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Still having symptoms

CorgisInOregon
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CorgisInOregon Newbie
CorgisInOregon
Posted

Hi all,

I am new in my diagnosis. I’ve been eliminating gluten for four months, but have still had many times where I have eaten gluten accidentally.

I’ve been working hard to make sure I don’t accidentally eat gluten, or eat something that has been cross contaminated with gluten. However I still have days where I end up with a horrible stomach ache. It doesn’t feel the same as when I get gluttened.

(I’ve also learned that I have other food allergies, like dairy, so I stay clear of those foods as well.)

Is it normal to still have stomach pain/bloating/indigestion even after eliminating gluten from your diet? 
 

thanks!

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Scott Adams Grand Master
Scott Adams
Posted

Recovery can take an average of 2 years IF you are 100% gluten-free. Many people take enzymes like GliadinX (they are a sponsor here) to help them deal with cross-contamination if they eat outside their homes...there are many studies that support their use for small amounts of accidental gluten:

https://www.celiac.com/search/?q=gliadinx&quick=1&type=cms_records2

Above all, you need to be 100% gluten-free, and you may also need to eliminate other things, at least temporarily, like cow's milk, corn, soy, etc., until you've fully healed.

CorgisInOregon Newbie
CorgisInOregon
Posted
  • Author

Thank you for the information. So is it normal to have flare ups during the recovery process? 

DJFL77I Experienced
DJFL77I
Posted

i'm at 5 months and i still have upset stomach..  not as bad as it was a few months earlier though..  its improving.. 

My Dr said 6 - 12 months.....

and don't eat at restaurants...

i never eat out... only fresh foods...

the only "packaged" foods i eat right now is:  Greek Yogurt / certified gluten free,  Bryers vanilla ice cream lactose free / gluten free,  and plain potato chips certified gluten free with only 3 ingredients, organic potatoes, sea salt, sunflower oil..

dairy doesn't bother me

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  • Recent Activity

    1. trents
      - trents replied to Ello's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      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
      7

      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
    3. trents
      - trents replied to Ello's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      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...
    4. Ello
      - Ello replied to Ello's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Small Bowel Resection 12 inches

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

      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...
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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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