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
InterestsReading about celiac disease, autism spectrum, raw foods. I used to love to garden but my bones groan, so I have a few weeds. I enjoyed rubberstamping/scrapbooking but also have let that fall to the wayside because of depression/fatigue.
P.S. I also found these re: ankylosing spondylitis http://bit.ly/cpGzsG (& from google search http://bit.ly/da6IQn ): http://ard.bmj.com/content/56/3/180.abstract , http://www.kickas.org/medical/as9/index.html.
...and come to think of it, re the friend I spoke about earlier? She has severe bone problems, the nature of which (dx) I couldn't really comment; just to say she had multiple surgeries to correct her legs/feet when she was a child; and she currently complains of lower back pain. Conjecture at this point. (I don't seem to know how to post yet, forgive me.)
I see this is an old thread, but I googled for info re: same subject and then found this link, so I thought I'd add it in case it might steer someone else (and you):
http://www.clinchem.org/cgi/reprint/42/7/1064.pdf . My neighbor had high IGA on her negative celiac panel (hence my googling around) and she has blood sugar issues, likely gastroparesis (she is not heavy, but does seize when eating too much fruit - she also likes her desserts, but I've only heard her say her gut seizes with fruit). I know her A1C was 5.4 on same lab; I don't know if she tests her blood sugars. She might be hypoglycemic as I've heard her wonder aloud.
Also, I agree with Ursa Major re: dairy. Dairy, grains and meat are acidic. To gain bone strength one should eat more alkaline foods: GREENS, veggies and fruit. I'm not saying to discontinue any food, to just eat double or more of the alkaline.
I just wanted to add what I'd recently transcribed from a tv health show I watch. I'm very confused about gluten being in MSG - I've read it is and it isn't. Either way, it doesn't sound very healthy. I thought anyone reading about MSG might be able to use this to further their research:
Your Health with Dr. Richard and Cindy Becker (viewed on KSBI-TV Ch. 52, OKC on Tuesday, July 10, 2007)
Hello all. I don't post very often, but I'm always reading. Today I was trying to find info regarding Spirulina and somehow I got linked to this MSG (which also interests me) thread. I know it has been a while since the last post, but for someone else, I hope this might add to the conversation:
"Your Health" is a show produced by the good doctor, Dr. Becker from TX. www.bioinnovations.net He has special guests about natural ways to support our bodies. He's a lymphoma cancer survivor. He loves Noni juice, oregano oil and supplements to add to our whole food diets (which includes whole grains ), but anyway, from my celiac diagnosis was born a love of reading about celiac, which has turned into learning about absorbing nutrients/nutrition and his show is worthy of my time. I'm a fatty celiac - need to lose a lot of weight - and find that any flours are not my friends at this time. I'm having a hard time giving up my dairy (cheese & Yoplait cherry addiction). You know what they say: if you love it, you're probably allergic to it. Here's the exerpt I typed from the show for my blog: Actually, it's very long. I'm just going to give you my blog address to read it, if that's okay. The blog date entry is: Monday, July 23, 2007. Please let me know if you find any discrepancies and I will certainly rectify the error.
or check out http://www.RussellBlaylockMD.com - he has a book about nutrition and wellness.
Hawkfire: I had dementia with celiac - and I swear it's got to be related to Alzheimer's disease. What's the difference? My FIL I'm sure had undiagnosed celiac when he died 2 yrs ago from non-Hodgkin's lymphoma. He had my same celiac symptoms: hypothyroid, pernicious anemia (I'm just B12 deficient as of right now), depression, eczema. He lost a lot of weight and they couldn't find out what was wrong with him (sound familiar?) before finally finding the cancer. He was 72 and a recovered alcoholic (I'm not alcoholic, I don't touch the stuff, but that's because my FATHER was alcoholic -- see the connection?). Anyway, his mother died with Alzheimer's (I can't recall exact COD). Her mother died from "anemia."
