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, we've been doing SCD for almost two weeks now. I can't believe how much harder it is to do SCD than just doing gluten free. Corn is in EVERYTHING! We went to buy a roasted chicken at Cosco the other day -- one of our gluten-free staples when we are short on time -- and it's seasoned with sugar and corn starch! gluten-free salad dressing with sugar! Turkey breast with corn starch, even my taco seasoning with sugar and corn starch.
But, we are learning. I made the homemade yogurt, and we've been using it to make lactose-free ice cream in the ice cream maker, sweetened with some honey. My son (the one who's not quite at "normal" levels) is taking salad for lunch every day instead of a sandwich with gluten-free bread. I've been baking with nut flour, so he has snacks to eat (so far, my husband and I are the ones eating the stuff!), he's been eating beans to try and stay full without the carbs from chips or gluten-free bread or whatever.
I admit that I do feel more rested in the morning. He also seems to wake up with a little more spring in his step (as much as a 13-year-old boy can). So, we are hanging in there, waiting to see if this will do him any good.
Mushroom - our sons' GI doc (2 of my kids have celiac) was on our case when both of their levels came back positivie after 5-6 months of going gluten free. Saying we weren't doing enough.
Now, I'll tell you, we completely -- and I mean completely -- changed our way of eating. We got new pots and pans, new toaster, new utensils, cutting board, cookie sheets, etc. Cleaned out the house completely of anything with gluten. The kids only take gluten-free food for school lunches, if we eat out it's rarely and always at a restaurant that does gluten-free.
So, we had to get them tested in October and one son had gone from 84 to 52 (he had originally started at 175). The older son had only gone from 126 at the 6-month check to 105 (ttg IgA). They made us see the nutritionist because they couldn't believe that he wasn't possibly not eating any gluten. She, of course, confirmed we were doing everything we were supposed to be doing.
Got my oldest son tested two months later by the Endocrinologist (actually didn't know he was getting a celiac test; the doc ordered it along with another test because we are trying to get him on growth stim meds since he has low growth and low to borderline normal growth hormones. Anyway, in those two months is when he went from 105 to 95. So, the levels are going down, which I was happy with. But, according to the GI doc, he should have been negative after only a few weeks.
Now, of course I know that is not true. And, I was actually surprised to get that reaction from the doc because she seems so reasonable and smart. We have to have him tested again in March. If he's still positive, they were going to make us do a no grain diet anyway. I'm just trying to beat them to the punch, hopefully see his levels REALLY drop, heal his intestines, and hopefully jump start some growth. At 13 years old, he's only 70 pounds. He'll be going into high school next year!
We haven't tried any probiotics, but I'm hoping the homemade yogurt for the SCD diet will help. I'm hoping it tastes good, too. He's OK with limiting the grains. He actually really likes meat, beans, etc. We are starting with the normal diet, not limiting fresh veggies, beans, honey, etc since he doesn't have GI issues (I mean like blood, diarrhea, etc). Hoping this will help him get better and then we can sort of start back on gluten-free complex grains, if only in moderation.
So, speaking of other intolerances, I too have found food intolerance since going gluten free. I couldn't eat eggs for a couple of months. And, I've found that tomatoes cause an allergic-type reaction, even though I'm not officially "allergic" (I had a food allergy test about a month before we found out about Celiac for me and my two sons). Tomatoes make my face itch a little bit, and I get really tired. I haven't found or noticed any food intolerances specifically for my oldest son, but I suspect the tomato thing with him, too. My other son now has a milk intolerance, so we've been going lactose free. Another good thing about the SCD diet.
So, we'll see how it goes. We've sort of been eating normal still, trying to use up some of the food. However, the grocery store let me return about $75 worth of gluten free stuff I bought (like Chex cereal, Betty Crocker Gluten free mixes, gluten-free pasta, etc). Used the money to invest in an ice cream maker to make ice cream out of our homemade yogurt. I figured it's a good way to get the kids to eat it.
The yogurt maker is arriving on Friday. I admit to being very scared about making my own yogurt.
I just bought BTVC, based on a post I read elsewhere on this forum. Last year, my oldest son was diagnosed with Celiac and, as a result, the rest of the family was tested, It turned out the me and one other son also had it. Now, we had no symptoms, not really things you would notice. But, my oldest is very small for his age. We thought nothing of it because both me and my husband were also the same way growing up. But, his sister took her daughter to the endocrinologist about growth issues and it turns out her oldest has a lack of growth hormone.
