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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
      You might consider asking for a referral to a RD (Registered Dietician) to help with food choices and planning a diet. Even apart from any gluten issues, you will likely find there are some foods you need to avoid because of the shorter bowel but you may also find that your system may make adjustments over time and that symptoms may improve.
    • Ello
      I wish Dr’s would have these discussions with their patients. So frustrating but will continue to do research. Absolutely love this website. I will post any updates on my testing and results.  Thank you
    • trents
      Losing 12" of your small bowel is going to present challenges for you in nutritional uptake because you are losing a significant amount of nutritional absorption surface area. You will need to focus on consuming foods that are nutritionally dense and also probably look at some good supplements. If indeed you are having issues with gluten you will need to educate yourself as to how gluten is hidden in the food supply. There's more to it than just avoiding the major sources of gluten like bread and pasta. It is hidden in so many things you would never expect to find it in like canned tomato soup and soy sauce just to name a few. It can be in pills and medications.  Also, your "yellow diarrhea, constipation and bloating" though these are classic signs of a gluten disorder, could also be related to the post surgical shorter length of your small bowel causing incomplete processing/digestion of food.
    • Ello
      Yes this information helps. I will continue to be pro active with this issues I am having. More testing to be done. Thank you so much for your response. 
    • trents
      There are two gluten-related disorders that share many of the same symptoms but differ in nature from each other. One is known as celiac disease or "gluten intolerance". By nature, it is an autoimmune disorder, meaning the ingestion of gluten triggers the body to attack it's own tissues, specifically the lining of the small bowel. This attack causes inflammation and produces antibodies that can be detected in the blood by specific tests like the TTG-IGA test you had. Over time, if gluten is not withheld, this inflammation can cause severe damage to the lining of the small bowel and even result in nutrient deficiency related health issues since the small bowel lining is organ where all the nutrition found in our food is absorbed.  The other is NCGS (Non Celiac Gluten Sensitivity or just "gluten sensitivity") which we know less about and are unsure of the exact mechanism of action. It is not an autoimmune disorder and unlike celiac disease it does not damage the lining of the small bowel, though, like celiac disease, it can cause GI distress and it can also do other kinds of damage to the body. It is thought to be more common than celiac disease. Currently, we cannot test for NCGS. Celiac disease must first be ruled out to arrive at a diagnosis of NCGS. Both disorders require elimination of gluten from the diet.  Either of these disorders can find their onset at any stage of life. We know that celiac disease has a genetic component but the genes are inactive until awakened by some stress event. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% develop active celiac disease. The incidence of NCGS is thought to be considerably higher. I hope this helps.
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