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
So I never thought I was this sensitive to gluten. I knew that if i actually ate something with gluten, I would start getting the symptoms--headache, sometimes a bad stomach, most often neuropathy. I had been avoiding even stuff with wheat starch (like Pringles). Because I knew that would cause the same symptoms.
Then I went to Trader Joe's yesterday, to get some pizzas for the kids. I picked up a bag of tortilla chips--should be safe, right? And a container of spicy guacamole (which turned out to taste horrible, but that's beside the point).
A few hours after dinner, I had a horrible stomachache, the same kind of sleepiness I get when I've been glutened with a big dose of wheat, and a headache. I looked at the labels--"made on shared equipment." Now, I i had seen this, but before on Trader Joe's labels they make a point of saying that their providers take care to avoid cross-contamination. Not any more, it seems. It also seems my sensitivity is getting worse, not better. UGH.
Anybody else have trouble with trader joe's food? seems like even if they say it uses gluten free ingredients, everything is made on shared equipment. I'm going to have to go back to buying dedicated gluten free foods from dedicated facilities, and whole foods all the way, I guess.
I never assume others understand what celiac disease or gluten intolerance is. At our homeschooling group a few weeks ago, the kids were making cat and dog treats, and catnip pillows, for the local humane society. The mom in charge asked me to help the kids with the treats; I asked to see the recipe, and it called for flour. I told her I had celiac disease and shouldn't be near the flour, since wheat makes me sick. She said, "Oh, this is white flour, not wheat." I said, "if it's all-purpose flour, it's made of wheat." She said, "Really?!" Oh. My. Gosh. So I stationed myself at the catnip pillows table.
So I never assume a waitress will understand what I mean when I say, "I can't eat wheat." The waitress may have thought there's no way the soup had flour in it, and that as long as the croutons weren't on it, you were okay with it. Panera is such a bread-filled place, I don't eat there anymore because cross-contamination is so likely.
And about shampoos and lotions. For a looong time I thought i didn't need to worry about them. But I've had a bad rash on my forehead now for about two months, ever since I started using a new shampoo...and I just now read the label and it has wheat protein in it. I stopped using it, switched to a gluten-free shampoo and facial cleanser, and already my skin is getting better. It is possible for the wheat to irritate one's skin, or to cause an allergic reaction, if you have celiac. But it's not hard to find gluten-free products! Really. Dove will always list wheat, and Shikai makes nice shampoos and conditioners that are gluten free.
I am leery of Juice Plus. I went to a demonstration, with my kids, and i felt like I was being indoctrinated into a cult or something! I asked the distributor, how exactly do they dehydrate all these fruits and vegetables, with heat? Because wouldn't that cause vitamin and enzyme loss? She said, no, they didn't use heat. Well, then how? She paused, and you could tell she had NO freaking clue. She said, "It's a patented process of some kind." Okeydokey.
Since I have apple allergies, and most all of their products have apple I couldn't buy anything anyway, even if the oats weren't an issue.
I, too, used to think i didn't need to worry about my shampoos and other personal care products. But then I realized that I've had a scabby, red, painful rash on my forehead, right around my hairline, ever since I started using a JASON brand shampoo that has wheat protein. I didn't check the label, was just using it because it's sulfate-free (i avoid SLS), and that's when the rash started. I thought it was acne but acne treatment wasn't working at all.
Shikai shampoos and conditioners are gluten free. For soap, try Kiss My Face Olive Oil soap; it's only got three ingredients and is very pure. Neutrogena products are pretty much all gluten free; the manufacturer will provide a list.
I was one of those who thought I didn't have to worry if my shampoo or conditioner had gluten in it. I honestly did figure, "I don't get it in my mouth, so what's the big deal?"
Well, nearly two years into my gluten-free life, I developed a very annoying rash on my forehead. Red, spotty, with little flakes and "scabs". Painful, too. I thought it was acne--I've had this kind of rash before and was told by a dermatologist that it was acne--and I was treating it with a scrub cleanser and salicylic acid. It would wax and wane, get a little better, a little worse. I wondered if it was cycle-related, or food-related, tried cutting out sugar and dairy...nothing.
Then I finally got around to looking at my shampoo and conditioner. I avoid sulfates in my shampoo, so I had found JASON Biotin shampoo and conditioner at the grocery store. Lo and behold, there on the label was "wheat protein." I felt so stupid. And I realized that I had started using this shampoo a few months ago, which was around when my rash started to flare.
And I've realized since that because my hair is long, sometimes I fiddle with my hair, it gets near my mouth, and...duh.
Oh, and I realized my Garnier Fructis face scrub has oat amino acids...maybe that doesn't have gluten in it, maybe it does, but I'm going to play it safe.
Well, I confess here and now, as a former "personal products don't need to be gluten free" person, that I'm cleaning out all my personal care products and finding gluten free ones. So far I'm loving Shikai shampoo and conditioner, and if anybody has a recommendation for a gentle face cleanser, without sodium lauryl sulfate and gluten, I'd appreciate it. Right now I'm using an old bar of Kiss My Face Olive Oil soap. I also need to find a good face lotion.
