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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.

Vitamin And Mineral Deficiencies
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15 posts in this topic

Well I went and had my levels checked on some common vitamins. (Internal Medicine Dr ordered these)

Vitamin D - severely low (muscle/bone pain, weight gain, fatigue etc) 50000 IU per wk over 8wks

Iron (all levels) - severely low (fatigue, pain, weakness, near fainting etc) will get iron inffusions IV

Vitamin C - severely low (rare) (heart problems, stroke (severe headaches), eye problems, weakness, scurvy (diagnosed) etc etc etc. ) going to Mayo clinic as it cannot be treated where I live.

Calcium - Okay

Vitamin B12 - okay

Phosphorous - okay

Folate - okay

Thamin - still waiting for results

Despite the gluten free diet malabsorption seems to be the ongoing problem. My Dr here does not know how to treat such deficiencies so back to Mayo I go. I can't believe I have diagnosed with Scurvy!! This does however explain the heart and head problems. Hopefully this time the proper treatments will be done. I never knew this disease could cause these kind of problems. She said that because I went undiagnosed for so long that my intestines can't get the nutrients from any of the food I am eating even though I live on veggies, fruit, and lean meats. We as celiacs probably eat better than most people we know and we are the ones who have deficiencies. Go figure. I don't even know what to expect anymore but will not leave Mayo without all the answers. I am tired of being nice. I had no idea and after months of losing my life to these symptoms I want answers. Dr said it wouldn't have mattered if I had taken tons of vitamins a day they wouldn't have done a thing. (due to the disease) On top of all of this my pancreas and gallbladder are starting to shut down.

Anyway, I hope this might help some of you out there who are still struggling with "unresolved Celiac despite Gluten free diet"

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I can sympathize with you. I've been gluten-free for more than two years and have generally been feeling a lot better than I have in years, except for occassional minor DH symptoms. I just went for a check-up and found that now I have a severe vitamin K malabsorption issue (I was previously diagnosed with osterperosis, but it looks like my calcium absorption is normal now). Everything else is fine. The Iga and Igt tests came back negative. Now the GI is trying to figure out why I'm having this problem.

It is frustrating!

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Yikes, scurvy! I imagine you'll need to get vitamin C intravenously as well, until your intestines are healed enough to absorb nutrients again.

Try taking cod liver oil (I take the Carlson brand, which doesn't taste bad) for vitamin D and A and omega 3 fatty acids. My vitamin D was very low 1 1/2 years ago, too, and I had to cut back on it, because my vitamin D was getting too high (which can cause problems, too).

Regular vitamins are obviously useless right now (I couldn't take any for six months after starting the gluten-free diet, they would make me sick). But would liquid vitamins work?

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Ok question, If I start taking vitamins will those affect the levels or will they stay the same. I am questioning this because I am going June 11 to my Ortho doc for my fx foot that is slow to heal my 3x to brake the same foot and I am getting a bone density test to see if I may have any early signs of ostero anything. I do have joint or bone pain quite often. So I was just wondering if taking vitamins will affect the scan or any blood work when I go for a physical at my primary doc, which he will order blood work and all.

Donna

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All of this is happening despite having healed intentines. My last biopsy came back okay according to the GI dr. I am already taking a vita D supplement although now it is prescription and at very high doses. Taking vitamins will affect the results because if you need them you need them. I was taking all the necessary vitamins and am still showing up with severly low levels. If you take the vitamins you need and start feeling better than I wouldn't wait for bloodwork results unless your dr asks you to. What I don't understand is how can I be eating healthier than I ever have in my life and end up with worsening health??? Hopefully they can explain why my body is not absorping the nutrients I am eating. I am lucky that I don't have problems with any other food except gluten so I can still eat corn, soy, dairy, meats etc. I have a pretty well balanced diet. (In my opinion). My friends say they would die if they had to eat so healthy. None of it makes any sense to me. I have spent enough money in the last few years to have completly paid for my house. It is so frustrating. I still wonder also if I have celiac since my IGA was negative. The only positive was IGG (barely). I don't know...there are so many questions. I wonder if the medical profession even knows what they are dealing with or if we have become human test subjects. My biggest fear is not being here to watch my kids grow up so I keep plugging along looking for answers. Anyway I will keep all posted and thanks for the replies.

