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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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    • trents
      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
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      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
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      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
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      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease does damage to the small bowel lining it often results in nutritional deficiencies such as anemia. NCGS does not damage the small bowel lining so your history of anemia may suggest you have celiac disease as opposed to NCGS. But either way, a gluten-free diet is in order. NCGS can cause bodily damage in other ways, particularly to neurological systems.
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