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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.

Body Pains
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Hi, I have been miserable with bottom of my feet pain, lower back pain, hip pain and just feeling achey all over. What can be done about this and is it normal for a person with celiac disease to be so achey all over. I don't get the sleep I need because I am in such pain all the time. Any answers or help would be apreciated.

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Hi, I have been miserable with bottom of my feet pain, lower back pain, hip pain and just feeling achey all over. What can be done about this and is it normal for a person with celiac disease to be so achey all over. I don't get the sleep I need because I am in such pain all the time. Any answers or help would be apreciated.

This is one of my major symptoms along with insomnia. I am giving up corn and eggs because I tested positive for them on a York test. I'm still having problems sleeping. I take Zoloft and Klonopin. He wanted me to try Trazadone but I sleep all day instead of at night. I was recently glutened from the drywall paste which was being used in our new house. I feel better than I did but still can't get rid of it. I would feel so much better if I could just sleep all night and didn't have the pain. It's sounds like you might have fibromyalgia. Sometimes a small doese of Amitryptiline can help, it helped me when I first went gluten-free. I will ask my MD about it next month, maybe it would help to take it again. Hope you find some answers, you are not alone!

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Same here, but at least it's clearing up a bit I think. It was getting better awhile back, then took a nose dive again a few weeks ago :(

From what I've been reading, various organs are all suffering in some ways, partly due to lack of nutrients, and partly due to toxins leaking in from the gut. The more foods I cut out, the better I feel, but the trade-off is energy, hunger, etc.

I've also just read about plastic containers leaching small amounts of substances which might ordinarily not be noticed, but when the gut leaks, more of them get into the blood stream. So I'm probably going to replace any plastic containers with good 'ol glass.

There is a Homeopathic remidy called Berberis vulgaris which I've recently run into, and it sounds like something which may benefit many Celiacs. I'm still hesitant to try it, but it's natural as opposed to the drugs most doctors prescribe.

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Glutened from the drywall paste being used in your house? Are you serious? Do you mean the fumes or what? I thought gluten had to be ingested to cause Celiacs a problem.

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Glutened from the drywall paste being used in your house? Are you serious? Do you mean the fumes or what? I thought gluten had to be ingested to cause Celiacs a problem.

I was trying to be helpful to the contractors. Every night I swept up the dust which had fallen to the floor. It got in my hair and all over my clothes. I had to shampoo every night and you know what they say, just a little dab will do you. I got so glutened that i was unable to walk to the doctors office. Of course he had no clue, so i got on the board and ravenwoodglass figured it out. I'll always be grateful to her, I thought I was crippled for life! Just remember drywall paste contains GLUTEN!

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Hi, I have been miserable with bottom of my feet pain, lower back pain, hip pain and just feeling achey all over. What can be done about this and is it normal for a person with celiac disease to be so achey all over. I don't get the sleep I need because I am in such pain all the time. Any answers or help would be apreciated.

I remember the worse I've felt was about 10 yrs ago when on vacation in florida. I had joint pain come on out of nowhere. Then the restlessness at night. I concluded it was the sudden change in climates. I went from cold dry air from WI. to humid hot sticky wet weather. I even noticed the wall paper was peeling in the cheap motel room we were at and I looked under it and there was mold growing. I told my dh we had to leave the motel because of the mold problem. He wasn't happy but could see I was miserable. We ended up in a very expensive motel :o but I got better and could finally sleep.

So mold will usually be the culprit in my joint pain and also weepy and tiredness. Which has more to do with candida and leaky gut.

gail

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I used to have SEVERE joint and muscle pain, which initially stopped when going gluten-free, but came back three months into the gluten-free diet. I then figured out I am intolerant to ALL lectins (not just gluten). They were causing the joint and back pain (amongst many other things). And I am intolerant to salicylates as well, which caused the muscle pain primarily. I am only speaking of pain here, omitting the million other symptoms.

Foods high in lectins are: All grains (including rice and corn), eggs, dairy, legumes (including soy) and nightshades.

