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 SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan 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-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs 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 BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.For Additional Information: Subscribe to: Journal of Gluten Sensitivity
I just realized I didn't delete the where do you live. The only reason I asked is because you were talking about going to Mayo Clinic; Rochester, MN, I assume. If you live anywhere near there, I know of a good natureopath in Billings, MT that I could refer you to. Natureopath's can be hard to find.
I would go to a natureopathic doctor. It sounds like your doctors don't have any ideas to help you, so I think you need new doctors. A natureopathic doctor's focus is to find out what is causing your problem, not just find something to treat the symptoms. The empathy they have to offer and the ability to listen to you to help you resolve your problems is so refreshing, and something that is almost impossible to find in the mainstream community. Alot of clinics now have natureopaths on staff (and generally are covered by your insurance company) because the mainstream medical community has been ignoring their patients and just treating their symptoms with drugs rather than trying to figure out what is causing the problem. I guarantee that a good natureopath will get you turned around right away.
I also suspect that you have not totally eliminated gluten from your diet. It's challenging: research this web site to get the gluten free foods as well as a list of the things that have hidden gluten; they are many & varied. And get to a good health food store to get stocked up right away on gluten free foods. You might have other food intolerances; the natureopath will probably have you go on the allergen elimination diet to find out if anything else is compounding your problems.
You also need to start taking probiotics right away; you need to get the good bacteria back in your stomach. You are probably deficient in many vitamins & minerals as well; that will need to be a part of your workup. Where do you live? Good Luck,
My eye twitches were caused by supplementing too much calcium in my diet. I have osteoporosis so had been told to supplement with calcium. However, I was getting enough calcium in my diet from food sources, so didn't need the extra. I went off the calcium for a month, reintroduced it and got the eye twitches right away. Many celiacs are Vitamin D deficent; once I supplmented with that my aching joints & muscles went away. Are you sure you're not getting gluten or lactose inadvertently? Whenever I do I get diarrhea and gas. I had been on a calcium supplment for months before realizing that it was wheat free, but not gluten free. I just read that someone's Dr. told them that celiacs should not eat soy; that it had the same components of gluten; perhaps that is your problem.
Once I became gluten free & got up to speed on my Vitamin D my joint & muscle aches went away; it was amazing; I thought I would just have to live my life with them! I agree you need to find a Dr. who is knowledgeable about Celiac; that and keep inquiring here & on the web. There's no better advice than from people who have gone thru what you are. You're starting to read alot more about the reasons not to take Actonel, etc. For me & alot of celiacs you are also lactose intolerant; all of the pills for osteoporosis contain lactose. The other concern is that they stop the old bone tissue from leaving your bones but also prevent new bone from growing. I think the most important thing is making sure you're getting enough of all of the essential vitamins and exercising religously. Most celiacs are deficient in certain vitamins & minerals; I think that is the key along with weight bearing exercise. There is a really good website called Woman to Woman; even if you're a man the article on osteoporosis talks about this issue in more detail. Good luck; you're almost there!
I've never had the itching associated with PBC. The one thing I have learned is that vitamin deficiencies are more common than most Drs. believe. They have very little training in nutrition in medical school so don't have a background in it (plus there's no money in it) Just read an article about Vitamin D deficiencies in US News. They believe it is a trigger for autoimmune diseases, and that most Americans don't get enough Vitamin D. If you live north of Atlanta, GA, you can't get Vitamin D from the sun. A nutritionist at a celiac conference I went to said that most Celiacs are Vitamin D deficient; the disease (or the gluten) takes away the bodies ability to absorb the vitamins & minerals from the food you eat, the result being that most Celiacs end up with osteoporosis.
Food is the only thing we put in our body, so it seems to me to make perfect sense that when our absorption process gets screwed up that we are going to end up deficient in something. Our skin & nails not being healthy can only come from a deficiency. The interesting thing I just learned about from my osteoporosis Dr. is that calcium will not be absorbed by your body unless you take Vitamin D with it. I had been trying to get more calcium from food sources, but there are none that have Vitamin D & calcium together unless they are fortified. The other thing is that you should never take calcium with a multi vitamin; the minerals do not allow the calcium to be absorbed. You need to take calcium & vitamin D at a different time of the day than when you take a multi vitamin.
It has been quite a process to get to all of this information even tho it seems rather simple. I never got anything really helpful from my GI Dr. other than the disease diagnosis and then to take Urso. I preferred to find out what was causing the problem & do what it takes to prevent it rather than taking a pill to treat the symptoms. My natureopath is the one who got me going in the right direction. Nutrition is their game, not taking something to mask the sypmtoms.
I have been gluten free for 3 years now, but in the last year have been struggling with upper right side stomach pain. I've finally found out it is from eating high oxalate foods. Since I don't eat either gluten or lactose I was eating more high oxalate foods. (Oxalate forms kidney stones; that is what causes the stomach pain.) I had been warned that when you have a food intolerance you're more likely to develop another intolerance because you limit your diet to so few foods. The key is to eat a varied diet, but until gluten is eliminated, your son will not get better. This web site is invaluable; I have gotten my best information here. Good Luck!
