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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Did Your Vitamin D Levels Go Up?
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38 posts in this topic

Hmmm... sunscreen blocks out the rays that provide vit D. I'm fair so I'm going to use sunscreen and take a D supplement. I've had family with minor skin cancer, but it was easy to remove and not serious. Still I have to be careful. Does anyone else ever feel like they weren't made to survive on this planet?

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you only need 10/15 minutes per day of sun for Vitamin D.  you DO NOT want to develop a tan!  If you tan, you need more sun, rinse and repeat.

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what side effects??  unless you have a problem with the oily kind?  that may be gall bladder.

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I got a new reading for my vitamin D.  Just to remember previous readings were 30(Minnesota Mn after diagnosis and some supplements, 33 (last June while gardening) and current (June) is 48!  That really jumped compared to the last time!

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Yes, for unknown reasons pre-diagnosis my Vit D levels were a bit high at 79 (I did not take any supplements and was not eating dairy so we chalked it up to being outside a lot and being very fair) now I'm nearly 90 and they've asked me to cut back on my new multivitamin, even though I'm low on other things, to prevent it from getting dangerous.

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Does anyone have reliable info about what the recommended D level is? I've heard wildly different things from different doctors. My daughter and I were both tested in early summer last year, at the same lab. We both spend lots of time outside. Her level was 29, and her doctor said he wants to see it much higher, to 50 at least. My level was 30, and my doctor said that's more than enough and that there's no need to try to raise it through supplements or ever retest it to see if it goes up. Again, our blood was drawn at the same lab in the same week, presumably using the same testing methods. I have trouble believing that a 1-point difference between us shows that hers is much too low and mine is more than high enough. Or are there really drastically different levels of D that are considered adequate for children and adults?

I took supplements anyway, based on info from my daughter's doctor who seemed more informed - but I'm really just wondering if there's any actual medical consensus on adequate levels, or whether it just depends on each particular doctor's opinion.

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I'd say you both are at minimal acceptable. Do you have previous tests to compare if either of your levels have risen?

As example...mine was 17 at celiac diagnosis....rose to 28 with supplementation first year gluten-free...has continued to rise without supplementation each subsequent year since.

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I'd say you both are at minimal acceptable. Do you have previous tests to compare if either of your levels have risen?

Thanks for the info, Lisa. My daughter has no other tests to compare to, but after that she started taking an adult dose of chewable Caltrate every day (which has 800IU of D3) on the recommendation of the dietitian at her GI's office, mainly for the calcium. My level was retested by a different doctor about six months after the first test and had risen significantly, though I forget the exact number now and the lab had a different reference range. I'd been supplementing with 4000IU per day in between and was feeling much better, so I stopped taking it regularly. I was never really clear on what level to aim for.

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I have some information about vitamin D levels.  It seems that there were some very high levels of vitamin D being recommended. Then the Institute of Medicine of the National Academies were asked to study the matter by the US and Candian governements.  They came up with lower recommendations.  Many labs and doctors are still using the very high levels.  Also, different units are used in different countries, which further complicates matters.  You can read about it here: http://www.iom.edu/Reports/2010/Dietary-Reference-Intakes-for-calcium-and-vitamin-D.aspx

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My Vit D went from the low end of insufficient (on supplements for years) to the high end of sufficient (without any supplements at all) after just 6 months gluten free. My antibodies were all down to almost nothing as well.

 

I was so happy that I wanted to frame that lab report!  :D

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medscape.com/viewarticle718671 

 

you can try this, copy and paste wouldn't work....

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My doctor was appalled that I was at 20 and said she wants me to be near 80! That sounds pretty high to me. I'm not sure what to make of it.

