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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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    • Scott Adams
      In the U.S., most regular wheat breads are required to be enriched with certain B-vitamins and iron, but gluten-free breads are not required to be. Since many gluten-free products are not enriched, we usually encourage people with celiac disease to consider a multivitamin.  In the early 1900s, refined white flour replaced whole grains, and people began developing serious vitamin-deficiency diseases: Beriberi → caused by a lack of thiamin (vitamin B1) Pellagra → caused by a lack of niacin (vitamin B3) Anemia → linked to low iron and lack of folate By the 1930s–40s, these problems were common in the U.S., especially in poorer regions. Public-health officials responded by requiring wheat flour and the breads made from it to be “enriched” with thiamin, riboflavin, niacin, and iron. Folic acid was added later (1998) to prevent neural-tube birth defects. Why gluten-free bread isn’t required to be enriched? The U.S. enrichment standards were written specifically for wheat flour. Gluten-free breads use rice, tapioca, corn, sorghum, etc.—so they fall outside that rule—but they probably should be for the same reason wheat products are.
    • Scott Adams
      Keep in mind that there are drawbacks to a formal diagnosis, for example more expensive life and private health insurance, as well as possibly needing to disclose it on job applications. Normally I am in favor of the formal diagnosis process, but if you've already figured out that you can't tolerate gluten and will likely stay gluten-free anyway, I wanted to at least mention the possible negative sides of having a formal diagnosis. While I understand wanting a formal diagnosis, it sounds like she will likely remain gluten-free either way, even if she should test negative for celiac disease (Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If her symptoms go away on a gluten-free diet, it would likely signal NCGS).        
    • JoJo0611
    • deanna1ynne
      Thank you all so much for your advice and thoughts. We ended up having another scope and more bloodwork last week. All serological markers continue to increase, and the doc who did the scope said there villous atrophy visible on the scope — but we just got the biopsy pathology report back, and all it says is, “Duodenal mucosa with patchy increased intraepithelial lymphocytes, preserved villous architecture, and patchy foveolar metaplasia,” which we are told is still inconclusive…  We will have her go gluten free again anyway, but how soon would you all test again, if at all? How valuable is an official dx in a situation like this?
    • cristiana
      Thanks for this Russ, and good to see that it is fortified. I spend too much time looking for M&S gluten-free Iced Spiced Buns to have ever noticed this! That's interesting, Scott.  Have manufacturers ever said why that should be the case?  
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