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Help! Worse All Of A Sudden!


trishydee

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trishydee Rookie

Hi Everyone,

I don't know what's going on with me, I'm hoping you can help!

I've been strictly gluten-free for over 6 years. (I was dx'ed by both labs & biopsy) For the past few months, I've had MAJOR episodes of D, with horrible abdominal pain, bloody stools (sometimes it looks like pure blood), sweats, etc. The episodes last at least 24 hours and they usually happen a few times a week to once a week. :o Immodium helps a little.

I haven't felt this bad in years. What could be going on? I had a colonoscopy in Oct 06 and it was fine.


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gfpaperdoll Rookie

I would go back for medical tests, complete blood work up, first thing to rule out cancer or anything else...RIGHT AWAY

Then I would look at what you are eating. Have you added in anything new, or you eating replacement grains? oats? Then I would go grain free & also dairy free.

I would immediately go to your "safe" foods, & soft foods, cut out all nightshade foods, & eat a limited diet of things like (for me) cooked carrots, rice, chicken soup with cabbage, tuna or whatever protein suits you best ( not beef) etc etc oh, Baked sweet potatoes are good...

mftnchn Explorer

That really sounds awful. Have you had any testing done for something else that might be going on?

I am assuming that you have eliminated any problem foods, like "oldies" that you buy without checking labels that have switched ingredients?

Perhaps checking to see if you have developed an allergy? What I understand is that soy can also flatten the villi if you are intolerant. So an elimination process perhaps? My allergist said to first of all check the grains because they are notorious to cross react. (include checking cane sugar, which is a "grass" like the other grains). Then check legumes, and third check night-shades. Other big allergens are eggs and milk. The milk casein protein is apparently very similar to gluten.

Check by totally and strictly eliminating for at least 5 days and then not more than 10 days, then challenge the food.

Keep us posted on how you are doing, please!

Teacher1958 Apprentice
Hi Everyone,

I don't know what's going on with me, I'm hoping you can help!

I've been strictly gluten-free for over 6 years. (I was dx'ed by both labs & biopsy) For the past few months, I've had MAJOR episodes of D, with horrible abdominal pain, bloody stools (sometimes it looks like pure blood), sweats, etc. The episodes last at least 24 hours and they usually happen a few times a week to once a week. :o Immodium helps a little.

I haven't felt this bad in years. What could be going on? I had a colonoscopy in Oct 06 and it was fine.

First, as another message recommended, make an appointment immediately to have this checked, then check and re-check the labels on absolutely everything you're eating, even those foods you have always assumed were gluten free. You could even put the list on here in case someone has some ideas as to what the problem might be. There has to be an explanation.

Take care. I hope you feel better soon.

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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
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    • 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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