The foods highest in salicylates are: Honey, almost all herbs and spices, nightshades, berries, juices, most nuts. And Aspirin (which is 100% salicylic acid) could put me into anaphylactic shock.

You may want to check out the sites I am linking to in my signature. In my opinion, EVERYBODY with fibromyalgia (or fibro-like symptoms) has intolerances causing the pain, brain fog etc.

I was for years on codeine 24 hours a day for the debilitating pain, which often I had to supplement with extra strength Tylenol, just to manage at all. Even with high doses of painkillers I was still in pain, but had to limit them to be able to think and to drive.

Since going gluten, lectin and salicylate free (and by the way, nightshades are high in both lectins AND salicylates) I don't usually need ANY painkillers any more. Just for the occasional migraine or when eating the wrong things.

Oh, and I react very strongly to mold as well.

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Hi, I have been miserable with bottom of my feet pain, lower back pain, hip pain and just feeling achey all over. What can be done about this and is it normal for a person with celiac disease to be so achey all over. I don't get the sleep I need because I am in such pain all the time. Any answers or help would be apreciated.

----------------

Oh yes, yes and more yes. I am newly diagnosed and yes it is all related. If you a re new to gloing gluten free, part of this I think is because your body is detoxing, or if its been a while, you have all this built up in your body and you may have mineral issues causing bone pain, which if after a couple of weeks does not go away you should have a doc check out.

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Ursula, about salicylates, since broccoli and spinach apparently have high amounts, as well as tons of other veggies and fruit, does that mean you can't eat those either? Or have you identified certain types of salicylates as safe for you?

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Hi, I have been miserable with bottom of my feet pain, lower back pain, hip pain and just feeling achey all over. What can be done about this and is it normal for a person with celiac disease to be so achey all over. I don't get the sleep I need because I am in such pain all the time. Any answers or help would be apreciated.

You just described what I am going through now. Except I would add a weak and heavy feeling in my legs and arms. I have been hoping it is due to only having gone gluten free 7 weeks ago. All of it just came out of nowhere a week ago. My regular doctor referrred me to a neurologist who says he can't find anything wrong or concerning but is checking my B-12 levels and tyroid. I am thinking it has to be from previous gluten consumption. Today, I am feeling better so hopefully it will pass soon. Good luck.

Sarah

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Ursula, about salicylates, since broccoli and spinach apparently have high amounts, as well as tons of other veggies and fruit, does that mean you can't eat those either? Or have you identified certain types of salicylates as safe for you?

I can eat things like broccoli and spinach only occasionally, if I make sure that for the rest of the day I eat only things with no salicylates at all.

The only fruits I can still eat are peeled pears, peeled golden delicious apples and a banana once a week (don't know why I can't tolerate those). I initially ate pears every day, but developed an allergy to them. So, I avoided ALL fruit for a couple of weeks, and now I can eat a pear once every couple of days or so.

All things that are high in salicylates are unsafe for me, and I can't have them. If I do, I'll get symptoms of bladder infection and pain. Fortunately, that usually only lasts a couple of days.

The only vegetables that contain negligible amounts of salicylates and are therefore safe in any amount are, white/green cabbage, celery, bamboo shoots and rutabaga. Then there are the one I can have in limited amounts, and not too many each day, since it adds up. I go over a certain limit, and I will know!

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:D

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Oh yes, yes and more yes. I am newly diagnosed and yes it is all related. If you a re new to gloing gluten free, part of this I think is because your body is detoxing, or if its been a while, you have all this built up in your body and you may have mineral issues causing bone pain, which if after a couple of weeks does not go away you should have a doc check out.

Thank you very much, you no I just feel like I should be feeling better instead I feel terrible. The Dr. gave me something for the pain but it only helps alittle. The problem I think is I don't have a Dr. that really understands all the different things that are attributed to gluten. I just feel like no one seems to believe me or take me serious, even people I work with kind of blow me off. I am getting pretty discouraged with this whole mess. I have really been trying hard to do what is right for myself but it's hard when you feel like crude anyway. What are mineral issues?

