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If you could correct one misconception about celiac, what would it be?

Jmg

By Jmg
in Coping with Celiac Disease

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Jmg Mentor
Jmg
Posted
  • Author

Thanks to everyone that's replied :)

I plan to sort through these and bundle them up into a big ball of helpfulness. 

For now, here's mine

 

'I wish more people were aware that a negative test for celiac doesn't equate to 'gluten is fine for you, eat as much as you want'. That may be the case and in which case tuck in, but for some people it won't be and they risk more illness and unnecessary suffering because the general understanding of NCGS and associated conditions is so poor.'

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notme Experienced
notme
Posted
17 hours ago, squirmingitch said:

But you can sure mute it with Duck tape!:lol:

hahaha, squirmy!  yup!  :D

Awol cast iron stomach Experienced
Awol cast iron stomach
Posted
22 hours ago, notme! said:

i was at a meeting recently, where they serve dinner, ironically the meeting is at a communitiy room at our local hospital (where the meal is catered by the hospital cafeteria and i do not eat BECAUSE THEY CAN'T DO GLUTEN FREE.  AT A HOSPITAL.)  but i digress....

'oh, my doctor told me i have that, too.  i just can't stop eating bread ha ha ha' as she chomps a bite of dinner roll.   worse?  she's a doctor's wife  :rolleyes:  ya can't fix stupid  ;)

Ahhh Russian roulette autoimmune style.

My money's on celiac winning!

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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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