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 am also dealing with the neuropathy....feet and toes mainly, but also some numbness going down my right leg. All my blood panels, glucose etc. come back normal. I realized this had started in a much milder way back before I was diagnosed, in early 2006. Perhaps 8 to 10 years prior I'd had little symptoms, but didn't know it was neuropathy. After diagnosis, I was not very good about compliance, unfortunately, and I'd be gluten-free for long periods, then I'd indulge. Although I was mostly gluten-free for the last year, I've been 100% gluten-free for 6 months now, and aware of an increasingly serious issue with the PN. My doctor called it "idiopathic PN", but of course, she knew zip about the gluten-PN connection. However, after research she recommended a prescription level vitamin combo that includes bioavailable vitamins that can supposedly help repair the damaged nerves. The 3 main vitamins are folate (in the form of Metafolin), Pyridoxal 5' phosphate (B6), and Methylcobalamin (B12). I researched this stuff and learned that these are the more expensive, bioavailable forms that do not need converting by the body....and that I might be one of the people due to celiac whose body cannot convert the regular vitamins in their usual B6, B12 and folic acid forms into a useable form for my body, hence a deficiency that COULD account for the nerve issues I'm experiencing, much like diabetic PN.
Anyhow, this vitamin is prescription only, no idea why that is, and it seemed expensive (this mail order pharmacy was the cheapest I could find...costs me about $58/month). I first searched out all the components to buy them separately at health food stores, and the price ended up virtually the same as the prescription give or take $5 or less. But with the separate vitamins, to get the proper amounts I was taking a LOT of pills, which I hated, and the prescription was only one small pill taken twice a day. So I gave in and tried the prescription (never covered by insurance, by the way) and I've been taking it since Feb. 5. I was told it could be 8 to 12 weeks before ANY improvement is noticed because what is happening is the vitamins are aiding the slow process of helping the nerves regenerate properly. Right now I'm at the 11 week point, and I'd say things seem ever so slightly better. I've decided to give it another 3 months and evaluate more then at the 6 month mark, although I realize it could take longer. If I see more improvement, I'll keep going. The prescription version is called Metanx, and it is dispensed thru a particular pharmacy that your doctor can prescribe to (mail order). They do offer a money-back guarantee, for what that's worth. For me, the jury is still out on whether it works or not and I can't say for sure it's helping or not at this point 3 months in, but I'm willing to give it a long enough try to see what happens. I'll post back if good things happen over time. I think I'm going to take this stuff for at least 9 months and then re-evaluate. Nerve regeneration/repair is apparently not a quick process. I really hope the vitamin mix helps because I really hate how my feet and toes feel.
I'll add that I've finally come to terms with compliance with a gluten-free life, but it sure took long enough. I've been a really dummy about it, but I'm finally gluten-free for life now and doing fine with it. No more denial.
I have also come to realize I have major issues with corn. I always knew it upset me and was careful with it, but now it's really a problem and I'm avoiding it as well as gluten. In fact, I have issues with pretty much all grains. I get away with occasional brown rice, but don't eat much and I eat it quite rarely. But all other grains are problematic, as are the gluten free baked goods because those also contain problematic starches and other grains to make them taste good. Corn and tapioca starch (in so many gluten-free foods) really upset me almost as much as gluten.
My mom, as it turns out, has two celiac genes. She probably had mild evidence of it from childhood (she remembers health issues, but nothing horrible). At 46 (this was 1968!!) she had to have a hysterectomy...and that triggered her full blown celiac. Over nearly 2 years no doctor could figure her problems out....they mostly told her it was "in her head." She nearly died....when she was finally diganosed by a doctor who actually knew a bit about celiac disease, she weighed 89 pounds and the villi in her intestine were gone. There were no gluten free foods in the 1960's, so she had to eat pretty simply. Her condition healed within a year, her villi regenerated within about 8 months, and she regained her lost weight. She has been scrupulously gluten-free ever since, although any cross contamination makes her violently sick. Mostly she can't eat out because she is so reactive. AND....she is about to turn 92 and is in otherwise great health!
