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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.

Celiac, Fibromyalgia & Very Limited Food Tolerance
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Does anyone else keep getting more and more sensitive to foods as time goes on? I am to the point where I can't tolerate fruits and only a couple veggies. Been gluten-free for 5 years now. I am trying pro-biotics (ultimate flora), but am now feeling awful....I don't know if it is the pro-biiotics, or the calcium I am taking. I have learned so much by reading the topics here, it is SO nice to feel validated and learn from others :)

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Hi Cindy,

I don't have fibromyalgia, but I have a kissing cousin, discoid lupus.

When it seemed like I was reacting to everything I ate, root veggies were good for me. I sought out veggies I'd never eaten before like Rutabegas and turnips. Radishes, even though they wouldn't traditionally be considered mild on the stomach, were fine. All squash were fine. (I love butternut and carnival hard squash, zuccinni or yellow summer squash on their own or in soups.)

Rutabegas are pretty mild. You can just boil them (after peeling and chopping). You can make a decent soup out of them too.

I've read that mushrooms are good for people with autoimmune diseases. If you have an oriental store near you, dried shitake mushrooms are inexpensive there, and you can make a good soup with reconstituted mushrooms and root vegetables. Or fresh sliced sauted mushrooms are nice (when they're on sale). You can score good rice there too, like the forbidden rice, AKA black rice or emperor's rice that's popular now.

I could handle canned coconut milk and oil when all the other milks and oils seemed to produce adverse reactions.

Can you tolerate seafood? (It's great cooked with the coconut milk.) I had to give up coffee for awhile because it was to rough on my stomach, but I enjoy a couple of cups in the morning now.

I also found that making homemade broth isn't that hard and is nutritious because you get the bone marrow.

I like cabbage in soups and in homemade slaw with a apple cider vinegrette dressing.

I really worked at trying to find an answer the first year. I tried rotating my diet (not repeating foods in the same food families for at least 3 days) and that seemed to help, but exhausted me just planning, and then I never felt like eating what I'd planned.

So, long story short, try experimenting with new foods or long forgotten foods and mix things up a bit.

Hope you feel better soon. :)

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Hi Cindy,

I don't have fibromyalgia, but I have a kissing cousin, discoid lupus.

When it seemed like I was reacting to everything I ate, root veggies were good for me. I sought out veggies I'd never eaten before like Rutabegas and turnips. Radishes, even though they wouldn't traditionally be considered mild on the stomach, were fine. All squash were fine. (I love butternut and carnival hard squash, zuccinni or yellow summer squash on their own or in soups.)

Rutabegas are pretty mild. You can just boil them (after peeling and chopping). You can make a decent soup out of them too.

I've read that mushrooms are good for people with autoimmune diseases. If you have an oriental store near you, dried shitake mushrooms are inexpensive there, and you can make a good soup with reconstituted mushrooms and root vegetables. Or fresh sliced sauted mushrooms are nice (when they're on sale). You can score good rice there too, like the forbidden rice, AKA black rice or emperor's rice that's popular now.

I could handle canned coconut milk and oil when all the other milks and oils seemed to produce adverse reactions.

Can you tolerate seafood? (It's great cooked with the coconut milk.) I had to give up coffee for awhile because it was to rough on my stomach, but I enjoy a couple of cups in the morning now.

I also found that making homemade broth isn't that hard and is nutritious because you get the bone marrow.

I like cabbage in soups and in homemade slaw with a apple cider vinegrette dressing.

I really worked at trying to find an answer the first year. I tried rotating my diet (not repeating foods in the same food families for at least 3 days) and that seemed to help, but exhausted me just planning, and then I never felt like eating what I'd planned.

So, long story short, try experimenting with new foods or long forgotten foods and mix things up a bit.

Hope you feel better soon. :)

Thank you for the info on root veggies - I will keep working on it!

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Yes, yes, and yes. I'm sorry I didn't see this earlier.

I have gotten much more sensitive as time goes on. I don't believe it. I'm trying to get better in the garden so that I can grow more of my own. I haven't reacted to my garden veggies. I do better with the farmer's market than the grocery store. It seems like once things get into the mainstream food system there is trouble.

I do careful challenge/elimination/challenge studies on everything.

This time of year is terrible. I need to grow and freeze more next year.

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I have fibromyalgia too. Mine is a direct result from celiac. If I get zapped by gluten, soy, dairy or corn, fibro comes on very strong. Type fibromyalgia into the search on the site, there are several threads on it. It is common with celiac.

Yes, I have become more and more sensitive to foods as time goes on. First it was just gluten then dairy then corn etc. I think it's pretty common.

Hang in there!

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Yes, yes, and yes. I'm sorry I didn't see this earlier.

I have gotten much more sensitive as time goes on. I don't believe it. I'm trying to get better in the garden so that I can grow more of my own. I haven't reacted to my garden veggies. I do better with the farmer's market than the grocery store. It seems like once things get into the mainstream food system there is trouble.

I do careful challenge/elimination/challenge studies on everything.

This time of year is terrible. I need to grow and freeze more next year.

I feel SO much better already knowing that there are many other people with the same problems with food! I wouldn't believe it if it weren't happening to me. I will try the farmer's market produce since I don't have a garden. I haven't been eating fresh grocery store produce because of the possible contamination. I also analyze and write everything down I eat. Gets complicated! When I try something new I wait about 4-5 days and then I know if it is a keeper or not, then on to the next challenge. I am hoping that pro-biotics will help me heal. My doctors think they are the answer, but I think they are making me sick - but then I start wondering if it is some ingredient that the capsule contains or is just that it may take time to adjust.

That is wonderful that you are able to grow and freeze your own produce!

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I have fibromyalgia too. Mine is a direct result from celiac. If I get zapped by gluten, soy, dairy or corn, fibro comes on very strong. Type fibromyalgia into the search on the site, there are several threads on it. It is common with celiac.

Yes, I have become more and more sensitive to foods as time goes on. First it was just gluten then dairy then corn etc. I think it's pretty common.

Hang in there!

Very interesting about the fibro/celiac connection. Same zap story for me with gluten, soy or dairy! I will go read the fibro threads, thanks!

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I am hoping that pro-biotics will help me heal. My doctors think they are the answer, but I think they are making me sick - but then I start wondering if it is some ingredient that the capsule contains or is just that it may take time to adjust.

Sad to say, I got better when I stopped all supplements. I added some back slowly and carefully, but I had a hard time finding ones that I could tolerate.

Good luck.

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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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