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      READ FIRST: Super Sensitive Celiacs Disclaimer   09/23/2015

      This section of the forum is devoted to those who have responses to gluten beyond the experience of the majority of celiacs. It should not be construed as representative of the symptoms you are likely to encounter or precautions you need to take. Only those with extreme reactions need go to the lengths discussed here. Many people with newly diagnosed celiac disease have a condition known as leaky gut syndrome, which can lead to the development of sensitivity to other foods until the gut is healed - which may take as long as one to three years. At that time they are often able to reincorporate into their diet foods to which they have formerly been sensitive. Leaky gut syndrome leads many people to believe they are being exposed to gluten when they are in fact reacting to other foods.
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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.

Sharing - What Supplements/vitamins Work For You?
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8 posts in this topic

I think one of the really challenging things to find, as a super-sensitive, is supplements that don't make you sick. Probiotics, vitamins and minerals, digestive enzymes - all the things that can be really helpful, but we have to find safe sources.

So, what brands of supplements/probiotics/other 'gut/body helpers' do you take that don't make you react?

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I use homemade yogurt. I found a whole milk source with nothing added. In addition the cows are pasture fed and not supplemented with gluten grains or oats. I use their yogurt for first culture, but make my own from my own four more times. How much more can that be stretched? The sources I read said three, but I've taken it to four so far. Maybe I'll try 5.

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I think one of the really challenging things to find, as a super-sensitive, is supplements that don't make you sick. Probiotics, vitamins and minerals, digestive enzymes - all the things that can be really helpful, but we have to find safe sources.

So, what brands of supplements/probiotics/other 'gut/body helpers' do you take that don't make you react?

Hi Shauna,

This is a really good question. I wish I had some answers for you. So far I have reacted to many muti vitamins. I think I tried about seven different companies and I still haven't found one that I can take. After the last time I'm really afraid to take any and I've completely given up on them.

Back in Jan of this year I was so sick from vitamins and it took me four months to realize it. The doctor thought I had lymphoma and I had to go through a laparoscopy surgery to remove enlarged lymph nodes in my stomach. And all because of "gluten free" vitamins... <_< Even the doctors didn't think it was because of the celiac disease. All the path reports came back negative for cancer , but a reactive lymph node was the diagnosis. Which means it could be from an autoimmune disease. Duh -celiac disease! It wasn't until two weeks after the surgery I started to make the connection to the vitamins. And I had to go through even more testing for other autoimmune disease -everything came back negative, Thank God! I stopped taking the vitamins and wouldn't you know all my symptoms went away and I starting feeling really great again. I even thought about suing the company, but the lawyers thought in the long run it wouldn't be worth it. So I actually had to have surgery because of vitamins. :angry:

Right now I take:

Slow Fe iron -red pills

Nature Made Calcium with vitamins D (but not everyday)

I haven't tried anything new since last May so I thought I'd try another multi vitamin two weeks ago. I tried the Nature Made multi vitamin (gluten free) and the next day I felt I got glutened pretty bad so I had to stop them right away. I always have reactions the next day after I get glutened and I made sure I didn't try anything else so I know it was the vitamins.

After two years, I've just come to the conclusion that I'm just too sensitive to take any muti vitamins and I just try to eat really healthy. I'm thinking that there are just too many ingredients in the multivitamins that it makes it hard for them to be uncontaminated by gluten.

If there are any muti vitamins that the super senistive people take without any problems I'd love to know, too.

Thanks Shauna for posting this. You must have been reading my mind... :)

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I had the same problems with vitamins. There are so many vitamins and supplements recommended here, it makes me nervous, but I haven't tried all of them to know that I react, but just about everything I tried, I did react to. They aren't well regulated and I think that it is difficult to get things really gluten-free when there a lot of ingredients, especially processed ones, as stated above.

I do manage two:

Thyadine iodine supplement and Life Extension Vitamin D3 2,000 I.U. liquid emulsion. I diluted it with my safe olive oil.

I found that I reacted to the Nature Made Vitamin D. I am sensitive to crazy low levels of cc.

I have tried to get vitamins as concentrated as possible with as few ingredients as possible. The few ingredients limit the chances of cc. The concentrated form means that we take less so that the cc is less likely to bother us.

It is crazy when you feel better when you stop taking your vitamins. Vitamins are supposed to make you feel better, right?

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My spouse felt loads better when he stopped the vitamins. I bought them carefully, they were high quality and free of gluten, casein and soy.

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Jeeesh, that's so awful, for vitamins to cause this much trouble! I haven't been able to find any multi-vitamins or calcium supplements that don't make me sick, either, although some I had an allergic reaction to early on, so I never got to try it when I was having my super-sensitive reactions. I have one iodine source, but I just don't know if I trust it - not for gluten reasons, but for whether or not it's actually iodine that I can absorb. The company seems a bit odd, to be honest. If I find out it's good, I'll put the name out here!

One thing I've been investigating - although it's not perfect by a long shot - is herbs. A number of herbs seem to be fairly high in certain vitamins, so I've been trying to grow as many herbs as my backyard can support. Finding accurate information on estimated herbal vitamin levels has been difficult, though. The most detailed information on this I've found here: nutrition-and-you.com.

The site lists some of the nutritional information from the USDA, some cooking uses, other information. Although I'm still researching which vitamins can survive heat and which can't, that sort of thing.

I started this a little bit ago, and then as usually happens, the rest of life barged in and it's kind of fallen by the wayside, even though I really need to keep it going!

I have no idea how much this has helped or not, but I have found it interesting that eating plainly as I do now, with salt and my own herbs for the only alternate flavor, I'll find myself craving one or two of the herbs for a few days in a row, then a totally different set for the following days. Not even necessarily herbs that I like the flavor of, even, but I crave them just the same. Makes me wonder if those herbs are high in vitamins that I'm need at that point, you know?

Considering that this has been my only vitamin source (aside from the iodine I try) for over a year now, and my vitamin levels checked out well at the last doctor check, I figure at least they aren't hurting! :)

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I had always been iron deficient and took iron supplements. After going gluten free my iron levels were high so I stopped the supplements.

I think that avoiding gluten may be more important than taking supplements when it comes to getting our vitamin levels where they should be.

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We've been trying to eat oysters and liver regularly

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      Hi Richie I've put the above in quotes as you have described in the first and second sentence how I felt six months prior to my DX.   In my own case, in the end I concluded it was anxiety after consulting Dr Google!  It was such an alien feeling to me, I couldn't even think what it was, particularly as life was pretty good at the time.  Anxiety is a problem for a lot of celiacs prior to diagnosis, and often after glutening after going gluten-free. You mention breathlessness, this of course can be for reasons such as anaemia (again a common celiac problem, I had this prior to DX) but of course also can arise if you are anxious.   Re 'gluten free' - Flowerqueen is right, from what I have read on this forum some people really do seem to react with less than 20ppm.    But perhaps some other things to consider...  could there be something wrong with the batch you have consumed?  Might it be worth contacting the manufacturers?   That said, you could , as Flowerqueen suggests, have a problem with another ingredient, in the product or something else you consumed. In the past I have had a terrible reaction - fever, trembling, diarrhea, stomach cramps that lasted up to three hours the last three times I ate..... broccoli, of all things.    Who would have thought that possible?  I have often thought I should try it again, just to be sure it was the broccoli, as it is a 'super food' that I ought to have in my diet, that I like very much, but the thought of having such a reaction again has put me off. I do hope you will find some answers soon.  
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