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Veteran Celiacs

jerseyangel

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jerseyangel Proficient
jerseyangel
Posted

As discussed on another thread, we thought it would be interesting to hear any tips, stories, or encouragement from the "veteran celiacs" here. Really--anything you can offer would be great :)

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DingoGirl Enthusiast
DingoGirl
Posted
As discussed on another thread, we thought it would be interesting to hear any tips, stories, or encouragement from the "veteran celiacs" here. Really--anything you can offer would be great :)

Aaagh! You read my mind!! :)

MallysMama Explorer
MallysMama
Posted

I don't feel old enough to be considered a "vetern celiac" - I am only 22 - but I was diagnosed with Celiac Sprue when I was 18 months old (when it was very rare and they didn't know a lot about it). I, of course, don't remember details of what I went through, but my mom wrote down the "story" for me and the nightmare they went through. I saw a lot of doctors and was tested for everything from leukemia to ghiardia before my parents finally found a doctor who knew about Celiac and recognized my symptoms. Pictures from that time show me looking like the ehtiopian babies you see in National Geographic - my stomach was huge and my arms and legs were rail thin. They told me that there were so many days where they thought that day would be my last. To my knowledge, after finally recovering, I haven't seen another doctor about this disease since.

I'm not sure how much help I can be on this site - because I'm not very good at eating what I should and staying away from what I shouldn't. I, lately, have been having a lot of questions of my own - since there are so many new findings on Celiac since I last saw a doctor about it. Since I "cheat" on my diet all the time, there are lots of days where I don't feel any effects from it - so I wonder if I've gained a tolerance for it or if it went away? Or am I constantly hurting myself, even if I don't feel it, beyond repair?

I would love to hear all the "newbies" stories of discovering they have Celiac (and the veterans stories as well)....because I have distanced myself from the disease in the past and I'd like to "reconnect" now. :)

aikiducky Apprentice
aikiducky
Posted

It's seems very common that people are able to tolerate some gluten in their teens and twenties, and then get sick again in their thirties. When you're young, your body is still quick about repairing itself.

Pauliina

jerseyangel Proficient
jerseyangel
Posted
  • Author

I experienced that--I had a lot of stomach problems when I was a child. I even fainted at church once when I was around 10 or so. But my teen years were great--I don't remember any problems then. It wasn't until the C-section birth of my 2nd. son when I was 29 that I begen to have stomach problems and anemia again.

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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

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