Jodi

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Jodi, are you sure you aren't intolerant to dairy and soy? If your villi are healed, it is a mystery to me why you aren't absorbing nutrients. I hope you get some answers soon.

The reason I mentioned cod liver oil is, that it is easily absorbed and might work better than the vitamin D supplements.

It just occurred to me that vitamin C is a fat soluble vitamin. Are you eating enough fat? You are supposed to take vitamin C along with eating something containing fat. So, taking cod liver oil at the same time as your vitamin C might work for bringing both your D and C up.

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I think I eat enough fat? I am having problems with gallbladder and pancreas and have noticed bms are very different than when I get glutened. Like I said I eat alot of veggies and lean meats so maybe I am not eating enough. Though the fact I haven't lost anymore weight is frustrating. Also like I said I have been taking daily vitamins all along so was shocked to see the levels. the anemia I can understand since I have been low on iron most of my life and now with menopause it makes the matter more of a problem. Will have to wait and see what the next round of appts with dr does for me. At least before I went gluten free all I ever had to deal with was D. Now it seems to be ballooning into a systemic thing.

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I think I eat enough fat? I am having problems with gallbladder and pancreas and have noticed bms are very different than when I get glutened. Like I said I eat alot of veggies and lean meats so maybe I am not eating enough. Though the fact I haven't lost anymore weight is frustrating. Also like I said I have been taking daily vitamins all along so was shocked to see the levels. the anemia I can understand since I have been low on iron most of my life and now with menopause it makes the matter more of a problem. Will have to wait and see what the next round of appts with dr does for me. At least before I went gluten free all I ever had to deal with was D. Now it seems to be ballooning into a systemic thing.

Jodi, it isn't fat that makes you fat, but too many carbs and sugars. In fact, eating enough healthy fats will help you lose weight! Try using non-hydrogenated, cold pressed coconut oil. It is a healthy saturated fat, that is known to cause weight to regulate to normal (fat people lose, skinny people gain weight). The same goes for cod liver oil.

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Actually, vitamin C is water soluble along with B vitamins. Vitamins A,D,E and K are the fat soluble vitamins.

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Have you looked into liver dysfunction? Try googling it. Apparently if your liver is not functioning properly, you will have problems absorbing vitamins and nutrients - especially the fat soluble ones. Lots of people with gluten intolerance have dysfunctional livers. Unfortunately, routine liver tests won't always show that there is a problem.

Hope this helps,

Marlene

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I'm bumping up this thread to see if anyone can add any further insights.

After 11 months gluten-free, my vitamins, minerals and amino acids are quite low (not all but many of them), although my fat malabsorption test is now normal (Enterolab). I am taking tons of supplements but am worried that I won't absorb those either.

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Just a couple of thoughts -

I would think liquid vitamins would absorb more readily if for no other reason than they have the "head start" so to speak of already being liquid.

Also, I may be confused about Vitamin D. I thought the body made its own when exposed to sunlight. I realize that in the winter in places like Minnesota, NE China and Canada where the winter days are short and exposing your skin to sunlight could get you a good case of frostbite, that might not work too well, but overall in general in the rest of the world and/or during warmer months, should there not ever be a problem with Vitamin D???

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Vitamin D deficiencies are extremely common. The only dietary source is milk (not cheese or other dairy -- just milk ) to which vitamin d is added -- it doesn't occur there naturally. And in N. Europe and the northern US (eg, Chicago, Boston, NY and any where north of them), it is impossible to get enough sunlight during the winter (September - May) to make any Vitamin D, because of the angle of the sun's rays. Most everyone in those parts of the world should be taking a vitamin d supplement.

