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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 Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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spunky

I Can't Help But Wonder About This...

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I'm a self-diagnosed celiac and have been gluten free and healthy for the past nine or ten years...losing count by now. My daughter went gluten free because she thought it would be a good idea at the same time, since, even though she didn't seem to have any issues with gluten, she had noticed years earlier dairy of any kind really made her sick...given my gluten experience she thought it might be a good idea to give it up and possibly avoid future problems. Since then, she had a son, now five years old, and keeps her family gluten free and off of processed, junkie stuff, food colorings, etc. Three or four months ago she became very ill and was diagnosed with both Graves Disease and Hashimotos. This was a shocker for us, since she had been gluten free for many years. Anyway, in our efforts to find answers, we ran across accounts that indicate that globally, these autoimmune thyroid diseases are found in countries after they iodize their salt. It seems that after a few years, the levels of iodine may get out of control and excessive, and are actually not well regulated and cause these autoimmune diseases to crop up in some individuals. I've read there is some connection between skin disorders in celiac a and iodine excess, or what amounts to excess for some individuals. Now I'm wondering if the reason celiac suddenly exploded in industrialized countries could also have some connection with these countries having iodized salt which eventually finds its way not everything and somehow causes this or other autoimmune disorders is some people. I've searched for clues on thus, out of curiosity, plus also out of a new distaste for iodized salt, plus the dissatisfaction of having the ability to know what items may or may not have iodized salt hidden in the ingredients. I'm wondering about the safety of this practice. I'm not much into conspiracies, etc., but also wondering if the underlying reason iodine us everywhere in the food supply these days is because if governments' fears of nuclear power plant accidents or leaks, and their not having the confidence they could deal with widespread radiation sickness-- iodize everybody up real good and maybe you have no problem? But besides that little bit if paranoia about that, I can't help but wonder if the reason there are now so many celiacs, so many thyroid autoimmune disorders, so many autoimmune disorders if so many kinds, is simply because in industrialized countries we are overdosed on iodine. Anyone have thoughts or insights into this idea????

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Good theory but Im going to suggest your daughters immune problems came from damage in her youth. Kids immune systems are set in their ways by the time they are eight. If your having trouble with milk , celiac disease is already there years ealier.

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Foam, could you show us any scientific studies showing that kid's immune systems are "set" by the time they are eight? Also, could you show any research that says if a person is lactose intolerant they have already had celiac for years?

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Well it seems weird that she was fine for the past 20 or so years, and then suddenly came down with these conditions. We keep reading if you stop gluten you'll find improvement from autoimmune thyroid or any kind of autoimmune conditions, but as I said before, she hadn't touched gluten for a decade...she doesn't let her son eat it either and her husband felt so much better when they quit he doesn't touch it either. So it isn't much help, just confusing when we keep reading about the gluten connection. I've seen hints that iodine might somehow be vaguely related to gluten reactions in the skin, and that, plus the fact that these autoimmune thyroid conditions are common only after a country begins ionizing their salt. Knowing that autoimmune conditions are common in industrialized countries, it gets me wondering if there is something tinkering around in our immune systems...something found only in these countries that might manifest itself by way of gluten intolerance or something else autoimmune. It's kind of a tough thing to look up, because you have only vague tidbits of info here and there...but anyway...I thought if anybody else here had any further tidbits than what I've come across things might start making sense. One thing I forgot to add...my daughter has an old cat who also is hyperthyroid...has the same symptoms. The vet had her on the same medicine as daughter, but then ordered a new, prescription diet that has allowed most cats to get off of the medicine, avoid thyroid surgery or other treatments, just by sticking to the prescription chow. The secret ingredient: no iodine, or at least low iodine. We need some iodine, but heck, we need some lead too, but too much will mess you up. But in the cat food they leave out iodized salt, it other added iodide, and they don't out in fish, which is high in iodine. The vet says most cats are normal, not sick anymore, once they get onto the diet, This was what really got us reading up on the iodine...and wondering. My daughter is attempting a low iodine diet, herself, now too...it isn't so easy with people. Since it seems you can only guess the iodine content of anything with salt, sea weed is often added to things as thickeners, etc., iodine is in red 3, which is in many medicines, pills, etc., well it's hard to know. We have pretty much gone "Amish-like," with this, buying only canning-pickling salt, and making every last thing from scratch: grinding our own meats, making our own baking flours, making all breads, crackers, etc....everything. We live on the same road so dietary decisions are usually mutual efforts, which is helpful. We are hoping it works for people like it works for cats. But the answers to why we, in industrialized countries, have these health conditions...that's what would be good to find out. And, I love that guitar, Bartfull...Ovation, I presume???