Support your gut/support your immune system: http://www.bodyecology.com
Okay, so get this. I move to a smaller town outside DC and get asked to be a receptionist at my DD's new orthodontist's office. I just moved, I'm stressed, but we're outside DC and it's expensive, so I take a leap of faith and leave boxes unpacked and go for it. I work there for a year - and I'm so stressed. I complain of aches and pains and hair loss. I have headaches, 'm depressed & have anxiety that makes me want a rubber room. I can't remember anything as simple as what I ate for lunch, let alone a new appt. program- yet I'm a happy person who everyone loves to be around - and crash at night ... and can't sleep of course. I've been clenching my teeth. I've learned this to be bruxism. TMJ involves more gnashing and scraping. Both are not healthy. So before I move again, I ask him to look at me (embarrassed cause I have a mouthful of fillings and it looks like I never brushed or something). Doc is VERY cool, and insists he make me a night guard for free! (See, he loved me!) I asked him about over-the-counter football ones - and of course he says they're not helping the jawbone - just the teeth. It's important to protect the jaw alignment. Your jaw continually changes as you age. More on that later. It helps my headaches. I feel proactive and I'm grateful.
Now we're moving again and I'm still so tired. My thyroid's off, but after upped dose of Synthroid, I'm still tired and tell new doc. He does full iron panel and serum ferritin is so low he forwards me to GI doc for colonscopy to check for internal bleeding/cancer. I google anemia and I ask the GI for an endoscopy not knowing I'm getting my celiac dx, right? I'm still wearing my guard at night btw. Six months into the gluten-free diet, so much has changed regarding my health I can't believe it - one thing that changed was sleeping through the night again; and I can't remember the last time in 18 yrs or before pregnancy. This is, I believe, a result of Vit D Rx (50,000iu 1x/day for 8 days and 1x/month for yr) and getting sunshine. My other labs weren't as responsive. Prior to my diagnosis, I sometimes felt aching in my teeth - esp, and this may sound strange, if my nasal passages were clear and I'd breath in cold air. It radiated. I asked my dentist about it and he didn't know what to make of it. I had/have sensitive teeth. I've cracked them on hard candy. Why wouldn't a dentist tell a patient to get their calcium or Vit D checked if this happened repeatedly? It seems so obvious now.
Anyway, my need for the nightguard vanished. I don't clench anymore since on 100% strict gluten-free diet. And when I put my nightguard in after not wearing it for a long time, I can totally tell my jaw alignment HAS changed (on a side note: my DH's front teeth are spreading apart as he ages!). So I really should wear it anyway! (Ortho would kill me if he knew!) Ask an orthodontist for a free consult and see what he/she has to say; do comparison shopping. Ask for payment plans; I believe it's worth it.
I read the article and was kinda taken aback at what could be misconsrued given the lack of information.
Here's my story: After my thryoid was dx hypo 11 yrs ago, somehow I found someone who gave me a book (because we were researching how to help our "not quite right" kids, The 20-Day Rejuvenation Diet by Jeffrey Bland, PhD. I learned about transfats, free radicals, wheat and sugar: so I went wheat and sugar free and started walking an hour a day. I lost 20 lbs in a month. I'm obese btw. I pretty much was gluten-free as I had no idea about baking with alternate flours and could only find rice crackers at Costco (thank goodness). But doing that diet alone was tough (nobody I knew ate this way), we moved to AK, I stressed and went back to eating "normal." Fastforward 10-11 years through multiple and worsening health issues and I get the celiac dx. What a missed opportunity for me to have been diagnosed! I KNOW I've had this my entire life ... and I did not have GI pains ...
And after dx, I gained 20 lbs. before stopping and really looking at what I was eating (a lot of yogurt?) and turned to veggies/fruit and lean proteins and tons of exercise to LOSE weight. As I was not 100% healed yet, I found this extremely difficult! I did not eat a ton of gluten-free alternate foods either.
I hope people visit celiac.com to learn more, is all I can say.
(My DD is a mini-me pre-dx: tired all the time, etc. (thyroid is fine). I have her blood tested and biopsied: negative. I test her via enterolab: positive to gluten, casein, soy and 2 genes for celiac.
Here's a question I haven't seen much about: when I talked to her pediatric gastroenterologist (she had the test at age 17), I asked him if she should go gluten-free anyway. He said no: that if someone goes gluten-free who doesn't need to, and then eats gluten, that person could have anaplylactic shock. Anybody know about this?
I love this topic as I've been thinking about raw (but not doing much about it) for a few months now. I was a fat vegetarian for years and years. I was a Kashi queen for 13 of those. My gluten went to my gut, hips and thighs and arms and and and head! I was in a fog for most of my life. Not so much GI pains; just constipation (which I didn't think was bad enough to mention to my doctor ... think that matters anyway?)