Long story short, we found out that my youngest son also has growth hormone deficiency. And, that's how we found out my oldest had Celiac, because that is one of the many blood panels they ran.
Now, after a year of being gluten-free, he hasn't really grown. And, despite following a strict gluten-free diet, completely revamping the kitchen, and everyone in the family following the diet, his levels are STILL in the positive range. He started around 150, I think, and we just had another test and it came back at 95 *(ttg IgA). This is after a year of eating gluten-free. The gastroenterologist's nurse was saying he must be cheating, etc. But, that's a load of bull because I know my son, and he's very careful about "the rules," no matter what it pertains to. And, he checks every label, takes his lunch to school etc etc. We were racking our brains but then I read somewhere that if your DGP comes back negative (which his has been for some time) that means that, yes, you are NOT ingesting gluten. But, having a positive ttg IgA means that you aren't fully healed.
We were just happy to see that the levels continue to drop, so we know we are on the right track. But, I had been wondering if just maybe somewhere he was ingesting a small amount of gluten.
However, when I got and read BTVC, I was floored! This completely sounded like my son. In that, it was very possible that his insides weren't healing because he was still eating other starches. He LOVES his popcorn, chips, pirates booty, anything carb.
So, we are seriously contemplating doing this diet. The ironic thing is that I don't do a lot of baking, etc. If we have treats, they are Glutino or Udi's gluten-free premade. But, I went whole hog and bought a bunch of Betty Crocker gluten-free mixes to make over the holidays. Turns out I didn't need them because my MIL made a ton of gluten-free cookies. (I'm wondering if I can return the mixes to the store????).
What I gather from reading the book is that, once his intestines are healed, since he wasn't having intestinal issues, like diarrhea and bleeding, after his levels drop, it would be OK for him to have the occassional gluten-free grain. Which, I think he would like. It just seems like so much more overwhelming than even going gluten-free did. No more popping to the pizza place to order gluten-free pizza for dinner. No more ice cream treats or hot chocolate, etc.
And, having to make my own yogurt sounds tough. However, I do like how one can make "ice cream" from it. And baking with almond flour sounds interesting.
I just have to talk to my son about this to convince him. I hope this will be the key to bringing his levels down to negative AND help with his growth. The endocrinologist put him through a bunch of testing again this year to try and help explain why he's STILL not growing. And, he did fail a growth stim test. But, his levels for other things are falling in low normal range. So, insurance will probably deny him growth hormones (although we will fight). $1700 a month for that medicine is too much for us. But, is he doomed to be tiny his whole life??
If we start, it will be within one to two weeks. I want to buy some almond flour and try out some recipes. And, then there's the committment to buying the yogurt maker and making the yogurt, which sounds really hard.
So, after getting a call on Friday from my kids' GI doctor saying their preliminary test results looked normal, TODAY (3 work days later), I get a call saying that their celiac panels show elevated levels. The NP said something like "well, it wasn't the celiac panel they called about last time, it was everything else (I'm assuming iron, thyroid, or whatever else they tested?).
Then, she goes on to say that they (the kids) must be cheating on the diet. This is greatly upsetting to me because 1) I was diagnosed with Celiac around the same time (we all got tested when we found out one of my kids had it), and 2) I buy the food AND feed the kids, and I KNOW that NO ONE ate gluten. We changed out all of our kitchen utensils, pots and pans, EVERYTHING. We are ALL eating gluten free, and my kids, especially the oldest, is very anal about checking to make sure whatever he eats is gluten free. To hear they think our kids are sneaking food or whatever just makes me upset.
So -- it's really about 5 month's later for one of my kids (by the time we got the initial diagnosis, etc). 6 months for the other.
Is it that it hasn't been enough time, yet? I thought going strictly gluten free would have made a difference by now. I mean, barely no eating out, and only ordering off of the gluten-free menu. Maybe eating out 2 times a month! ONLY buying food that is gluten free, vitamins, toothpaste, etc. I should know -- our grocery bills have gone up significantly making sure we are only buying gluten-free cereals, pasta, pretzels, oatmeal. We eat a lot of salads and chicken, vegetables, fruit, some dairy. Even our condiments -- gluten free!
I argued (well, strongly suggested) to the NP that, no, my kids are NOT cheating on the diet, and that we were all eating gluten free. She said she'd talk to the doctor and get back to us. We actually have a follow up appt. in a couple of weeks.
