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Dieticians


Newbee

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Newbee Contributor

For those that have been to see a dietician for celiac, I'm curious what your experience was like. Was that person helpful besides telling you what food does not contain gluten (I know that much). I'm curious if they can help suggest alternate foods to eat when you have intolerances. Perhaps help you figure out what those intolerances are without doing an elimination diet. Also did they recommend tests to your doctor for vitamin deficiencies? And if so were they specific (found out my main doctor didn't know all the blood tests to request for me when I asked her to test B12 - trying to find someone who should know this). Thanks!


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love2travel Mentor

My experience has been excellent. My dietitian attends all our local group's celiac meetings which is awesome so she gets a first-hand experience on everything celiac related. She did recommend that I request specific bloodwork to check on all vitamin deficiencies (I requested D3, B12, Zinc, Iron - perhaps more). Thankfully my doctor is very aware as well so he knew precisely what to do! :)

Newbee Contributor

Good to hear love2travel! Do you know when they checked your B12 did she also request you get your homocystein checked? I understand that should be requested with a B12 check, but when I asked my doc for a B12 test she didn't know to ask for this.

1974girl Enthusiast

When we went she asked me my dd favorite foods and then she gave me subs. It was the same day as her diagnosis so I was starting at zero. She had celiac herself so the best part was just letting me know this was not the end of the world. I was supposed to go back but I think I have a handle on it now.

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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
      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
      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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