For anyone who thinks it doesn't matter, because you've been using whatever you can find and you're not having problems...you never know. I thought I wasn't having any problems, but I'm hoping I found the cause of my rash. It's definitely not acne, because when I use the salicylic lotion on a breakout, it clears it up right away. But this rash hasn't gone away for months.
I've had dark circles all my life, my mother has them as well. (I suspect she has silent celiac; she has rheumatoid arthritis, and her mother died of colon cancer). My mother's have always been very bad, and until recently mine were bad. They are getting better; i can go without concealer under my eyes some days. But then i've only been gluten free a little over a year.
I went gluten free without a definitive diagnosis. My blood test--my GP would only do the EMA test, which can be negative in up to 20% of celiacs--came back negative, but I already knew that avoiding gluten was helping.
It came down to, what am I going to believe, my own body or a lab test done by strangers, prone to human error anyway?
Yeah. I was dumb; we were in the middle of nowhere with my in laws, stopped at KFC and what with the three kids we were ordering for and trying to get food for everyone, I just went ahead and had the grilled chicken.
I didn't seem to have any gluten issues. And it tasted great.
So without checking the website, I had some again on Tuesday for my birthday. And leftovers yesterday.
I am paying for it today, I think...of course, we have a stomach bug going around, so it's hard to say what exactly is causing my symptoms. But i feel like such an IDIOT.
Contrary to popular opinion, it is not uncommon for celiac patients or those with gluten intolerance to be gaining weight. If your intestines can't absorb nutrients (due to damage of the villi), then your body will react by holding onto calories, since it thinks it's starving. I never had the stereotypical thinness that is associated with celiac. But when I went gluten free, people started commenting that I had lost weight.
You're right, you need to stay on a gluten-filled diet in order to rule out false negatives.
I had a negative EMA test. It was the only test my doctor would agree to do . I read a paper once that stated about 20% of celiacs can be negative for EMA, they are referred to as "sero negative" celiacs. It could also be that the intestinal damage just isn't incredibly severe yet.
All I know is i had a VERY positive response to a gluten free diet. My psoriasis has improved dramatically, my brain fog and mood swings are gone/greatly reduced, and I'm no longer wanting to sleep in until 10 am like i used to. My poor husband would have to shake me awake in the mornings so I could tend to the kids and he could go to work! Now I wake up at a decent hour every morning, with energy to start off with.
My digestive system is much better--as I said to my husband, i didn't know it wasn't normal to have pain while going to the bathroom! Or to swing from constipation to diarrhea in the course of one day, or two days.
For me, at least, the gold standard is dietary response. If you have DH, by the way, a dermatologist can biopsy the rash and test for that. If it's DH, then you are celiac.
Long story short: when my third son was born, they did the typical newborn screenings, with a new test added recently in our state: Carnitine levels. Apparently a low level of carnitine can indicate an inborn error of metabolism. My son's level was extremely low, and immediately the assumption was that he had a metabolic disorder.
However, then they tested my carnitine levels, because this is a genetic thing and my brother died at age 30 from unknown causes; they thought it might be a metabolic issue. My levels were as low as you can get. The doctor said he'd never seen anybody 'walking around' with such low levels.
They tested me for the carnitine transport error, and I didn't have it. They had no explanation for my low carnitine levels. I ended up going to another doctor, a pedatrician with expertise in metabolic disorders. She reviewed my history and said it was possible that my carnitine levels were so low because, prior to my third pregnancy, I had been eating a vegan diet. She said that my son's levels were most likely low because I had no carnitine in my own system (babies in utero get carnitine from their mothers, after birth they metabolize it or absorb it on their own).
My son is still on a low dose of carnitine supplement. He was tested and had a low normal, then got tested again after an illness, and his levels had dipped down (during illness, when children don't eat, they use carnitine to metabolize stored fats, so I wasn't surprised that he was low on carnitine). I went gluten free last August, and my levels have been normal; now I've been doing some reading and finding that in the few studies that have been done regarding serum carnitine levels and celiac disease, patients with celiac--especially children---have low serum carnitine.
I tested negative for celiac with an EMA test, but have had extremely positive response to the gluten free diet. Is it possible that celiac was causing my carnitine deficiency?
Yep, i've been gluten free for nearly a year, but only recently dairy free. I noticed that my sense of smell has suddenly gotten keener. And foods are more flavorful. Things like pineapple are almost TOO sweet or flavorful.
I used to get a headache whenever I drank coffee with cream. I tried soy creamer, still had the same effect. It was a headache right above my nose, between my eyes, and very annoying. Felt like a sinus headache.
So I switched to black tea, and my allergies got worse. Then I learned that mold can be present in black teas.
Now i drink iced coffee with rice milk, and have no headaches. I think it was the dairy and soy that was bothering me, personally.
A lot of this is detective work, and everybody's body is different! I know I loooove my iced coffee in the morning. I only drink it then, if I have any past noon then i know i'll have difficulty sleeping.