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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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    • Zuma888
      Thank you Scott for your helpful response! Based on this, would you say someone who is on a gluten-free diet - but not strict about cross-contamination and occasional cheating - and tests negative for tTg-IgA while having normal total IgA is not likely to have celiac, even if they have been 'gluten-free' for years?
    • Scott Adams
      That’s a really insightful observation about antibody testing and the gluten challenge! You’re absolutely right that antibody levels can remain elevated for months or even years after going gluten-free, especially if there’s ongoing cross-contamination or occasional slip-ups. The immune system doesn’t reset overnight—it can take time for antibodies like tTG-IgA to normalize, which is why many doctors recommend waiting at least 6–12 months of strict gluten-free eating before retesting. For someone who’s been gluten-free for less than two years or hasn’t been meticulous about avoiding cross-contact, there’s absolutely a chance they’d still test positive, since even small amounts of gluten can keep antibodies elevated. This is partly why the gluten challenge (where you eat gluten before testing) exists—it’s designed to provoke a measurable immune response in people who’ve been gluten-free long enough for antibodies to drop. But you raise a great point: the challenge isn’t perfect, and false negatives can happen if the timing or amount of gluten isn’t sufficient to trigger a strong antibody response. This is why diagnosis often combines antibody tests with other tools like genetic testing or endoscopy. Your question highlights just how nuanced celiac testing can be! For people with celiac disease hidden gluten in their diets is the main cause of elevated Tissue Transglutaminase IgA Antibodies (tTG-IgA), but there are other conditions, including cow's milk/casein intolerance, that can also cause this, and here is an article about the other possible causes:      
    • Betsy Crum
      Thank you for your response! I have considered starting a food diary in the past, I suppose this is as good a time as any to start.  
    • Betsy Crum
      I don't have health insurance so I have never had any testing done. I always thought if I stay away from gluten Ill be fine but I suppose that isn't enough anymore. I will look into getting an allergy test. Thank you for your input! 
    • trents
      I remember reading an article summarizing testing done by Gluten Free Watchdog on several brands of dried lentils. They were all heavily cross contaminated with wheat and the commentary was to the effect that dried lentils in general were the most heavily cross contaminated product category in their testing data base. So, I would definitely not use any dried lentil product that was not tested to be Gluten Free (<20ppm of gluten) or Certified Gluten Free (<10ppm of gluten).
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