Sorry it took so long to get back here; holidays! There is an organization called pbcer's.org. I noticed there is a study being done to see if Vitamin D supplementation can have an effect on PBC; at Mount Sanai Hospital. It was too far away for me to participate in. Since most celiacs are Vitamin D deficient, it will be interesting to see if it is the case. Have you been tested to see if you are Vitamin D Deficent? Not too many doctors are familiar with PBC. Dr Lindor at the Mayo Clinic in Rochester, MN is very knowledgeable about PBC. My doctor is Bradley Zins at the Billings Clinic, Billings, MT. The PBC web site can help you with a Dr referral, depending on where you live.
The connection between PBC & Celiac is acknowledged; which causes which will be interesting as things unfold.
Good Luck, Dee
Before I found out I was gluten intolerant my osteoporosis worsened after 2 years of taking Actonel. Being gluten free allowed my intestines to heal & for my stomach to metabolize what I was eating. My bone & muscle aches stopped after taking a Vitamin D supplement; most celiacs are Vitamin D deficient. You have to have the hydroxy 25 vitamin D test done ( the simple Vitamin D test is not good enuf) Now 2 years after stopping Actonel my bone density has improved and my joint & muscle aches are gone. There is hope for normalization without medication, if you find out the underlying cause of your problem. It is a journey that takes persistence. Good Luck!
Before I found out I had celiac disease I had headaches every day. Now that I'm gluten free they are gone. If I do get gluttened I will get a headache; I no longer get diarrhea. Your reaction to gluten can change as you have less in your diet. The important thing is to get good at finding where the gluten is. It is very easy to inadvertently ingest gluten. Your daughter will have to be the most vigilant; it must be impossible for you to always prevent it. To be a celiac has to be the hardest on children. Good Luck!
I was diagnosed with Primary Billiary Cirrhosis before I found out about my Celiac Disease. I was on Urso (the only drug to treat PBC) for 4 years. The Urso kept my diarrhea in check, which was my reason for going to the gastroenterologist. My other symptoms of joint & muscle aches and worsening osteoporosis prompted my Dr. to look for other causes ( I was also taking Actonel for the osteoporosis). When he found out about the Celiac he also found out I was vitamin D deficient, which is common among Celiacs. Resolving those 2 issues got me going in the right direction, but my intestines weren't healing a year later after a 2nd endoscopy. I read in this web site about someone who had the same 2 conditions as me and his Dr. told him the only way to heal the intestines was to stop taking the Urso along with the gluten free diet. That is what also worked for me; 2 years after taking no medication for either the PBC and the osteoporosis, my liver enzymes are completely normal, and my osteoporosis has improved! Incidentally, my Drs did not do a liver biopsy, just the blood work which can confirm PBC. They said there was no need to do an invasive test when the only treatment for it was the Urso.
Are you already diagnosed with Celiac? Whenever I inadvertently injest gluten I get pain in my liver; it is also what spikes my liver enzymes. I was taking a calcium supplement for a few months before I finally figured out it had gluten (it was wheat free, but not gluten free).
Good Luck; this web site has been an invaluable source of information for me.
For me I believe the vitamin D deficiency was the most significant factor in my muscle & joint aches. Celiac disease causes the vitamin D deficiency, so if you continue to get gluttened, you will continue the cycle. I was amazed at how fast my body responded once I supplemented with 2000 IUD's of vitamin D (once you get your levels back to normal, cut back to 1000.) I have read alot of information indicating the deficiency is either the trigger or the cause of fibromyalgia. I also did alot of intensive massage thereapy (deep tissue), which was critical for me. My massage thereapist has been able to help alot of people with fibromyalgia. I know some people with it who don't want anyone to touch them because it causes too much pain, but I think it is the only way to get past the illness; I would take Advil before I went in to help lessen the pain. I would go in for 2 hour sessions every 2 weeks, which were literally torture, but they worked! The muscle knots which you develop by your body not getting the nutrients it needs from the celiac have been there quite a while and will not go away on their own, much like a rope once it is knotted; it always wants to go back where it was once tight. The good news is that you can get past the problems that the poison gluten has caused your body; but it takes alot of hard work & dedication. I have found walking & stretching to be the best exercise to help get rid of those nasty knots. Good Luck!
NOW, liquid multi, available at www.nowfoods.com, is gluten, dairy, yeast, egg free. It is very hard to find a liquid multivitamin that is gluten & dairy free, but this is one. Have they checked your vitamin D levels? Most celiacs are vitamin D deficient; it was key for me to eleminate my muscle & joint aches. Good Luck!
My muscular & joint aches were from being Vitamin D deficient which most celiacs are. I supplemented with 2000 IUD daily until I got my values up to normal. Now I do 1000 IUD a day. I have read that 40% of our population is Vitamin D deficient; many Dr's believe it is a trigger for many autoimmune disorders. The medical community is trying to get the recommended IUD raised to 1000/day from the now 400/day. The hydroxy 25 vitamin D test is what is needed to get an accurate test of your vitamin D. In addition, exercise is also very important. If you are deficient you probably have been for awhile, so your muscles are not as healthy as they should be; exercise will help get them back to where they need to be. The other thing is to keep searching for hidden gluten. I have been gluten free for 2 years, and still get tripped up. The easiest spot is in things that say they are wheat free; I think every time I have tried something that was wheat free it was not gluten free!
Good luck, and stay tuned to this site; I have been helped much more here than from my Dr.