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Yeah, I am an Ovation fanatic. Used to work there as a matter of fact. That was almost as much fun as what I'm doing now - running my own guitar store. :D

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Foam, could you show us any scientific studies showing that kid's immune systems are "set" by the time they are eight? Also, could you show any research that says if a person is lactose intolerant they have already had celiac for years?

You can probably read up on immune systems somewhere and how it is trained by gut flora in the early years. Im just repeating what ive learned from my doctors. You can sometimes achieve cures in auto immue type diseases in young children, usually not in adults. Although they think the adult immune system can change but they relearning must be veeeeery slow.

 

As for lactose thats almost always the first sign of gut damage caused by celiac disease, getting an actual strong immune system response to gluten doesnt happen until much later.  Muuuch later sometimes, like 20 years.

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I play guitar, fingerpicking style, clawhammer banjo and old time fiddle...I love beautiful instruments! You are lucky to have a guitar store!!! What fun! Well I have heard stuff like exposing kids to dirt, allergens, etc., in their early years might prevent allergies to those things later on. My daughter was breastfed, raised around animals, in the woods, heating with wood, etc., so her immune system should have gotten a decent start, if that really would be a factor. But you're u have to ask yourself, why do underdeveloped nations have the same health issues as developed ones once they get on board with us? And there is actual documentation that as countries iodize their salt, autoimmune thyroid diseases begin to emerge. Of course you need some iodine, but in countries such as the u.s., ionizing since 1924, the iodine content of foods of all kinds has gone unchecked for decades and could be excess for many people. I've read a connection with dh in celiacs, an iodine connection....its just got me wondering about possible other connections between celiac, thyroids, and just flat out autoimmunity in general. In he meantime, the cat, daughter, are trying for low iodine...the rest of us are heading there fast ( but have other food to get rid of first). We'll see what happens.

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I play guitar, fingerpicking style, clawhammer banjo and old time fiddle...I love beautiful instruments! You are lucky to have a guitar store!!! What fun! Well I have heard stuff like exposing kids to dirt, allergens, etc., in their early years might prevent allergies to those things later on. My daughter was breastfed, raised around animals, in the woods, heating with wood, etc., so her immune system should have gotten a decent start, if that really would be a factor. But you're u have to ask yourself, why do underdeveloped nations have the same health issues as developed ones once they get on board with us? And there is actual documentation that as countries iodize their salt, autoimmune thyroid diseases begin to emerge. Of course you need some iodine, but in countries such as the u.s., ionizing since 1924, the iodine content of foods of all kinds has gone unchecked for decades and could be excess for many people. I've read a connection with dh in celiacs, an iodine connection....its just got me wondering about possible other connections between celiac, thyroids, and just flat out autoimmunity in general. In he meantime, the cat, daughter, are trying for low iodine...the rest of us are heading there fast ( but have other food to get rid of first). We'll see what happens.