I spent my first 55 years thinking I had serious tolerance issues with dairy. Although my mom had been diagnosed with celiac disease 40 years ago (she nearly died from malnutrition before a bright doctor recognized and diagnosed her), my symptoms were not like hers so I didn't think I had celiac disease. When I got sick myself (still somewhat different set of symptoms from my mom, and I did not lose weight) and finally realized I also had celiac disease, I went both gluten and dairy free for maybe 6 or 8 months. (Enterolab's testing showed I was casein sensitive, and they recommended that I NOT eat dairy and also stated it could also damage my intestines....I don't know how true that is or not). So after this amount of time, I re-introduced dairy in a limited way and found it no longer bothered me in the same way as before. It seemed that a bit here and there wasn't a problem (whereas previously, any amount of dairy upset me horribly). Over time, I learned that more than a little dairy still caused problems. A bit of hard cheese didn't seem problematic, a bit of cream or half and half didn't bother me, but yogurt, cottage cheese, and dairy on a daily basis still gave me issues. Dairy also bloats me up. So in the end, I really minimize it, and I've done well enough with this for several years now.
We went to Olive Garden last night. They had a limited gluten-free menu including a pasta sauce on rice noodles, but other than that mostly grilled steak, chicken, salmon and veggies. I got a mixed grill (chicken and steak) plus veggies which were asparagus and summer squash. It was really good! Of course, their menu had the usual disclaimer that they couldn't guarantee everything was 100% gluten-free with no cross-contamination.
This really is important for all of us. I had a comprehensive bone density test at age 49 and they said I had osteopenia at that time. I didn't realize I had celiac disease until about 6 years later and realized the connection between the two. This is another argument for earlier testing, before bone loss can occur.
Let me give you a very reassuring reply. My mom was very very ill and nearly died from undiagnosed celiac disease when she was about 46. At her time of diagnosis she weighed 85 pounds or so and her intestinal walls were smooth as a billiard ball, no villi left, and even her stomach was a mess. So she went gluten free, carefully so because with even the slightest bit of contamination she gets terribly sick. She never had ANY further health issues, has always been totally healthy. Next week she turns 90!!! And no one thinks she is 90, she looks great, her mind is 100% like always, and she has no health issues at all.
The key is to remain 100% gluten free, even if you don't get as obviously sick as my mom does. Your gut damage will heal. Even as bad off as my mom was, on a gluten free diet she healed pretty quickly. She had a second endoscopy after about 6 months gluten free, and most of her villi had regenerated and despite how very sick she had been, she quickly got over all that and gained back the necessary weight.
I've read a lot of things lately suggesting that the oat protein is problematic for celiacs more than some people are trying to make us believe. I love oatmeal and tried various gluten free versions, but I did have problems, and especially if I had oatmeal several days running. Not as bad as gluten, but they definitely bothered me.
Can anyone explain more about the above? Celiac disease runs thru my family. My mom has double celiac genes. Many in my family got tested via Enterolab. We want to find out what my father's 2nd gene was (from my test we know one of them...DQ1 0604, which is a gluten sensitivity related gene), and my sister got a gene test thru Kaiser, which would hopefully reveal what our dad's 2nd gene was. She said the results related to her by Kaiser were stated this:
I am in DQ2
Both of these could have come from mom too I was told! 40% of people with this profile are prone to celiac.
Our mom got tested at Enterolab, where she learned she has DQ2 0201 + 0201 (two identical celiac genes, one from her mother, the other from her father). I can't figure out how this relates to my sister's oddly stated gene results mentioned above. Her statement that both of these could have come from our mom...that doesn't make sense to me as one is from the father and one from the mother. Through our mom's testing,, we KNOW all the kids got one of the 0201 genes. Since our mom has double identical genes, how could one or the other have come from her, having two identical genes she has only one possibility to give to us all. And which of those above genes equate to our mom's DQ2 0201 gene? Is this result saying our Dad's 2nd gene was also a DQ2 celiac gene, just a different type than our mom's?
It's really quite amazing how many people (who have no "issues" or at least who think they don't) are totally insensitive and uncomprehending and unempathetic about it. Forty years ago when my mom was so sick and as yet undiagnosed (because so few doctors knew anything about celiac disease), she had a whole string of doctors who told her it was in her head. As for other people in her life, they were of course totally ignorant about celiac disease and its effects, so they often seemed to think my mom was overacting about it all...."Can't you eat just a little bit of gluten?" She should have invited such people into the bathroom with her as she threw up for hours and of course the D that went with it all.
I think you just have to accept and understand that this is how people often are, and how they often don't take this seriously. Nothing you can do about all this, either, but learn to not let it bother you!