Wow! I echo what Tarantula44 said above -- about feeling great for 5 days, thinking that you are getting better, and then starting to feel bad again!
I never had GI symptoms, but I did have fatigue. After FINALLY feeling like I was getting a good night's sleep after going gluten-free, I suddenly started with GI symptoms. First, it was dairy. Then, I noticed that egg whites gave my stomach issues, so I had to stop eating them.
Now, I was exploring doing the Feingold diet and also reading about NIGHTSHADES. I haven't had tomatoes for several weeks because I THINK they were causing me to feel "foggy" and tired. I'm keeping them out of my diet for a while -- along with some other selected Feingold-suggested foods -- because I want to clear my system of them, to see if I do actually have some sort of reaction when I add them back in.
Just is crappy that we have to feel WORSE after eliminating gluten!
Hi -- no I'm just buying regular eggs and separating them out. I usually make 4-5 egg whites for breakfast every morning with my oatmeal. I haven't done that in a few days, though. Still feeling sick but not sure if that was because I went to a birthday brunch for a friend and the only thing I could eat (besides bacon) was -- of course -- eggs! So, I had an omelet. Been pretty sick since but not sure if that is a coincidence??
Just had a yogurt as an afternoon snack. I don't eat a lot of dairy, but here we go again. Stomach pains and bloating. Am I just resigned to vegetables and maybe some chicken or fish??
I've gone through 26 pages of posts, and I didn't find anything that talked about having Celiac but also intolerance to egg whites.
I know I'm not allergic to egg whites, as I had a comprehensive food allergy test a couple of months before my Celiac diagnosis. But, since I went gluten free in January, I've started to notice that my stomach gets upset and I get bloated and gassy whenever I have egg whites.
I've heard of some people being more sensitive to dairy once going gluten free, but I've never heard of problems with egg whites unless you've already had an issue.
Am I the only one? Also, can stopping gluten cause a reaction to the other IgA antibody trigger foods? Do I now need to start worrying about dairy, soy, chocolate, corn?
Have you had any food allergy testing done? Do you find that you are sensitive to any foods other than gluten?
I've only been off of gluten for 3 months. After the withdrawal period, I finally started to feel rested and like I have some energy. Now, I'm back to feeling tired. But, I think I've found that I now have an intolerance to egg whites. I'm not allergic to them, but a definite intolerance (stomach cramps, bloating).
I'm wondering if that is the cause of my renewed tiredness. So, I was wondering if you notice a sensitivity to other foods, too. Pay attention to that. It might take a while to notice.
I would just like to know what people's experiences are with any sort of tendonitis; back, joint, or hip pain, other kinds of "itis"; and broken bones.
I'm 44 and was just diagnosed positively about a month ago. Before that, I didn't have any sort of GI symptoms or anything to point that DRs to test for celiac. I found out about this by accident (long story).
In the past few years, I've had plantar faciitis, achilles issues (ongoing), my shoulder joints "pop" when doing certain exercises and I actually found out I have a micro tear in one shoulder's tendon. Two days ago, my big toe on my right foot started hurting -- seemingly for NO reason -- as if I have a stress fracture. I can't put any pressure on it at all. The pain is constant. (ie, not getting better or worse with rest or exercise). I had a stress fracture in this same foot YEARS ago (like 35?) while in college, and it is sort of the same feeling but a bit worse. I had done some lower body weight training that day -- which had included walking lunges -- but nothing seemed to hurt me at the time. I was actually in bed sleeping(!) when the toe started to hurt.
So, my question is, have any of you experienced what you feel is these sorts of pains, either for seemingly no reason or, if you exercise, for example, do you find yourself getting injured way too much?
I had a DEXA scan after my diagnosis. And, although the numbers are in the negative percentile, they seem within a normal range (I haven't yet discussed this with my DR).
What's weird is -- I eat pretty clean. A lot of protein (chicken and egg whites), veggies, salads, and I try to steer clear of gluten-free "substitutes" except in moderation. But, last night, I indulged on some gluten-free pretzels (about 20?), and my system was more normal today. You would think it would be the opposite. That my body would react differently if I ate a lot of the "bad for you" gluten-free junk.
Also, even though I had switched to non flouride toothpast, I was using a mint kind. Last night, I broke down and opened my normal cinammon one, also flouride-free. And, wouldn't you know? Today, I woke up and the canker sores were 80% gone!