There are recent studies which show a much greater incidence of immune system disease in kids which have had antibiotics in early life, either at birth or as infants. The one I read was pretty much no antibiotics no disease it was about as conclusive as you get in a study. I do think antibiotics are the major source of modern disease, because they mess so heavily with the gut flora which itself is the major balancing force in our immune systems and body as a whole. It not only it's effects on the person it's directly been given too either. You only have to give one mother antibiotics once before shes even a mother and youve straight away killed off the bactierial lines that have been passed from mother to daughter during birth for the last.. 10s of thousands of years. so it's going to effect every ongoing generation. The species found in the remaining natural tribal women is completely different to western countries. My son was given antibiotics at birth despite my complaints about it in the birthing room.. I ended up being much more agressive with the daughter a couple years later to the point of arguing for 30 minutes about while my wife was in the bed in labour until I got my way and she has MUUUCH bvetter digestion than the boy ever did. She's one of these poo once a week breast feeders with perfect stools every time. My son has always had pretty excessivly runnny poo and every day. I'm trying to get the girl share half eaten food with him etc:p but it maybe too late. I'm always finishing her food too.. lol gota get that bacteria in somehow. I mean that doesn't have much to do with gluten (or lactose) , that's just badness for the people that carry neanderthal immune systems. But it probably changes how well trained the immune system is and how it sees these hard protiens that are mistaken as pathogens.

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Foam, I'm not trying to give you a hard time but the rule on this board is that if you make a claim, you must back it with documentation from a reputable source. So rather than telling ME to look it up, please, post some studies showing that kid's immune systems are "set" by the time they are eight, that lactose intolerance is always celiac, and that "no antibiotcs, no disease".

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We were dirt poor in Appalachia when she was growing up and had no health insurance and could not go to doctors. She grew up without medicines or antibiotics. We made herbal concoctions when we were sick. No antibiotics here.

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Foam, I'm not trying to give you a hard time but the rule on this board is that if you make a claim, you must back it with documentation from a reputable source. So rather than telling ME to look it up, please, post some studies showing that kid's immune systems are "set" by the time they are eight, that lactose intolerance is always celiac, and that "no antibiotcs, no disease".

Im only posting general knowledge. Wikipedia ok, but i cant be searching links for every little forum on the net. For years all i did was read papers and visit specialists until i was able to find my diagnosis. I learnt a lot, im still not 100% but no one else is doing any better than I am. Its worth paying attention. Just this once ill google for you to get you started on how the immune system develops. .http://www.asm.org/index.php/88-news-room/journal-tipsheets/8564-antibiotics-disrupt-gut-flora-in-infants-recovery-still-incomplete-after-8-weeks  

http://www.hopkinsmedicine.org/news/media/releases/birth_by_c_section_early_antibiotic_use_put_kids_at_risk_for_allergic_esophagitis

 

 

http://www.nature.com/news/2011/110921/full/news.2011.550.html

http://www.wired.com/2014/04/missing-microbes-antibiotic-resistance-birth/

 

Here in Australia families with unusual immune systems(like mine) are not immunised until after age 6, by then the th1 th2 balance wont shift from viral load like it does in infants. Same thing with disease, once your immune system has matured unbalanced itll always be like that. Early life is very important and all the western countrys have been doing it very wrong. My local gp has flat out refused to prescribe antibiotics to anyone aged under 3 for some years now. If you really want them you need to change gps. He refuses to be responsible for the consiquences. I trust the guy with my life and on his advice I argue and stand my ground in the birthing room. Very small risk of things going bad but very good chance of things going right. 6 months ago my wife endured a near 4th degree tear 1.5 litres of blood loss, two transfusions and 2 hours of post birth surgery just to get bacteria into the last child despite having exsisting damage and could have opted for a c section. Shes well read on the subect too. Theres nothing more important than this stuff in medicine right now, if you dont want to believe it thats ok, it doesnt effect me. Ill still be zero carbing to stop my mast cells from functioning and ill still be slooooowly trying to change my immue system after it being broken in infancy by heavy antibiotic use. 45 years later im in remmision but its a tough thing to stay in control of.

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We were dirt poor in Appalachia when she was growing up and had no health insurance and could not go to doctors. She grew up without medicines or antibiotics. We made herbal concoctions when we were sick. No antibiotics here.

Celiac disease is genetic , the damage causes secondary auto immune disease. You wont see anyone from pure african stock with it because they haven't crossed out with other human species with the stronger immune systems. They will still get messed up by anti biotics though.  It should be a given you dont eat gluten if theres genes or family history(50%) of western europeans carry dq2, i dont know why anyone stil eats the stuff, its effectively a slow poison.