I can't help but think that vegetarians and vegans might be innate in trying to help themselves; only in the wrong places ... I didn't give up meat for ethical reasons; I just didn't care for the fat, so I stayed away. I never heard of someone giving up bread ... wish I'd known about all gluten had to "offer!"
So since dx I've been reading my brains out about nutrition. (I went to a nutritionist to help me with my issues and I was her first celiac ). I now know that I was protein deficient for sure. The beans and rice helped me maintain or gain. All the whole grains kept me hungry. I know that I lose weight eating grain free or really low nongluten grains and, veggies/some fruit. Soy's no good cause celiac wrecked my thyroid. It's quite a change; whereas I would wait too long between meals if I ate at all (depression), now I have to stop and graze, which with my ADD personality is hard for me to do. I'm not a planner, which is detrimental to the dieting. I'm bored and stressed out thinking about food all the time. I've been reborn since going gluten-free and I haven't the foggiest what to do with my new life!
I really appreciate everything written about this here ... I helps me continue to incorporate more veggies in my diet. I will check out that vegiac site too. Cool beans
My Baskin-Robbins does not know a thing about gluten. Their ice-cream is full of it; except vanilla maybe? I don't remember the only option I had because I declined, and went to the grocery store for Hagen-Daz strawberry instead. It's a NYC thing to get such luxuries?
Hineini - GREAT info. I'm going to take some time to read all your links to be well-informed. Thanks so much for all your time to explain.
Jenvan - thanks for your input/sharing also. I'll keep reading your posts to learn.
I'm having a burning sensation in my left shoulder ... am I on a witch hunt?! (I swear I am my mother reincarnated in a more outgoing shell! -- she has many of these symptoms, but doesn't research anything; only lives with pain and misery and complains. I feel bad for her really.) Anyway, I really don't want anything else wrong with me ... I used to tell my husband in our early years to "think it away" -- like a cold or what have you. Used to "p" him off! We laugh now and bring it up to be funny. Well, I want to think away all this! Esp the extra weight which can't be helping!
Hi Everyone. I'm wondering what your symptoms are like for FMS? What are tender points? How hard do you have to press? How do you tell a sore "tissue" from a sore "muscle"? Can I do it to myself? I was dx celiac disease Feb 1 and have been gluten-free since. My depression has lifted quite a bit-the world has colors and I want to fix up my house again. How do you tell the difference between depression, hypothyroidism, and FMS symptoms? Doesn't depression hurt?
Also, I think I have been glutened only once. My only "tell" was a sharp pain in my gut below my stomach which lasted about 5 hours. Is that familiar? Pre-dx I was too "dull" to tell ANYTHING about myself; I wasn't constipated anymore, but no diarrhea either. Just going into the "stat" stool phase with bad gas, and quietly suffering with the rest of my ailments, thinking I was just getting old .
Anyway, back to FMS: I garden - well, pull weeds a lot, and it ALWAYS takes me a long time to recuperate just from that. I'm so sore! I got a personal trainer last year and I never felt like my muscles recovered (this was pre-celiac disease dx). I don't know what to expect anymore. The trainer couldn't answer my question. The doc hasn't answered it. I'm looking for anecdotal reports now! Well, now I'm up to walking 1-1/2 mi daily - but then I sit at the computer all day. Sore hip joints. But muscles still seem achey and sore; both legs/arms. I am 125+ lbs overweight. I used to be a cheerleader and limber and active ...
Sometimes I ache a bit at night. My RLS has subsided since going gluten free (it was really bad pre-dx). But your posts about your aches make me wonder if I have FMS. I also have trouble with my left hip sciatic nerve from sitting and planting pots on the driveway for hours 13 years ago. My doc said he knows a lot of people who get that injury from sitting on bleachers at kid's games. I had an MRI on Thursday and am awaiting the doc's call re results.
Also, I love it when people write their bios at the end of their posts. It really helps me understand others' experiences. Am I just nuts (my B-12 is low ) to write so much? Someone tell me to edit or something. I'm feeling "out there!"
Is anyone doing their own science experiment with their kid re: diet? Like, should we expect that person to be ailment free by the time they grow up (bar virus's and such) from being a vegetarian or gluten-free, or whatever else (lectins, etc)? Has anyone read any of Marilu Henner's books, or seen her show on Fit TV? She's very interesting; you'd think she'd have a lot of connections, and she looks amazing. I wonder how her kids are?
