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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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    • does your diet have to be like a perfection?
      Yes.  You have to be 100% gluten abstinent when you have Celiac Disorder.  It gets easier to be gluten abstinent, not because you get used to it but because of the negative effects that ingesting gluten causes when you accidentally eat something with gluten.  Nothing tastes good enough to go through a glutening.  As your system heals it will become less tolerant of your occasional lapses into gluten consumption--accidental or otherwise. You have to take this seriously.  You get used to it and there are some wonderful gluten-free options out there.  But you can't go back to gluten and stay healthy.  It just doesn't work that way. Good luck.
    • does your diet have to be like a perfection?
      I  think you need to watch where you get your medical info!    Of course you can't introduce gluten back in. And  of course you have to be strictly gluten-free and not intentionally eat gluten.   "The gluten-free diet is a lifetime requirement. Eating any gluten, no matter how small an amount, can damage your intestine. This is true for anyone with the disease, including people who do not have noticeable symptoms. It can take weeks for antibody levels (indicating intestinal damage) to normalize after a person with celiac disease has consumed gluten. Depending on a person’s age at diagnosis, some problems, such as delayed growth and tooth discoloration, may not improve. The gluten-free diet requires a completely new approach to eating. You have to be extremely careful about what you buy for lunch at school or work, eat at cocktail parties, or grab from the refrigerator for a midnight snack. Eating out and traveling can be challenging as you learn to scrutinize menus for foods with gluten, question the waiter or chef about possible hidden sources of gluten, and search for safe options at airports or on the road. However, with practice, identifying potential sources of gluten becomes second nature and you’ll learn to recognize which foods are safe and which are off limits." http://www.cureceliacdisease.org/living-with-celiac/guide/treatment    
    • does your diet have to be like a perfection?
      FlowerQueen is correct.  Once diagnosed with celiac disease, you should never consume gluten again without the risk of becoming very ill (osteoporosis, liver damage, lymphoma, etc.).   I think everyone has trouble in the beginning sticking to a gluten free diet.  That's because gluten is in so many processed foods.  It takes time to learn to read labels, make a safe kitchen, learn to eat out, get your family to support you.  I would advise reading out Newbie 101 section under "Coping" within this forum.  It contains valuable tips for becoming gluten free.  Also, check out the University of Chicago's celiac website to learn about celiac disease.  Knowledge is power!   Everyone has different degrees of damage, but I would say that learning the diet and healing can take months to a year or longer.  The good news is that this is an autoimmune disorder that is treatable -- avoid gluten at all costs!   Take care and welcome to the forum!   
    • does your diet have to be like a perfection?
      Not sure what you mean by perfecting your diet? Do you mean accidentally eating gluten?   As to re-introducing gluten again, if you have celiac disease, please DO NOT ever re-introduce gluten again. It's an auto-immune disease, not a food intolerance. It will damage your gut again if you do.  Hope this helps.
    • 3 months gluten-free still feeling cramps
      First of all, your doctor does not seem to be celiac savvy.  It is so easy for a GI doctor to miss patches of intestinal damage on an endoscopy because the small intestinal wall, if spread out is the size of a tennis court!   How many samples were taken and submitted to a pathologist?  A visual look from the GI often results in nothing!  For example, my endoscopy visual was recorded as normal.  But my biopsies revealed moderate to severe intestinal villi damage (Marsh Stage IIIB).  GI's are supposed to take four to six tissue samples.  I would suggest getting copies of all your lab/procedure reports.  Don't trust me.  Here's the research: http://gi.org/guideline/diagnosis-and-management-of-celiac-disease/ http://www.cureceliacdisease.org/living-with-celiac/guide/diagnosis Next, three months of eating gluten free is not very long.  The reality is that there is a steep learning curve to going gluten free.  You can get "glutened" by kissing someone who just consumed gluten.  You can get it from a shared toaster, coated frying pan, wooden spoon, etc.  Gluten can be hidden in prescription medications, etc.  Do you EVER eat out?   I can tell you that it took me a year to feel pretty good and another to feel really normal!  My learning curve was not so steep since my hubby had been gluten-free for 12 years prior to my diagnosis, so I knew the drill.   You could have something else besides celiac disease.  Like SIBO, Crohn's, etc.  You might consider going back to your GI for another celiac antibodies test to see if you are diet compliant  before looking into other illnesses.   You could have developed intolerances (lactose is a huge one).  These can be identified by keeping a food diary.  They develop because your gut has been damaged (or is continuing to be damaged by gluten).  You might consider digestive enzymes (use certified gluten-free ones) and stick to whole well-cooked foods (including fruit) for a month or so.  I can tell you that I could not eat eggs for years.  Now I eat them daily.  Same for hard-to-digest things like nuts and crunchy fresh veggies!   Check out our Newbie 101 section pinned under the "Coping" section of this forum.  Review it to be sure you really are gluten free.  Then give yourself some time to heal.   I hope you feel better soon! 
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