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
Mbrookes, I appreciated hearing your understanding of the warnings on product labels. Recently I called Great Value about the "May contain traces..." warning on two of their products. The lady looked each one up and found that each is listed as being produced in the same facility with wheat. One of the products was also listed as being produced on the same line as milk. So it seems from this that these two products are not produced on the same line as wheat, just in the same facility, although they have the "May contain traces" warning. I think I will probably use them. One is cornstarch and I use a lot of that.
I too live in a "mixed" household. That's a good point.
Adalaide, I appreciate your explanation. I think I am starting to learn the ropes of all of this a little bit.
Shauna, thank you for the idea about getting retested after some time. Unfortunately I was never diagnosed with celiac. I had one positive blood test that is supposed to be not highly specific for celiac disease and all of the others were negative. So I do not know if I am celiac or even gluten intolerant. I do know I had a lot of the symptoms and there is definitely some improvement in this first month of gluten-free, though I am far from being "there" yet.
Annie, I am sorry that you are going through that. I wish that I knew what to tell you. Remember that it is not your fault that you are trying to do what is necessary for your health. Even if your husband is unhappy about what you are doing, you are trying to do the right thing, so don't allow yourself to feel guilty. (By the way, I'm so glad you are now feeling better after years of problems!)
My husband also does not understand the importance of CC. He was just this morning talking about a celiac friend who was very sick and who he thinks is not worried about CC. And I was not deathly ill nor did I get conclusive bloodwork nor a definitive diagnosis. So he does not think that I am celiac. Thankfully he buys gluten-free things for me, which is really nice, but he makes fun of my concern about CC. Because I'll probably not have an earth-shattering reaction if I get trace gluten (probably bathroom trouble and fatigue), it is hard to make a case to another person that some little bit of something probably affected me. Thankfully my husband does very little in the kitchen, but I still haven't been doing too well with the CC, as I have little children and they too are eating gluten.
Yes, your labwork looks normal, but even if a person gets a normal blood result, this still does not guarantee that the person is not celiac, or is not intolerant to gluten. Since your child has experienced improvement on the gluten-free diet, and since you also have symptoms, you may want to do a strict gluten-free trial and see if it helps. Or, before doing that, you might choose to have additional celiac tests that were not included in your panel. It's up to you and also depends on how much you want to spend.
I ended up having a full celiac panel and only one of the tests came back positive. Of course that doesn't guarantee I have celiac disease, but the doctor thought it pointed that way and advised me to go gluten-free. I have just had to accept that I'm not ever going to really "know" if I'm celiac or not; I just want to be well! So whether or not you have a diagnosis, it is a good idea to give the diet a try and see if it resolves your problems.
Thank you so much, Adalaide and Psawyer, for taking the time to write such careful responses to my questions. I really appreciate your taking the time, and I appreciate the two perspectives too. Since I'm just starting out, it is hard to say how sensitive I may be. It also seems like there is not one hard and fast rule for some of these things, but that maybe there is room for using our good judgment and trying to see what works for us and what doesn't.
Adalaide, I have a question. I hope you don't mind; I'm just really trying to learn. In the thread about "Do grains have to be certified gluten free?" I notice you wrote that you buy things in bulk, by the box, or when a scoop is not involved. Do you try to find out the sources of all those grains and contact the processors of them, or do you find that you don't experience problems with them? I know you mentioned in one of your posts that you had a problem after eating veggies that had been cut on a cutting board that had touched a pizza stone, so I would be interested in whether you've had a reaction to the grains you buy in bulk, or how you research their sources. That is really what I'm looking into in my own case too. Thanks!
No one needs to answer all my questions, and I don't mind getting a variety of different opinions either. I know some people experience symptoms more easily than others from very small amounts of contamination.
A bit about me: I am new at gluten free living, although I've read quite a bit. I am a frugal shopper, like to buy the store brands or in bulk, and do not like expensive products if not necessary . (I do buy gluten-free oats.) So I'm trying to learn what are reasonable precautions, but I don't feel like I need everything that I eat to be certified gluten free. After all, I live in a wheat-eating household, so I don't expect to never meet with a tiny bit of contamination from time to time.