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    • Feeneyja and Captain NCGS, and Ironictruth It could be SIBO or it could be NCGS as Captain NCGS pointed out. see this research that matches your 84% of SIBO patients. https://www.celiac.com/articles/24058/1/Large-Number-of-Irritable-Bowel-Syndrome-Patients-Sensitive-to-Gluten/Page1.html Below I summarize their findings I quote “nearly 84% of the gluten- free placebo group showed a significant improvement in symptoms compared to just under 26% for the gluten consuming group.  This study confirms that a large number of patients diagnosed with irritable bowel syndrome are sensitive to gluten.  The team (of doctors) suggest that the term of IBS might be misleading (you think) and may change or delay an “effective and well-targeted treatment strategy in gluten sensitive patients”. “ This is in IBS patients already who fulfilled Rome III (lesion) criteria.  They should at least be considered Non-Celiac Gluten Sensitivity (NCGS) but that would be to admit NCGS is a real condition. If you are having NCGS symptom’s (Marsh Lesion) aka Rome III lesions then why is the diagnosis not NCGS instead of IBS?  The problem is most NCGS (apparently 84%) is misdiagnosed as IBS in a large number of cases or possibly SIBO in your case Feeneyja. Even when 84 % of those with IBS show sensitivity to gluten the diagnosis of Non-Celiac Gluten Sensitivity is not confirmed by a simple gluten antibody test and people  consider Non-Celiac Gluten Sensitive (NCGS at least in the medical community apparently) a myth rather they diagnosis someone’s digestive problems with IBS of an unknown cause instead of admitting gluten is the trigger thus allowing them to avoid what is considered a mythical diagnosis to some in the medical community. By all means if  you have been given an IBS or SIBO diagnosis insist at the least on a gluten antibody test and you may save yourself many years’ of suffering before the doctor’s figure out that Gluten is the trigger then you have hope for recovery if you get the right disease. And I don't mean NCGS. Because even this too is confusing low stomach acid I believe with IBS, NCGS and even SIBO. See my posterboy blog post about why  I think this is. JMG aka Captain NCGS I referenced the Columbia University Medical Center (CUMC)  research on NCGS that I think proves your point and mine. here is the care2 article that I think summarizes it well. http://www.care2.com/causes/new-study-confirms-existence-of-non-celiac-gluten-sensitivity.html NCGS is on the "Celiac Spectrum". quoting dr. hyman from the huffpost 5+ years ago and still people seem them as different diseases (or at least deny the existence of the one over the other) http://www.huffingtonpost.com/dr-mark-hyman/gluten-what-you-dont-know_b_379089.html "When you get these tests, there are a few things to keep in mind. In light of the new research on the dangers of gluten sensitivity without full blown celiac disease, I consider any elevation of antibodies significant and worthy of a trial of gluten elimination. Many doctors consider elevated anti-gliadin antibodies in the absence of a positive intestinal biopsy showing damage to be “false positives.” That means the test looks positive but really isn’t significant. We can no longer say that. Positive is positive and, as with all illness, there is a continuum of disease, from mild gluten sensitivity to full-blown celiac disease. If your antibodies are elevated, you should go off gluten and test to see if it is leading to your health problems." and the columbia research bears this out. ironictruth you want to catch it at the NCGS stage before it becomes full blown (villi burned to the ground) Celiac disease. You are right to run from the burning house (antibodies) causing you a weak but "positive" diagnosis. This concept of the biopsy "proven" diagnosis is archaic at best and barbaric at worse in this age of serology proven diagnosis of NCGS before the villi burns to the ground so to speak. see this online article by dr. rodney ford that discusses why this is today. http://drrodneyford.com/extra/documents/236-no-gold-standard.html and he too (though in minority) is forward enough thinking to diagnose his patients with serology alone. Why would we use a standard 60+ years old when modern medicine can diagnose the disease much better and much, much sooner than what till there is stage 3 marsh lesions. The dgp test you had can diagnose it the intraepithelial lymphocytes (IEL)  stage. That is good news.  