Hi Y'all. I think my celiac was pretty quiet as a kid, burped (not literally!) a bit as a teen (fatigue) and blew up during my pregnancy 18 years ago. I've never been the same. No gi symptoms either except constipation until about 4 years ago. See my life story below. BTW: I learn so much from others' life stories and experiences; it goes to show how different we all are (and yet the same)! I've diagnosed one person, not related, so far ... so one down, and ?? more to go?!
Anyway, I wanted to note what Danna Korn wrote in her book Living Gluten-Free for Dummies re: reducing the chance your baby develops celiac disease:
"New studies show that you may be able to protect a baby from developing celiac disease later in life. Univ. of CO scientists have pulished info indicating that exposing babies to gluten in the first three months of a baby's life increases the risk of celiac disease fivefold. Their studies indicate that waiting until the baby is a least six months old decreases the risk but that waiting beyond seven months increases the risk again. In other words, the best time to introduce gluten, according to this study, is between four and six months.
Another factor that seems to have an effect on the development of celiac disease is breastfeeding. Studies show that breastfeeding longer than three months may delay the onset of celiac symptoms and decrease the risk of developing celiac disease. Gradual introduction of gluten-containing foods and continuing to breastfeed while those foods are introduced seem to reduce the risk of developing celiac disease, as well."
I've had cracked heels for too many years. Sometimes they'll bleed in the cracks if I don't scrape/grate them at least once a week. More is better and makes it easier the next "grating". It's a bother to notice every step you take when you have cracked heels! We have gluten free food to prepare and important celiac-related info to read on the computer ...
I found a great scraper/"grater" at the beauty supply store and it came with two grate sizes: one to get the really hard stuff off, and another, finer one to help smooth. I've also found scrapers at the Dollar Store, which I used while on vacation in Vegas - sandals are a must in the summer! I just make sure to lotion really well after showering while my feet are damp, during the summer. In the winter I use the vaseline and socks routine occasionally since I pretty much wear socks and tennies.
I was dx hypothyroid 1996. Dx celiac disease Feb 06. I always thought it was because I needed to lose weight - not enough circulation? My mom is pre-diabetic (I'm not) and hers are not as bad as mine. She needs to lose maybe 50 lbs, I need to lose over 100.
I have a tendency toward having exzema flairs- more on my hands and arms when really bad (stress during college and after pregnancy). That was 18 years ago. Currently, I only experience winter exzema on my hands occasionally because of dry heat and not investing in a humidifier ... I keep meaning to try that. It's supposed to be good for your lungs as well. Anyway, I'm gluten free only 7 months - my heels are the same. My heels didn't change when my thyroid was out of or in range. I will look into athlete's foot.
Since going gluten free I've added MORE ground flax seed to my diet (and I make my Good Season's Italian dressing with flax oil and have salad daily with it). I haven't noticed a difference in my heels.
BTW, my MCV and MCH have always been within range. However, my RDW has been over range for many of the 10 or so years I have records. I just asked my dr about the consistency of the RDWs for me, and he says many of these tests depend on other parts of blood test results, so you often don't need to worry about it. I was driving myself crazy self-dxing while reading those websites (labsonline). Many celiacs, incl myself, don't trust drs because our symptoms were ignored, so I can't help but want to be informed. Just talk to the doc next visit. I compile lists!
My docs only clue that I might have had celiac disease were "low, but within range" hemoglobin for years. I was soo tired. Weight related? I worked through that with a personal trainer and lost 40 lbs., but also started losing hair and my exzema flaired (we were moving, it was winter, so I thought it was stress). Well, my body WAS stressed! I had undx celiac disease! Doc said hair loss could be thyroid related, but it was within range. He was right, but .... Different rant. Sorry
Has anyone had an ESR (Westergren) for inflammation? I had that test one month after celiac disease dx (37, and over 20 is flagged). Dr said probably because of inflammation in my intestine? I also have a hip problem for 13 years: think it could also maybe inflammed sciatic/muscle in my hip? I digress. (This same time my MCH was below range/low).
Here's a wonder: my B12 was tested for the first time after dx in Feb. First test was 326 and second test after going gluten-free was 382 (July). That's great, but here's what the lab report noted after the result:
"Although the reference range for vitamin B12 is 200-1100 pg/ml. It has been reported that between 5 and 10% of patients with values between 200 and 400 pg/ml may experience neuropsychiatric and hematologic abnormalities due to occult B12 deficiency; less than 1% of patients with values above 400 pg/ml will have symptoms."