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Well my daughter never developed celiac disease, but stopped eating gluten around ten years ago when I did.

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Interesting articles but they don't back up your claims. All they show is that antibiotics mess with gut flora and that children born by C-section don't have the same gut flora that those born by vaginal birth get. We already knew that. But they show nothing about the immune system being "set" by the age of eight. They show nothing about lactose intolerance always meaning one has had celiac for years. And they don't show that if one doesn't get antibiotics they don't get disease.

 

It is not the responsibility of the readers of this forum to back their claims, it is the responsibility of the poster to do so.

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Spunky,

 

The science isn't here yet, but with your health issues and the fact that your daughter has both Hashi's and Grave's, a gluten free diet may very well have been a good idea!  It certainly won't hurt provided you eat a well-balanced diet and avoid processed foods as much as possible.  

 

Good luck on your future research!

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i stay away from iodine (except for naturally occuring as in fish) because, no matter how long i've been gluten free, it still makes my skin rashes flare up.  for what it's worth, i think science has MUCH TO LEARN about gut flora and its very important role it plays in overall health.  

 

my husband was tilling the garden to plant last spring and he tilled up a nest of bunnies.  their eyes were closed, they were the youngest bunch i had ever tried to feed, but i tried it anyway, as i have had success in rehabbing wild bunnies into young adulthood for release back into the wild.  ie:  when they were able to eat greens/vegetation, i would release them.  until then, i fed them 'puppy formula' that i got from the pet store.  well, they were doing pretty well, their eyes opened and they were active, so i let them try to eat grass/greens.  the next day, their little bellies bloated up and died.  i found out later that they need a certain enzyme FOUND IN THE MOTHERS FECAL MATTER in order to be able to digest anything but milk.   they acquired this enzyme by nursing therefore getting it from her body.

 

another thing i noticed is that my kids weren't as ill when they were little than my sister's kids were.  i was shocked by this, as she is a much better housekeeper than i am (i'm like:  good enough.  a little dirt won't hurt you.  husband is a big fan of 'the five second rule' etc) and she is into sterilizing her floors.   but her kids picked up every bug that came around.  mine were exposed to the same germs and were fine.  as a society, i think we're probably cleaning ourselves to death.

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Thanks...the iodine is what I'm really curious to hear what anybody knows about or has such experiences with. The gut bacteria, yes I think it's important for good health, but my daughter shouldn't have a problem with it...besides the fact that I'd breastfed her, we weren't all that clean and had all sorts of animals in close proximity, I also made our breads ( back before gluten ever got to be an issue with me) by wild fermentation, made our own yogurts, butter, etc. As I said before, she never took an antibiotic until she was in her twenties. She hadn't eaten dairy products since her teens...twenty year ago, and quit the gluten because I did, around ten years ago. Seems crazy to me, from what I've read, that she'd be such a sitting duck for these autoimmune things. I guess I'm just looking for a cause, so we can try to undo whatever that cause is, ourselves. I'm thinking it might make sense the iodine rampant in the Anerican diet, any American diet, might be something we could try to control, if it would be a factor. I realize we need some iodine, but none if us can tell how much we're getting, unless we never buy anything in a package or can, and buy only canning/ pickling salt and make every last thing we eat from scratch. We are doing this now, hoping it helps. She took prenatal vitamins while expecting get child and for three years after while breastfeeding him...I'm thinking that could have been an excess of iodine right there. It's important for pregnant women to have iodine, but I'm thinking some people can't handle any excess without getting thyroid or other health problems. I'm looking for others' experiences or thoughts on this.

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I'm having trouble understanding if there is iodized salt in everything-- I see some sources that say it has to be labeled as iodized if it is, then I see other sources that say it does not have to be labeled that way. I can't remember ever seeing a label on a package specifying iodized salt...wondering if that means it isn't ever used in packaged foods, or it doesn't have to be specified as iodized? I'm having trouble finding info as to how to know when you are or aren't getting iodine.