The villi are already smoking (using my analogy) of a burning house from antibodies attacking the body. Problem is and I mean this as a complement to SIBO girl and Captain NCGS (I was this in an article about the ZIKA outbreak patients talking how much more they (those affected by the disease) knew than their doctor's who where treating them at the time) we (us) have become doctor's without diplomas'. One of us each has become an expert at recognizing SIBO, NCGS and Pellagra. The question is which one is right??? Maybe we are all right by degrees. I believe NCGS can be confused for SIBO. But I also believe and the research confirms it in my mind that low stomach acid mimics many of the symptom's of both SIBO and NCGS. So that tells me there is still a disease not yet correctly identified. To me the disease that answer's the most questions in my mind is Pellagra. Ironictruth, Freneyja, JMG taking a b-complex can disprove or prove this theory. here is the full paper by Prousky. http://orthomolecular.org/library/jom/2001/articles/2001-v16n04-p225.shtml decide for yourself but people routinely get better in 3 months time of taking  niacinamide 2 to 3 times daily or a b-complex and niacinamide 3/day for 3 months. The dosage does not matter.  It is the frequency. And a month will be enough to see improvement (100 count bottle).  I used to recommend to my friends a 100 count bottle because it was the most common way to find either Niacin/Niacinamide or a b-complex but when I found out your body could store 3 months worth in the liver and my experience with b-2 (riboflavin) and angular cheilitis (look it up on google images if you don't know what it is) for years probably 5+ I could not get rid of it for nothing. And I took b-2 (for a 100 count round) once before but learned b-vitamins needed to be taken frequently for best effect. So I bought a 300 count bottle (3 months worth) and took them (b-2/riboflavin) 2 to 3 day and the angular cheiliitis (leaking lips, cracked fissures at the side of the mouth) and it was nice and crusty went away and they have never come back since. but this was after I took the B-3 Niacinamide for a couple months firsts then I was able to absorb the b-2 (riboflavin) now and I put this condition in remission (i did not say cure) because if I get low again it might come back but remission. The same thing happened to my GI problems associated with NCGS (serology positive celiac diagnosis) without a biopsy proven (thank God) diagnosis. And that is my story. I would suggest jmg, feeneyja and you too too ironictruth buy a b-complex and see if a couple three months regimen might help put your GI symptom's in remission. we already know from research 5+ years ago that b-vitamins help celiac's with their well being. https://www.celiac.com/articles/21783/1/B-Vitamins-Beneficial-for-Celiacs-on-Gluten-Free-Diet/Page1.html quoting "For 6 months, patients received daily doses of either a placebo, or of B vitamins in the amount of 0.8 mg folic acid, 0.5 mg cyanocobalamin and 3 mg pyridoxine." They summarize quoting "These improvements, the normalization of tHcy levels, together with the substantial increase in well-being, led the research team to conclude that people living gluten-free with long-term celiac disease do indeed benefit from daily supplemental doses of vitamin B, and that doctors should consider advising the use of B vitamins supplements for these patients." So I am just saying what the doctor's recommend when recommending Niacinamide for your GI problems that Pellagra could be mimicking (masking the true cause) hence the 58% of celiac also have pellagra (that a majority) of Celiac's also are known to have. I am not a doctor.  But You can be a professor though with a masters so while I do preach Pellagra as a co-morbid condition of NCGS/Celiac disease it is only because the doctor's with diploma's research bears this out. So I try and make more people aware of this fact. (no I do not have  a master's either though a friend once said who has a masters said my research would qualify me if I had taken the courses) (And yes I know B-3 was not studied in this paper) but maybe now is the time to point out it should bee! Or SIBO girl, and Captain NCGS you can try it (B-3) for yourselves and see if it helps you the way it did the Pellagra kid/posterboy. If you want to study this topic more I summarized many of thoughts in this posterboy post https://www.celiac.com/gluten-free/blogs/entry/2103-why-and-how-pellagra-is-often-confused-with-celiac-disease-andor-other-gidigestive-problems-the-science-of-pellagra-a-hidden-epidemic-in-the-21st-century-presentingrevealing-as-ncgs-andor-possbily-celiac-disease/ I wrote a blog post that also said "I had Celiac disease but developed Pellagra" but I really think it is the other way around. (it is linked in the above post) if you want to read it there so I won't post it again. I was a pellagrain who was diagnosed first as a celiac.  