WHAT DOES THAT MEAN?! I think it WOULD be a good idea to start a new thread with questions regarding interpretation of blood labs!
Okay, I'm done.
Hi Everybody! This is my first post; wanted to share my RLS story. As a child I remember having aching legs A LOT. I also used to sleep walk (don't know how that fits in, but I'm throwing it in anyway). My mom would call my aches "growing pains" so I just thought I was growing! It hurt and was obnoxious! BTW-I'm only 5'2"!
I continued to have those "aches" and the older I got, the more I had that and "restless legs" - by this January, pre-CDdx, I was going out of my mind trying to watch tv with wiggly legs-RLS. It got so bad I even wrote it in on the gastro's symptom sheet under "other symptoms" BEFORE I knew about connection with nutrition! I noticed the aches at night mostly, and not so much RLS (maybe they're related-probably same thing but w/varying degrees?). I used to treat such nights with ibuprofen, and the pain subsided enough so I could sorta sleep-you know how that goes.
Well, I've been gluten-free for about 7 months now, and no more RLS. I still have some mild mild aches. What a relief. I wasn't always bothered by it in my sleep, but I never slept much pre-dx either. I'm not much of a snorer (but did snore when I was pregnant). Don't know about sleep apnea; but don't think I have that. (You never know though, do you? I've learned that much!) I'm 125 lbs overweight - and gaining since gluten-free diet. But that's a different rant!
I've been hypothyroid 13 yrs now. I know I was borderline anemic for at least 10 years, documented, prior to celiac disease dx. "Take iron!" the doc would say. I did and, "nothing" changed. So I'd quit cause of the constipation. I was constipated enough without any help!
My hemoglobin was always "borderline low" but not lower than the ref. range. I never brought up my RLS at an appt either though. I never thought about it. I was mostly there for my other stuff: thyroid, skin tags, subcutaneous zit thing (very medical term ), chronic fatigue, depression, edema and hip joint pain or whatever. Come to think of it, I didn't go to the doctor much until I got pregnant at 28 yrs. (and that's when I really started going downhill). Anyway, doc ordered an x-ray of my ankle, saw nothing, and it ended there. I wouldn't think you'd see much "tissue issue" with an x-ray for edema anyway. Somehow I thought since it was in the same left side, that the hip pain and the edema would be related. I've been 13 years with the hip pain and no answers. I have moved a lot, saw 7 different doctors for it.
Anyway, my latest move last Nov, I saw a doc for annual thyroid check to get new Rx. I told him I was soo tired. I'm fat, so he thinks I just need to lose weight? He did nothing. Now I'm not my best advocate, as I'm depressed and have brain fog to boot. Next appt in January I ask for iron test. He DID do a full iron panel with serum ferritin (which I'd never had before) - voila ...
...on to colonscopy (and I ask for endoscopy) and got my celiac disease dx! Thank goodness no cancer!
My calcium was 21 right after dx, now is 46. I don't know what my magnesium was. I just saw this same doc again this morn. for my hip pain because I want answers! He was more helpful cause I had my wits about me this appt! Tonight I go in for an MRI. He suspects my hip pain is not "bone or joint" related at all (which I thought it was because my vit D was a 21 (ref. range being 20-100 ng/mL) (and a different doc said I was osteopenic), but sciatic(a)/nerve-related. That may be, as sometimes I feel like I pinch it and almost fall to the floor in pain. If the MRI is inconclusive, then on to a different path. He said my edema is a low priority, maybe when I'm more active, it'll subside. When my hip pain subsides, I'll exercise! Prior experience makes me believe this - this pain was initiated by a too long a stint (2-4 hours) sitting on the driveway planting pots. I also used to sit and scrapbook a lot! Now I sit too much at this computer! He also said people get this from sitting on bleachers watching their kids' games a lot!
He said ibuprofen and some other meds will make you retain water also. (I was taken a lot of it for "anemia" headaches and the other aches ... but not so much now and I still have it ..) Anyway, this path will take me to learning more about nerve issues I think. What a Pandora's Box of medical knowledge I'm gaining! I had no idea how to take care of myself; I'm grateful to be aware enough do so now. And thanks also to forums like these where I can turn to for advise from quite a collective/combined experience!
Point is: more nutrition-less RLS for me. Sorry, if I jump around. I'm ADD too - and totally NOT hyper