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    • Ironictruth, I think that is a very insightful thought. since different antibodies present for different body systems all the ways gluten affects the body is still not well understood. Here is a case of presumably someone who had the gut damage of a celiac but also had neurological damage. http://www.nature.com/nrneurol/journal/v3/n10/full/ncpneuro0631.html entitled "A case of celiac disease mimicking amyotrophic lateral sclerosis" so it has happened in the literal but since this is not well understood people don't make the connection today. I would also point you to this hindawi article on the "Lesson's learned from Pellagra" but I am afraid we haven' learn't yet. https://www.hindawi.com/journals/cggr/2012/302875/ notice specially the 2.1 section clinical feature of pellagra and all the neurological symptom's once associated with a Pellagra patient. quoting "The neurological manifestation did not stop there because other degenerative conditions, such as an amyotrophic lateral sclerosis-like picture, were described, with fasciculation of the tongue and upper and lower motor neuron signs. Cerebellar syndromes occurred and vertigo was frequent. Headaches, sensory and pain syndromes, epilepsy, and involuntary movements were noted as well as sleep disturbances. Cord lesions were also seen, as was optic atrophy, so there were multiple sclerosis (MS), like variants." which tells me doctor's don't recognize pellagra today when they see it because they haven't seen it in 75+ years. ***this is not medical advice but read the hindawi journal on lesson's learned and I think you will see yourself in their many descriptions of all the way Pellagra presents itself to doctor's and patients still suffering today and you can see why it (like celiac) is hard to pin down today because it presents in so many ways it can be soo overwhelming and since vitamins are not a focus anymore today (especially b-vitamins) that today I believe we are doomed to repeat history's lessons unless the current generation learns again all the ways pellagra presents itself today. good luck on your continued journey. posterboy by the grace of God,  
    • after going gluten-free I felt great! but lately I have been feeling bad. the gluten symptoms are still gone, but now I am weak, foggy,  any ideas? doc did a full blood work up, all came back normal
    • Estes, I want to respond to your question might it be Pellagra instead? It might be but it will be hard to prove by testing. See my response to this question from an earlier thread. The in International Journal of Celiac disease noticed this connection in 58% of Celiac's. Here is the link http://pubs.sciepub.com/ijcd/3/1/6/ quoting  (My words Pellagra is) "Considered now as a vitamin deficiency state, pellagra has been linked to a chronic lack of niacin (vitamin B3 or nicotinic acid), an important constituent of coenzyme I and coenzyme II. Its clinical map is believed to include the classic 3 Ds: Dermatitis, Dementia and Diarrhea. The order of appearance and severity of these three sub-syndromes varies and some may not show at all."  and their note  that "Unfortunately, the patient was not diagnosed biochemically as pellagra and died before gluten free diet was initiated." and also notice this research as first pointed out by Knitty Kitty https://www.ncbi.nlm.nih.gov/pubmed/2084620 People who had pellagra and esophagitis showed improvemnt in their condition in only a week of supplementation. But they stopped too soon. The ajcn link quoted in an earlier response noted clinical remission after 3 weeks of 3/day supplementation with Niacinamide plus a B-complex and a high quality niacin containing food regimen for 3 more months to ensure complete remission. Here is the link again. http://ajcn.nutrition.org/content/85/1/218.full the problem most people have today most people wont take a vitamin that long (3 months) or that frequent (2 to 3 daily) to completely recover. but we know even if you take a  b-complex with as little as 100mg Niacinamide 3/day for a month many of our GI problems will improve because it is the clinical response to the vitamin that confirms the diagnosis. I think of a 3 month cycle as more cautious to avoid someone relapsing back into sub-clinical pellagra but if that is too aggressive in your mind then take it (Niacinamide) for only a month 2 to 3/daily to see if it doesn't help is worth a try  I think. My experience with B-vitamins tells me 3 months is ideal because that repletes our storage sites in the liver.  You should probably take this/is (Niacinamide) with a B-complex so as too keep your other B vitamins in balance as well. ****** this is not medical advice but I hope it helps you the way it did me. good luck on your continued journey. 2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included. posterboy by the grace of God,  
    • If she is overly depressed about it let her know there is a gluten-free version of just about every food out there and it is more like changing brands. I have a list of it, for now she needs to focus on simple whole foods and healing in a few months she can try a few of the gluten-free versions of her old foods. BTW might try making her some simple food foods for now. 1-3 ingredients like veggies/fruit and almond butter (new jar no crumbs) for a good snack platter almonds are high in protein and good fats to help her out with calorie intake. You can even make a reeses knock off by mixing warm nut butter with equal amounts powdered sugar or sugar free version like Swerve confectioners sugar use it for a dip/spread or use it in baking >.> I made a giant 9" almond butter cup once. Anyway here is that link you can look at all the options healthy and not so healthy all the different brands and see the world is full of gluten free options for just about everything. https://www.celiac.com/gluten-free/topic/117090-gluten-free-food-alternatives-list/  
    • Thank you for the good advice! My husband told me last night that this is surely her way of grieving. I need to give her time.  I so appreciate your help. 
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