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Recently diagnosed - Question about vitamins


rt-116

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rt-116 Explorer

Just wondering what vitamins people were advised to take after diagnosis? I am anemic so think I need to improve my iron, presuming low on b12 and D but am yet to have full vitamin checks. Obviously will have these checked soon. 

Of course will vary for all, but just curious about the advice given to others prior to seeing my GP again. 

If you do take vitamins, when is the best time to take them for the best absoption benefits etc? 

Thank you for any help! 


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Fenrir Community Regular

I would wait and see what you're deficient in. Many Celiacs are deficient in Vitamin D and B12 but each person is different. 

cyclinglady Grand Master

Do not just take a vitamin because you are anemic.  Your doctor should be able to tell you which kind of anemia you have (there are many types).  For example, I was very anemic. My doctors knew that I had a genetic anemia called Thalassemia which there is nothing to be done except for blood transfusions when medically necessary.  It masked my iron-deficiency anemia for years due to celiac disease.  You can have more than one type of anemia!  

Do not let doctors compartmentalism you!  “Oh, she has Thalassemia, that is why her hemoglobin is low.”  

Get tested.  Although I was low in iron (ferritin test), I was never low in B-12.  

If your gut is damaged, it is hard to absorb anything.  So, if you are severely b-12 deficient, you might need shots to by-pass your gut until you heal.  If you remain on a strict gluten-free diet, you might never need to consume vitamins ever unless you eat an unhealthy diet full of sugar and junk food which is most Americans.....?

Take this to your doctor:

https://celiacdiseasecenter.columbia.edu/celiac-disease/follow-up/

https://celiac.org/about-celiac-disease/treatment-and-follow-up/

Fenrir Community Regular

@cyclinglady  is correct. The term "anemia" is just a general medical term meaning there something wrong with your red blood cells. It could be from a nutrient deficiency, could be genetic, could be from bleeding, cancer, or exposure to toxins. So if you don't know why you're anemic be sure the Dr. figures it out. 

Some celiacs are anemic from poor absorption of nutrients. 

rt-116 Explorer
12 hours ago, cyclinglady said:

Do not just take a vitamin because you are anemic.  Your doctor should be able to tell you which kind of anemia you have (there are many types).  For example, I was very anemic. My doctors knew that I had a genetic anemia called Thalassemia which there is nothing to be done except for blood transfusions when medically necessary.  It masked my iron-deficiency anemia for years due to celiac disease.  You can have more than one type of anemia!  

Do not let doctors compartmentalism you!  “Oh, she has Thalassemia, that is why her hemoglobin is low.”  

Get tested.  Although I was low in iron (ferritin test), I was never low in B-12.  

If your gut is damaged, it is hard to absorb anything.  So, if you are severely b-12 deficient, you might need shots to by-pass your gut until you heal.  If you remain on a strict gluten-free diet, you might never need to consume vitamins ever unless you eat an unhealthy diet full of sugar and junk food which is most Americans.....?

Take this to your doctor:

https://celiacdiseasecenter.columbia.edu/celiac-disease/follow-up/

https://celiac.org/about-celiac-disease/treatment-and-follow-up/

Thank you so much for your thoughts. Its been such an overwhelming couple of days and this has been very helpful! 

18 hours ago, Fenrir said:

I would wait and see what you're deficient in. Many Celiacs are deficient in Vitamin D and B12 but each person is different. 

Thanks! 

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    • knitty kitty
      You're right, doctors usually only test Vitamin D and B12.  Both are really important, but they're not good indicators of deficiencies in the other B vitamins.  Our bodies are able to store Vitamin B12 and Vitamin D in the liver for up to a year or longer.  The other B vitamins can only be stored for much shorter periods of time.  Pyridoxine B 6 can be stored for several months, but the others only a month or two at the longest.  Thiamine stores can be depleted in as little as three days.  There's no correlation between B12 levels and the other B vitamins' levels.  Blood tests can't measure the amount of vitamins stored inside cells where they are used.  There's disagreement as to what optimal vitamin levels are.  The Recommended Daily Allowance is based on the minimum daily amount needed to prevent disease set back in the forties when people ate a totally different diet and gruesome experiments were done on people.  Folate  requirements had to be updated in the nineties after spina bifida increased and synthetic folic acid was mandated to be added to grain products.  Vitamin D requirements have been updated only in the past few years.   Doctors aren't required to take as many hours of nutritional education as in the past.  They're educated in learning institutions funded by pharmaceutical corporations.  Natural substances like vitamins can't be patented, so there's more money to be made prescribing pharmaceuticals than vitamins.   Also, look into the Autoimmune Protocol Diet, developed by Dr. Sarah Ballantyne, a Celiac herself.  Her book The Paleo Approach has been most helpful to me.  You're very welcome.  I'm glad I can help you around some stumbling blocks while on this journey.    Keep me posted on your progress!  Best wishes! P.S.  interesting reading: Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/
    • NanceK
      So interesting that you stated you had sub clinical vitamin deficiencies. When I was first diagnosed with celiac disease (silent), the vitamin levels my doctor did test for were mostly within normal range (lower end) with the exception of vitamin D. I believe he tested D, B12, magnesium, and iron.  I wondered how it was possible that I had celiac disease without being deficient in everything!  I’m wondering now if I have subclinical vitamin deficiencies as well, because even though I remain gluten free, I struggle with insomnia, low energy, body aches, etc.  It’s truly frustrating when you stay true to the gluten-free diet, yet feel fatigued most days. I’ll definitely try the B-complex, and the Benfotiamine again, and will keep you posted. Thanks once again!
    • knitty kitty
      Segments of the protein Casein are the same as segments of the protein strands of gluten, the 33-mer segment.   The cow's body builds that Casein protein.  It doesn't come from wheat.   Casein can trigger the same reaction as being exposed to gluten in some people.   This is not a dairy allergy (IGE mediated response).  It is not lactose intolerance.  
    • trents
      Wheatwacked, what exactly did you intend when you stated that wheat is incorporated into the milk of cows fed wheat? Obviously, the gluten would be broken down by digestion and is too large a molecule anyway to cross the intestinal membrane and get into the bloodstream of the cow. What is it from the wheat that you are saying becomes incorporated into the milk protein?
    • Scott Adams
      Wheat in cow feed would not equal gluten in the milk, @Wheatwacked, please back up extraordinary claims like this with some scientific backing, as I've never heard that cow's milk could contain gluten due to what the cow eats.
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