Search vitamin d deficiency and I think you'll be surprised at what you find.

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I agree with Marlene, liver dysfunction is often a big problem especially for those of us who are overweight - that in itself can be an indicator of a sluggish liver, and I am pretty sure that has been my problem for years as my hair has gone from being lovely and thick and wavy to very thin and lifeless (and grey!).

Back last year my hair was falling out something dreadful. I was having stomach problems after my doctor changed my diabetic medication and I now think that triggered either Celiac or at the very least, extreme gluten intolerance. I knew that hair loss can be linked to liver function (we had a friend who had a liver fluke and all his hair fell out!), so I took some Milk Thistle capsules for a few weeks, as they are a good liver tonic, plus some good multivits.

Within a few weeks my hair had stopped falling out. I also believe that the Milk Thistle cleared out my gall-bladder as I noticed something in the loo one day that looked like peas, but I hadn't eaten any! I flushed it and thought no more about it, but when the stomach got so bad and an Ultrasound was done, it was empty! Not one gall-stone! Considering I am 51, I reckon that's quite a rare thing!

Then, about 2 weeks after I started gluten-free, I suddenly felt my liver clear out. It was a bit disconcerting to feel stiff trickling down the tubes inside and it was pretty sore for a couple of days but soon recovered. I probably dumped a load more stones, grit and rubbish!

Now after 2 months gluten-free, dairy free and very low carb and sugar, my hair is still good, I seem to be absorbing pretty well - I do take a multivit everyday and one Milk Thistle to keep the support up. My energy is coming back, I am sleeping better generally and can now tolerate a few foods that my stomach couldn't cope with a few weeks ago. I was getting a dreadful backache nearly every time I ate anything but that has improved a lot now too.

The weight isn't moving yet, but I am pretty confident it will, once my body has sorted itself out.

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All of this is happening despite having healed intentines. My last biopsy came back okay according to the GI dr. I am already taking a vita D supplement although now it is prescription and at very high doses. Taking vitamins will affect the results because if you need them you need them. I was taking all the necessary vitamins and am still showing up with severly low levels. If you take the vitamins you need and start feeling better than I wouldn't wait for bloodwork results unless your dr asks you to. What I don't understand is how can I be eating healthier than I ever have in my life and end up with worsening health??? Hopefully they can explain why my body is not absorping the nutrients I am eating. I am lucky that I don't have problems with any other food except gluten so I can still eat corn, soy, dairy, meats etc. I have a pretty well balanced diet. (In my opinion). My friends say they would die if they had to eat so healthy. None of it makes any sense to me. I have spent enough money in the last few years to have completly paid for my house. It is so frustrating. I still wonder also if I have celiac since my IGA was negative. The only positive was IGG (barely). I don't know...there are so many questions. I wonder if the medical profession even knows what they are dealing with or if we have become human test subjects. My biggest fear is not being here to watch my kids grow up so I keep plugging along looking for answers. Anyway I will keep all posted and thanks for the replies.

Jodi

Don't expect Mayo to give you answers LOL. My mom spent a week there with diarrhea that caused her to go to 86 pounds, they told her she had ulcerative colitis and told her to take pepto bismol. two years later she died of adenocarcinoma of unknown origin (my guess is small intestine). She was never diagnosed celiac...but I got it from somehwere (DQ2 gene), and it's not my dad...so, ya think Mayo coulda run a dang gliadin test????????????? sorry but they're all f---in idiots. (and i'm a Christian and don't like to swear but I can' t help it right now!, sorry) I truly hope you will have a better experience, but the bottom line is you have to do your own research and dont' rely on the "experts" to solve your health problems, because they've been trained under a model that just doen'st work for true healing (crisis management of symptoms rather than HEALTH care).

