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Need Help With Symptoms


Trying2GetHelp

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Trying2GetHelp Newbie

After searching for a year (in particular) for problems that seemed to flare after a life-time of one-at-a-time symptoms, my newest specialist in an endocronologist who has already determined that my Vit D level is basically non-existant, I have weakness in my left leg and foot, I am very likely suffering from some sort of thyroid deficiency, celiac disease (?), a possible pituary problem, and a whole host of other things (I didn't know there WERE other things), that I have not complained about.

I did notice that, for the last two days, everytime I eat bread, I end up in the bathroom. I've always attributed it to an allergy to milk fat (all dairy, including pizza), but lately I had noticed - but not enough - that it seemed to be happening alot, no matter what I ate.

Tonight, I have a symptom that I've had many times before, but no one has been able to help me. From research on this site, I think it might be related to this forum.

1. VERY itchy fingers (one to start)

2. Hands get BRIGHT red and swollen

3. Index finger(s) appear to get painful bumps just at the first crease -- where your laces would lie when you tie your shoe. Those bumps start to itch, then get painful for a few days, then go back down to normal.

4. Sometimes RED, SWOLLEN hands take on a "waxy" appearance -- water won't penetrate. (This hasn't happened in quite a while, but when it does, it happens to my feet, too .....)

Are we actually ON TO something?


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nvsmom Community Regular

I haven't experienced that symptom myself, but perhaps someone else will chime in.

I wanted to say good luck with the celiac and thyroid testing, and make sure you keep eating gluten until your testing is done.

JessF Rookie

Hi there,

I have some wierd finger/hand symptoms too. My palms are red also. My hands go from being cold and wrinkled to warm and swollen like you describe with a waxy type appearance. They hurt and are very sensitive too. I am hoping this is celiac which I have my endoscopy in a week to confirm the diagnosis. I have also been borderline hypothyroid after having thyroiditis two years ago. I am waiting on the celiac diagnosis and then will get my bloodwork done again for hypoT to see if I need to be on medications for that. Good luck!

Jess

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    • par18
      Thanks for the reply. 
    • Scott Adams
      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
    • Scott Adams
      Yes, I meant if you had celiac disease but went gluten-free before screening, your results would end up false-negative. As @trents mentioned, this can also happen when a total IGA test isn't done.
    • Seaperky
      I found at Disney springs and Disney they have specialist that when told about dietary restrictions they come and talk to you ,explain cross contamination measures tsken and work with you on choices. Its the one place I dont worry once I've explained I have celiac disease.  Thier gluten free options are awesome.
    • Churley
      Have you tried Pure Encapsulations supplements? This is a brand my doctor recommends for me. I have no issues with this brand.
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