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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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      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
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    • knitty kitty
      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
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      Food and environmental allergies involve IgE antibodies.  IgE antibodies provoke histamine release from mast cells.   Celiac disease is not always visible to the naked eye during endoscopy.  Much of the damage is microscopic and patchy or out of reach of the scope.  Did they take any biopsies of your small intestine for a pathologist to examine?  Were you given a Marsh score? Why do you say you "don't have intestinal damage to correlate with lifelong undiagnosed celiac disease"?   Just curious.  
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