A few comments on my experience. I was very sick by late 2005, at which time I was 56. Things were heading towards a crisis level, and as I researched symptoms I was led here and other celiac related places. Despite having a mother who nearly died in her mid 40's from undiagnosed celiac disease (she was down to 85 lbs, couldn't keep anything down, and this was the mid 1960's and doctors were almost totally ignorant about celiac disease. They knew about tropical sprue and kept asking her if she had been in the tropics!!). After her diagnosis, being gluten free (very hard at that point in time) healed her fairly quickly. The told her that her villi were nearly destroyed (hence the weight loss) and her intestines looked smooth as a billiard ball! After 6 months gluten free she had a repeat biopsy and she was mostly healed. She is now about to turn 90 and she's unbelievably healthy...as long as she doesn't get a smidgen of gluten. She DOES get glutened periodically, always something imperceptible, and she gets unbelievably sick due to her extreme sensitivity.
On to me....since my symptoms were varied but not like my mom's, I always figured I couldn't possibly have celiac disease. Rather, I knew I had big issues with dairy and figured that was the source of most of my problems. I ate minimal dairy, but for some reason, I also didn't eat all that much gluten, either. But I had serious digestive issues my whole life, from infancy onwards. It was mostly just a fact of life....until late 2005 when I reached a critical point where I was sick so much and felt like virtually ALL foods didn't agree with me. I had rather a lot of acute symptoms that were getting worse (won't detail them here), but that's when my search began. I got a celiac panel blood test, although from what I've read over the years, it's possible it wasn't the full group of tests needed. My GP was pretty clueless about what to order, and even the blood lab called up to ask the dr. what exactly she was ordering. I think she ordered one or two things, but not all of them. It came back negative, which I have since learned isn't definitive anyway. A positive blood test tells you something definite. A negative test isn't so solid...you still might have celiac disease even with a negative blood test.
Not having the endless $$$ to pursue all this thru my insurance, who given the negative blood test wouldn't pay for anything further, I learned about Enterolab. It seemed like an interesting thing, so I ordered the gene test, all the stool tests, and a casein test (plus soy and some other things). My gene test came back with a definite celiac gene (0201) and a second gene that was identified as related to gluten sensitivity. I realized the presence of that celiac gene only told me I had a predisposition, nothing more than that. And the other tests revealed definite reactivity, but again, I knew they were NOT a diagnosis of any kind. My casein test also showed a sensitivity.
I went gluten free and my symptoms disappeared one by one. After about 6 months I felt like a different person. I was pretty good for a long time, but have had various bouts of non-compliance and I learned that if I am eating gluten somewhat regularly, after a couple of weeks (aside from various digestive issues which show up early), I was starting to get something new: severe arthritis type pain in my hands, wrists, fingers. Stopping gluten made it go away after about a month or two gluten free. I've done this a few times, and the connection is very clear.
Dr. Fine: I was/still am a bit bothered that he hasn't published his supposed research. His stool testing method is controversial in some circles (especially among those less knowledgeable who want to stick to the decades old methods of diagnosis). I do know that medical people who work "outside the traditional box" are very frequently shut out of the big medical publications. Still, he has a lot of data from all his years of Enterolab testing. I was never contacted after my tests to inquire about my results, if any, of eating gluten free. I was initially surprised at that, and I still don't understand it. It seems like if he were really doing research/studies to later be published, wouldn't he want to use this big data base of testers who passed thru Enterolab?
All this said, Dr. Peter Green, one of the biggest names in U.S. celiac knowledge, in his very well known book "Celiac Disease: A Hidden Epidemic" mentioned the Enterolab method of testing in a positive way. I have also seen it mentioned by a variety of others.
A few years ago Dr. Fine was featured speaker at a local celiac group meeting. I was extremely impressed with what he said and with him in general. He knows his stuff, and I had the opportunity to ask him some questions and was generally pleased with his answers. He most certainly did not come across as a quack or anything, although I will say he's a quirky kind of guy who appears to be interested in a lot of things, including his music.
My mom out of curiosity got herself gene tested, and found out she is a double celiac, two copies of the same gene. This may account for why she is so sensitive. We never knew my grandmother had a gene, but she died at 99 so it didn't kill her. She did have severe arthritis, though, and who knows what else that she just didn't discuss. She was always very thin. After my test, I tested my two kids and they both got my celiac gene. Since my mom had two identical genes, me and my 3 siblings all automatically knew we had at least the one gene. My brother tested his two kids and they both also had the same celiac gene, and surprise, my nephew had 2 celiac genes (different ones), so he got one from his mom. She had no idea, but given some of her health issues, it's not surprising to me!