My tests came back as a low positive. I had ordered the tests through my allergy DR after I found out that one of my sons had Celiac. Then, we were all tested and me and one other son had it! The allergy doc said I could see a GI or just try going gluten free, but I wanted to know for sure so I saw the GI.
What kills me is that when we were going through the whole diagnosis process for myself and one other son is that both me and my husband both had people who told us that they had a kid who "did have celiac but now the doctor says they have outgrown it."
I wish I knew what planet these doctors are from. My kids' pediatric GI doctor and everything I read says that you cannot outgrow this thing. And, even if you are "low" positive, reading about all of the things that you could get, from stomach cancer to lymphoma to liver disease, isn't it worth being proactive and protecting your health by going gluten free, even if there's just a chance? We had dinner with another doctor the other night, and he was asking about if we've planned our cheat days. I was like "what?" I wanted to "tear" into him, but he was a client of my husband's, so I couldn't really go off. Gee, what are they teaching these days?
I was diagnosed by "accident" with Celiac. One of my sons had a test for Celiac disease during a routine screening for growth and development issues. When he was diagnosed, we were all tested. I, and one other child, came back positive. None of us had any symptoms, at least the "classic" GI symptoms.
Now, for years, I had canker sores, off and on, some years worse than others. But, I remember a particularly bad year when I had them maybe 4 times, probably after my 2nd son was born. My dentist told me it was a virus and prescribed Valtrex. Nothing seemed to work until I stopped using flouride toothpaste. Why this worked was a mystery to me since I also used a flouride mouth rinse with no issues. The theory that is was some sort of additive in the toothpaste.
Then, years later (recently), when I was looking into the symptoms of celiac and saw that canker sores were a symptom, I thought I had found the answer.
Well, I've been gluten-free for just over 3 weeks. Like others I've seen on the board, I experiences a few days of withdrawal symptoms, when I felt tired and had migraine-type headaches. But, after about 4-5 days, I felt better and the bonus was that I no longer felt tired when I woke up in the mornings. No longer did I feel like I hadn't slept a wink when I supposedly had gotten 8 hours of sleep. This, if anything, was probably my only noticeable celiac symptom (that I'm aware of so far).
About a week and a half ago, I ran out of my toothpaste and started using one we had around the house. Within a few days, I got three canker sores. I finally put two and two together and realized that it could be the toothpaste. I stopped using it, finally got my old brand back, but the canker sores just are not going away!
Also, like I said above, before going gluten free, I didn't have any noticeable GI symptoms. But, now, even though I don't have diarrhea, I have VERY loose stools. Sorry to be so gross. But, there is just no form at all. Why would this be? Is it from some other issue? Like before, eating gluten made me slightly constipated, but not really, enough to have more solid BMs, and now that I'm off, some other issue I have is causing them to be the opposite?
Sorry to be so gross.
But, I feel like I have reverse celiac or something. Like, I had no symptoms before going gluten-free (other than a positive blood test, confirmed biopsy, and maybe feeling tired). And, now that I'm off of gluten, the symptoms are all starting to appear. What gives?
I'm SO glad that you insisted on getting the blood test. And, if it comes back positive, you MUST get an endoscopy, as much for your peace of mind than anything else.
Yes, the doc is right that a positive blood test doesn't mean you have it, but you won't know for sure until you have a biopsy of your small intestines.
Even though one of my sons was diagnosed with Celiac, my GI doctor didn't think I had it, even though my blood test was a low positive and especially after the endoscopy, which she said looked completely "normal." They won't know for sure until they look at the tissue under a microscope. So, don't let them tell you anything is "fine" until you get to the very end.
Lisa -- that's an interesting question. I've seen posts before of people experiencing withdrawal symptoms. Some people are having things like headaches and feeling generally blah, but other say that's crazy and you should only feel better.
I, my son, and my husband (who, incidentally, doesn't have Celiac but decided to go gluten free since we had to), all felt tired and had headaches, almost like migraines, for a few days after stopping gluten. But, even though we had a confirmed positive diagnosis, finding out about our Celiac was purely by accident. We weren't feeling "sick" and didn't have any "typical" GI symptoms.
So -- my theory was that maybe those who only felt better, not experiencing withdrawal, were the ones that had pretty bad GI or other symptoms before. So, after they stopped eating gluten, they could only feel better than what they were feeling before. And, maybe those without as severe symptoms before stopping gluten were just more aware of their bodies experiencing a withdrawal from gluten because they didn't really feel bad before?