The same way a SIBO might first be diagnoses as a IBS or NCGS patient.  Or the way a NCGS is first diagnosed as a IBS patient 84% of the time. Remission is possible I believe if and when you find the right/correct disease. And any of these GI conditions can be confused for the other and SIBO girl and Captain NCGS makes good points. But it seems to me Pellagra can be confused for not only the SIBO, NCGS, but if the research is right 58% (the majority) of Celiac's and it is easily reversible in 3 months time. You will not know if you are not willing to try it. **** this is not medical advice just deep research and my own experience with taking Niacinamide. But I will say  I am not the only one who has been helped on this board taking Vitamin B-3. I want you Iroinctruth, Feeneyja, Jmg to be the next ones. I know this post is way too long as usual but I had a lot of ground to cover. quoting a friend 2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included. posterboy by the grace of God,
    • After my crash and burn gluten challenge of 2016, I wander off yet again Into the land of eastern and alternative medicine to heal. While I am grateful to many (not all) western medicine  Dr s of the past , for the past 2 decades the ones who give me relief for my lifetime ails are the alternative/eastern practitioners. I'm not starting a debate as both branches have their strengths, often the shame is they are seperated in healthcare, for likely humanity and public health imo would be best served by their encouraged collaboration/mutual recognition,but alas not my problem to solve. Much bigger then me and quite frankly, I'm too busy healing to tackle that mountain. Regardless, I now have "shoes that fit my carpet bag " of decades of multiple misdiagnosis /undiagnosis collection. They can be combined and labeled celiac and fibromyalgia. I was shocked at first at the news, I consider those really serious. Is AWOL really that ill? I've read up more  on both disciplines descriptons etc for these conditions, I'm in shock for the "shoes" fit perfectly . I know based on western test results I'm far from textbook/ gold standard celiac (but I failed to get past day 6 of my gluten challenge -likely speaks for itself) and fibromyalgia is quite demeaned/dismissed from my past knowledge amongst the western medicine world and greater society. (Friends /family in western medical fields) Is this still the case? My lifetime gi issues, the 30 plus years multiple chemical sensitivities ( go back to childhood-I keep very close to the vest), 20 plus years symptoms of muscle issues / myalgia, now have the names of celiac & fibromyalgia. Mixture of feelings of relief to be recognized, but also knowing my named illnesses are likely not recognized or are minimised by my western medicine trained family and friends and greater society. Can anyone offer some encouragement to help me cope at this time of healing? My accupuncture visits have been truly helpful, but my last visit is giving me a lot to process chemically, biologically, and spiritually. It's like someone unleashed the flood gates of all the symptoms of both illnesses at once in a combined package for me to experience in a one transparent package.  Very enlightening and to be blunt I feel like crap. So it's time to accept the package names and all, the curtain was lifted and the waxing and waning symptoms of fibromyalgia we're released. Please share any positive support or stories you have on coping with celiac recovery, celiac/fibromyalgia, and  healing by accupuncture. It will be much appreciated. As it is abundantly clear AWOL is here to stay on the celiac.com forums. Thanks  
    • https://www.celiac.com/gluten-free/topic/116482-supplement-and-foods-you-take/ ^ I did this a while back where some of us have posted what we take and eat to get our nutrients. Mines changed a bit since then since I can not eat any grains, sugars or fruits.
    • I take 2 Slice of Life gummy multivitamins and drink 2 Ensure high protein per day. Both are gluten free.
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