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Looking For Advice On Pursuing A Celiac Diagnosis

LSP2012

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LSP2012 Newbie
LSP2012
Posted

Hello,

I'm new here and very new to this lifestyle. My insurance doesn

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Cara in Boston Enthusiast
Cara in Boston
Posted

More celiacs are overweight at the time of diagnosis. Being underweight due to malabsorption IS a symptom of celiac, but not the most common.

If you don't need a formal diagnosis (for school, insurance, etc.) don't bother making yourself sick in order to be tested. Don't bother spending additional money to find out an answer you already know.

However, I would assume you have it (given your symptoms and response to the diet) and act accordingly - never cheat, encourage all first degree relatives to be tested, be aware of the symptoms of other, related autoimmune disorders, etc.

What would you do differently if the doctor told you you did indeed have celiac?

Cara

mushroom Proficient
mushroom
Posted

I agree with Cara. The diagnosis at this point would serve little purpose except to wave in the face of the ignorant doctor. You would have to eat gluten for 2-3 months to make the testing valid and cause yourself additional distress and damage in the process. Just assume you have it (even if it is non-celiac gluten intolerance the treatment is the same) and get your family tested and keep watch on your kiddos for development of any symptoms (you know what to look for now).

It is perfectly normal, once you have been gluten free, for your reaction to gluten to be stronger than it was previously. Your body is no longer worn down with all that gluten and is able to mount a more vigorous attack with fresh antibodies :)

Eat gluten free and be well.

nvsmom Community Regular
nvsmom
Posted

Hello,

I went into this assuming I was gluten intolerant. I ruled out celiac on my own because of one reason - I gained weight (about 60 pounds over 5 years, which is now coming off on its own after changing my diet). That doesn't seem to be the experience of many celiacs who lose weight due to malabsorption issues

Giambi Newbie
Giambi
Posted

I believe it's also possible to be "gluten sensitive" without actually having celiacs right???

mushroom Proficient
mushroom
Posted

I believe it's also possible to be "gluten sensitive" without actually having celiacs right???

According to today's diagnostic classifications, quite so. But the major definition of celiac disease is gastrointestinal damage, and we are now finding all the other places where it wreaks its havoc, so who is to say right now that these are not also manifestations of celiac disease as well as "sensitivity". It is an evolving area and the criteria may change over time.

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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
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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...
    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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