prior to the blood draw? Talk to your physician about these things. I would also seek an endoscopy/biopsy of the small bowel to check for damage to the villous lining, which is the gold standard diagnostic test for celiac disease.
    • MicG
      Test results as follows: Deamidated Gliadin Abs, lgA 40 H (normal range 0-19) Deamidated Gliadin Abs, IgG 4 (0-19) t-Transglutaminase (tTG) IgA <2 (0-3) t-Transglutaminase (tTG) IgG <2 (0-5) Endomysial Antibody IgA Negative (Negative) Immunoglobulin A, Qn, Serum 535 H (87-352) Do I have celiac?
    • catnapt
      how long does it take for the genetic blood test for celiac to come back? I saw the GI today, she was great. She says I def have an issue with gluten and that my symptoms align more with celiac disease than NCGS, so she's doing the genetic testing, Ordered a test for SIBO but said that's just to cover all bases, she doesn't think I have that. If the blood work comes back negative for the genes, then I will cancel the endoscopy. If positive, I will try the 2 week gluten challenge and get the endoscopy done. If I can't manage the gluten challenge (I had HORRIBLE symptoms last time and quit after 12 days) then we'll just assume it's celiac disease and go from there. She says she does a full nutrient panel on all her pts every year, that was nice to hear.I'm on so many supplements it would be nice to only have to get the ones I truly need! so yeh, really anxious about the test results for the genes!! I have an identical twin sister so I'd need to tell her if it's positive, she'd prob want to get tested too. *interesting note: when I said if the blood work comes back that I don't have the genes, then I'm in the clear - she said, well,,,,,,not necessarily. But she didn't want to go into as we had a lot to go over. I did make a  mental note of that comment and will ask her when I see her next time.   she was very thorough! I was impressed! she even checked- up on some lab work I had done that my Endo ordered. I like her, I am looking forward to seeing her again. I think I'll get some good advice and info from her she also complimented me on my diet.   said it was a very gut friendly and healthy diet 
    • Scott Adams
      I'm not sure why "colonoscopy" keeps coming up for you, again it would be an endoscopy to diagnose celiac disease, but it seems that Kaiser should still have your records. If you were diagnosed by them in the 1990's using a blood test and endoscopy, then you definitely have celiac disease, and hopefully you've been gluten-free since that time. You should be able to contact Kaiser for those records.
    • Russ H
      This sounds like a GP who is ignorant regarding coeliac disease. The risk with consuming gluten for several days is that it triggers the coeliac immune response, leading to raised auto-antibodies and active disease for several months. People may not even be aware of symptoms during this process, but it is causing damage to the body. As trents has said, the gut lining normally recovers on a strict gluten-free diet, and this happens much faster in children than in adults.
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