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Help-dh And Severe Joint Pain.........

cleanchic5

By cleanchic5
in Coping with Celiac Disease

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cleanchic5 Newbie
cleanchic5
Posted

Newly diagnosed with endo biopsy, although I have been on Dapsone for the past 11 years for DH.(dermatologist didn't stress how serious) Just became gluten free this month. I have had joint pain that came on suddenly for about two months now. I have never had GI symptoms. I have a positive ANA but can't get in to see the rheumatologist until May 21st! This pain lasts in multiple areas for about 48 hours then goes on to the next joint. I never know what I will be suffering from tomorrow. Shoulders so bad I can't move my arms, thumb joints red and swollen, my wrists, hips, feet. At night I can't even adjust the blankets in bed without wanting to cry. Did I mention I am only 36?! It seems to get somewhat better during the day when I am moving around but by night time I am severly limited. My family is sick of listening to me. Has anyone gone through this? How long before any relief? Im sick of walking around like I am 100 years old :) Any input would help me through this, thanks.

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gfpaperdoll Rookie
gfpaperdoll
Posted

Hello & welcome, just some guesses here but for joint pain I would look at giving up all dairy & all soy.

usually joint pain is caused from some food that you are eating...

the nightshade family of potato, tomato, peppers, eggplant should be checked out..

some people have a problem with corn - IMO that is the worst, I went years & could not eat corn.

personally potatoes gives me joint pain - I am also mostly grain free

I also have other food allergies.

oh yes, do not drink orange juice, it is notorious for causing joint pain - there is a scientific reason for this - which I can never remember.

keep a food journal - that will probably give you some quick clues.

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  • Recent Activity

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      - trents replied to Ello's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
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      Small Bowel Resection 12 inches

      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.
    2. Ello
      - Ello replied to Ello's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
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      Small Bowel Resection 12 inches

      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
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      - trents replied to Ello's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
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      Small Bowel Resection 12 inches

      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...
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      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.
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      - trents replied to Ello's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
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      Small Bowel Resection 12 inches

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    • trents
      Small Bowel Resection 12 inches

      By trents · Posted

      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
      Small Bowel Resection 12 inches

      By Ello · Posted

      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
      Small Bowel Resection 12 inches

      By trents · Posted

      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
      Small Bowel Resection 12 inches

      By Ello · Posted

      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
      Small Bowel Resection 12 inches

      By trents · Posted

      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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