Well, long long post, but I really do find Enterolab useful and I'm grateful for the information I was able to get from them. I fully realize it's not a solid celiac diagnosis, but the gene test tells me my predisposition, and I know how I feel when I eat and don't eat gluten. Day and night. Whether you have celiac disease or it's just gluten sensitivity, the "cure" is the same: you don't eat gluten either way. If being gluten free changes your health for the better, isn't what you do obvious?
I guess my only complaint in NOT knowing "for sure" is that there are times here and there where I can indulge in sporadic gluten eating and I get no noticeable reaction. Other times I will react. Of course, if I have celiac disease I shouldn't eat any gluten ever, but not knowing, I guess I push the envelope sometimes.
Enterolab testing was useful for me because I had minimized gluten to the extent that I couldn't/wouldn't get anything definitive on a traditional blood test. What the Enterolab testing told me was this: that I had a celiac gene and a gluten sensitivity gene, that my tests showed reactivity, that I am casein sensitive, and that no sensitivity showed up for soy or corn. None of this was a firm diagnosis of celiac disease or anything else. Given that my mom has celiac disease in the most severe way possible and given that I've had a lifetime of digestive problems, what Enterolab did for me was encourage me to pay attention to the possibility that I might have it and that I was most certainly predisposed to it.
So I experimented a lot with diet and learned that I'm better off without gluten, without dairy, without legumes of any kind, without starches and without sugar. A big list, but now I know how to eat to feel good. Perhaps all the sensitivities I have are somehow related to gluten. Or not.
Although my food issues were largely digestive my whole life, my reactions have morphed into arthritis type symptoms in my hands, fingers, wrist. This occurs if I eat gluten, and goes away when I don't eat it. The connection is obvious and glaring and I can't ignore it. The digestive issues still occur, but the fact is, unless I want to heavily eat gluten for rather a long time to create intestinal damage and thus get a firm diagnosis, I'm stuck with the knowledge I have at this point. I see no reason to ignore what I've learned about how I should eat. Whether or not I **had** active celiac disease at one point is immaterial. What I know is that IF I EAT gluten, I COULD get celiac disease and all that comes with that diagnosis. And what I know without a doubt is that gluten and certain other foods make me feel horrible. AND....I most certainly do not need a usually somewhat clueless doctor to officially proclaim that I have celiac disease. Fact is, if my test were negative and I were told to go ahead and eat gluten etc., I absolutely know how I would feel and I don't want to feel that way any more. So there! Therefore, I eat how I should eat, and it has paid off all around.
I don't want to risk getting active celiac disease, I feel fabulous when I eat gluten free and also don't eat the other things listed above except very rarely, and that's that. So this is the overall value of Enterolab, in my opinion. I'm grateful to Enterolab for providing me with useful information I was unable to get otherwise and a starting point for action, and therefore it helped me figure out a good way to eat to preserve my health from that point onwards.
I absolutely believe your symptoms CAN vary. Mine certainly have! I think possibly the variety of symptoms I experience have something to do with the nature of the food I eat, things in combination, and it's not strictly due to gluten, but rather gluten AND other things I'm sensitive to. I can get gas, or the big D, or heartburn, or joint pain, or sometimes a horrible facial rash, or quite often mouth sores within an hour or two (or sooner). It's all over the board with me, and not usually the same two times running.
On the other hand, my mom, who has the most severe reactions possible to gluten, she gets violent ill within a half hour of accidentally getting any gluten at all, no matter who small the amount may be. I'm glad I don't react like she does!
I also had trouble with the "Think Thin" bars. In fact, I have trouble with ALL bars so I no longer eat them. As for your calories/weight loss, this was also the case for me. I really can't eat as much as I used to, and even 1600/day is too much for me.
In addition, through the 5 years since realizing I had gluten issues, I have learned that the list of what I cannot eat is rather long: none of the grains, NONE. No corn, no rice, no alternate grains, none of that. All bloating, all upset me to varying degrees. I learned that none of the gluten free goodies agreed with me, mainly due to extremely high sugar content and various alternate grains. I don't eat starches or any of the nightshades. I have serious issues with insulin responses, and that means I have trouble with fruit, sugar of course, and it goes on and on. Bit by bit I've learned what does and does not agree with me, eliminated (mostly) those things that don't agree with me or at least, I eat them very rarely. As a result of this and also watching calories, I've lost 20 lbs. since March 1. It comes off very slowly, but it comes off.