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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
      So the tTG-IGA at 28 is positive for celiac disease. There are some other medical conditions that can cause elevated tTG-IGA but this is unlikely. There are some people for whom the dairy protein casein can cause this but by far the most likely cause is celiac disease. Especially when your small bowel lining is "scalloped". Your Serum IGA 01 (aka, "total IGA") at 245 mg/dl is within normal range, indicating you are not IGA deficient. But I also think it would be wise to take your doctor's advice about the sucraid diet and avoiding dairy . . . at least until you experience healing and your gut has had a chance to heal, which can take around two years. After that, you can experiment with adding dairy back in and monitor symptoms. By the way, if you want the protein afforded by dairy but need to avoid casein, you can do so with whey protein powder. Whey is the other major protein in dairy.
    • jenniber
      hi, i want to say thank you to you and @trents   . after 2 phone calls to my GI, her office called me back to tell me that a blood test was “unnecessary” and that we should “follow the gold standard” and since my biopsy did not indicate celiac, to follow the no dairy and sucraid diet. i luckily have expendable income and made an appt for the labcorp blood test that day. i just got my results back and it indicates celiac disease i think 😭   im honestly happy bc now i KNOW and i can go gluten free. and i am SO MAD at this doctor for dismissing me for a simple blood test that wouldn’t have cost her anything !!!!!!!!!!! im sorry, im so emotional right now, i have been sick my whole life and never knew why, i feel so much better already   my results from labcorp:   Celiac Ab tTG TIgA w/Rflx Test Current Result and Flag Previous Result and Date Units Reference Interval t-Transglutaminase (tTG) IgA 01 28 High U/mL 0-3 Negative 0 - 3 Weak Positive 4 - 10 Positive >10 Tissue Transglutaminase (tTG) has been identified as the endomysial antigen. Studies have demonstrated that endomysial IgA antibodies have over 99% specificity for gluten sensitive enteropathy. Immunoglobulin A, Qn, Serum 01 245 mg/dL 87-352
    • JoJo0611
      Thank you this really helped. 
    • Samanthaeileen1
      Okay that is really good to know. So with that being positive and the other being high it makes sense she diagnosed her even without the endoscopy. So glad we caught it early. She had so many symptoms though that to me it was clear something was wrong.   yeah I think we had better test us and the other kids as well. 
    • GlorietaKaro
      One doctor suggested it, but then seemed irritated when I asked follow-up questions. Oh well—
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