Have you had a test of intestinal permeability? Usually only holistic docs are likely to do it I think...it tests for leaky gut syndrome. I am only guessing, but it's possible for the GI doc to biopsy and say the microvilli are healed...but miss the fact that the junctures are not tight...meaning there can be tiny holes in your intestine allowing undigested food/proteins/etc. to get out and into your blood stream and cause malabsorption....also low stomach acid can cause problems so i'd ask for a test of that as well.

bonne chance,

Liz

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    • How do you know what's causing what?
      I am in same boat, yesterday my stomach was churning and bloated and I don't know what the cause was.  How about keeping a food diary? Just note what you ate and how you feel. A few days may be sufficient to discern a pattern, either some rogue product or a previously unknown intolerance. I have read that after gluten is removed further intolerances which were hidden can become apparent.  I don't know whether you could cut yourself some slack from a full vegan approach whilst your body heals? If not, maybe you could substitute say milk with coconut milk or similar to give your body a break whilst keeping calcium levels high? If you join coeliac uk you can check your sauces etc on their gluten-free database, they'll also send you a book which became my bible until I got a hang of which brands I could eat safely. Finally, have you excluded cross contamination from pots and pans, toasters, shared condiments etc?  Good luck!
    • Blood results - odd
      My results were similar – Low ferritin but normal B12. Although my ferritin levels were low, my Iron serum levels were normal. So might be worth getting your iron levels checked out to see if you have any deficiency in Iron. Also I was deficient in Vitamin D, which is perhaps more of a problem in England rather than the US - Our milk isn’t supplemented with vit D and we obviously have less sunshine.
    • How do you know what's causing what?
      Hi Kam, If you are going to continue the celiac testing with an endoscopy, you need to keep eating gluten until it's done. It can be hard for vegetarians to keep their vitamin D levels up.   This Vitamin D  Council link has some good info on ways to boost your levels. https://www.vitamindcouncil.org/about-vitamin-d/
    • Blood results - odd
      Your ferritin was very low!  My result was a 2 when I was diagnosed.    I hard a hard time breathing and the fatigue was awful due to low hemoglobin levels.  But after going gluten free and taking iron for a few months, I quickly recovered from iron-deficiency anemia.  I still have hemologobin levels that are slightly below range due to Thalassemia which is genetic and my body has adjusted for it.   My B12 and folate levels are  super high.  My B12 is over 2000!  Yeah, I googled and ruled out cancers, etc.  Looks like some of us do not process man-made B12 often included in supplements.  I opted for natural sources of B-12 and folate and my levels have come down a bit.   Let us know your results.  Read the Newbie 101 section under "Coping" within this forum for tips.   Be patient.  It can take months, to years to feel good.  But it will happen!    
    • How do you know what's causing what?
      Welcome to the forum!   Well.....in theory you should be able to heal within a few months (grow new villi, etc.).  The reality is that it takes so much longer -- like a year or two (I kid you not!)  Why?  celiac disease can damage more than just the gut.  Depending on what was damaged (nerves, bones, etc) can impact healing time.  The gluten-free diet has a very steep learning curve.  It's not just giving up gluten.  It's avoiding cross contamination.  Becoming an expert in reading labels.  Learning to avoid foods processed on shared lines in a facility.  Then there are intolerances that most celiacs develop.  The most common ones is lactose.  Why?  The villi tips release the enzymes to digest lactose.  No villi tips?  Then you can not digest lactose.  Often this is temporary, but if you are one of the many adults in this world, you might already be lactose intolerant or might become so as you age.   Other intolerances that members often report include corn or soy.   Some celiacs react to oats, even gluten free.  So avoid oats for six months.  So, try cutting out dairy for a few days and see how you feel.  Then add in those items that have the least lactose:  hard cheese, butter, yogurt and see how you feel.   Avoid eating out for six months until you have seen some improvement.   Read our Newbie 101 thread under coping for more ideas!  Hope you feel better soon.   
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