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I'm just guessing here but I would think the salt used in most processed foods is NOT iodized. Most companies that sell the salt we buy in the grocery store sell both iodized and non-iodized. It doesn't make sense to me that large manufacturers would iodize the salt they use before they use it. And I would imagine they get the salt cheaper if it is not iodized.

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Interesting thought. In the stores around here you just about can't find uniodized table salt. I have used sea salt for years...but just recently decided to try uniodized regular table salt...couldn't find it and bought canning/ pickling. Sea salt supposedly has varying levels of iodine. I have no idea how salt is supplied to manufacturers...id be curious to know for sure. Would be nice to know for sure that the packaged stuff isn't gonna o.d. Us on iodine. Of course, we want enough iodine, but just not too much. I see from maps on the net that we are supposedly in the "goiter belt," as far as iodine occurring naturally in soils and waterways, but then we eat stuff grown in other places too. According to goat maps, our area is NOT deficient in iodine, as opposed to people maps....ugh...seems I cannot find consistent info. But according to the goat maps, we should not have to supplement our goats with iodine, but when we had goats, we did give them a mineral complex because of copper deficiencies in our area, and it had iodine in it. So, basically I'm just confused about all of this...would we have enough without ANY efforts at supplementing from iodized salt---are we getting hidden iodine from packaged foods or something we aren't thinking of? Does iodine even have anything to do with her terrible illness, or anything else? I'm confused...desperately seeking answers,..very unsatisfied with how the doctors are handling it.

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I've been thinking. Iodine definitely does make DH worse. There are several folks here with DH who have to stay on a low iodine diet or their DH will flare. They avoid egg yolks and potato skins and iodized salt (and probably some other things I can't think of right now - dairy is one I think) and they are fine. So if there was too much iodine in the other stuff they eat they'd have problems.

 

Maybe you could go over to the DH section of the forum and ask them a bunch of questions? I bet they would have better answers for you. There are some really smart folks over there and they love to help people. :)

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I have DH and I did have to avoid iodine for a while after I went gluten free. I didn't have to worry about naturally occuring iodine in foods I just dropped iodized salt and made sure any supplement didn't contain iodine. (Some may have to be that extreme but I didn't). I also didn't worry about salt added to stuff that was prepared and even potato chips didn't have an adverse effect. I think if companies used iodized salt then I would have never healed DH wise.

Perhaps contact the FDA for their regs on the salt added to prepared foods. They would be able to tell you for sure if iodized salt was commonly used or needs to be noted on the label.

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Well I never saw any signs of iodine allergy, so I don't know.  I do have good news to report, though.  This was a long battle, where under an endocrinologist's care, she would waver between a heart rate of 160 beats per minute, to 60 beats per minute.  She was totally wasted and it was a good thing we lived close so I could watch her son.  We ended up seeing the supposed best herbalist in the state, he put her on paleo diet and gave her some herbs-bugle weed for one thing, mother wort, I'm not sure what all else.  We stayed off iodized salt, even though no doctor nor herbalist had heard anything about iodized salt being bad...the endocrinologist said not to take iodine supplements.  Eventually she started to get better.  At that point the endocrinologist wanted to either radiate her thyroid or surgically remove it.  We got a second opinion, same.  The herbalist said he thought with her improvement we should wait and see...by this time the endocrinologist had taken her off the medicines.  We finally got in to see a third endocrinologist...he thought she was doing good and actually agreed with the herbalist to wait and see.  A few months ago, the third endocrinologist released her from his care and said she was well, her thyroid levels were within the optimal range and she had no need for an endocrinologist.  She's been doing good since.  How much sense does all of that make?  We are so glad she got well, but none of it makes sense.  We've stayed off iodine, all of us eat only pickling salt.  Is that the key?  Are the herbs the key?  Did she get well because she doesn't eat gluten?  Or did she get well because of the paleo diet?  Anyway, I thought I should follow up with our good news.

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