1. Which of the following products would you not feel safe in buying unless they were labeled gluten-free: Millet, buckwheat, popcorn (unpopped), millet flour, rice flour, cornmeal, buckwheat flour, soy flour?
2. Do you feel it necessary to contact the manufacturer for every food product you buy if not labeled gluten-free (obviously with no gluten in the ingredients)? How about for things like: canned tomatoes, spaghetti sauce, canned beans, salsa, dried fruit, nuts, and ketchup? How about corn chips?
3. Do you feel that items with allergy warnings (may contain traces of wheat) are too risky? How about "Processed in a facility that also processes wheat"? Do you make any difference between those two?
4. I contacted my favorite bulk health food distributor, which packages their foods in a mixed facility. They said, "We do our best to clean the equipment between products, but cannot fully guarantee that gluten is not present on the equipment." Personally I feel like I would buy from them. What do you think?
5. The mill that supplies their grains "does clean their equipment between product runs, but again, cross contamination is still a possibility." Is it too risky to buy grains/flours from a non-dedicated mill?
Thank you all for your perspectives on flour and contamination. I like the idea of a mask. For now I have the bread maker down in the basement and I guess I will see how that goes. I may have to change that arrangement eventually too.
Thank you, MitziG, for your encouragement. I really do appreciate it!
Was your positive TTG and IGA or IGG, if you don't mind my asking? It seems like there is more confidence out there in the IGA, for someone who isn't IGA deficient, than for the IGG. When I called the University of Chicago Celiac Center, the lady that spoke to me thought that if I were a patient there they probably would not even recommend me to get a biopsy, with the blood result I had.
Anyway, after doing some reading I am determined to do better with cross-contamination. I moved the bread machine and flour bins down to the basement (I have to make bread for my family and also my parents) so there won't be flour flying around in my kitchen. And I'm going to be more careful with the children's food too.
So the verdict is...that I do not have a definite diagnosis.
I had really been wanting something definitive. Some here will recall me posting earlier about my complete celiac panel, which included DGP (IGA and IGG), TTG (IGA and IGG), EMA IGA and total IGA.
Total IGA was normal and all celiac markers were normal except TTG IGG, which was 11, with the normal range 0-5. This test was taken 4 weeks after a 2-week-long gluten free experiment. The doctor said it was not a definite diagnosis but pointed in the direction of celiac disease, and advised a gluten-free diet.
In case that gluten-free experiment could have affected the test results, and wanting something more definitive than the TTG IGG, which seems to be viewed as not very definitive in IGA-sufficient individuals, I ate gluten for 3 full months, then had TTG IGA and DGP IGA retested. They still came back normal.
I had had a strange bout of sickness and was suffering insomnia, flu-like symptoms, loss of appetite, and cramps, so this prompted me to really want to rerun the testing. Immediately upon return from the doctor I went gluten-free and have been for the ensuing two weeks. I'm not feeling better than usual yet, but bathroom problems have largely resolved, although this problem was showing some improvement even before I went gluten-free so it is hard to tell.
I was and am determined not to go for the endoscopy, because I don't feel it is worth the huge cost in our circumstances. However I had really hoped for something definitive with the bloodwork.
It seems from what I read, that the TTG IGG still gives you a high chance of being celiac. However, I don't know if I'm celiac, and because I haven't really recovered yet I don't know if I'm even gluten intolerant!
I have no problem sticking to the gluten-free diet (no cheating), but because I'm living in a house with three people eating gluten, including a toddler and preschooler who need help with their eating at the table, etc., and because I'm tired, I'm afraid there is cross-contamination going on. I also do lots of flour baking/cooking for the rest of the family. And I'll admit that it is hard to be motivated about things like new cutting boards and wooden spoons, and leftover toddler food if it didn't seem to have contacted any crumbs (you get the picture!) as it would be if I could say, "I know I have a problem with gluten and I know this effort is worth it because I know I'm going to get better if I keep extremely cautious about this."
Also I wanted to know if my girls were in genetic danger, and without a diagnosis I'm not sure of that either, but I'm going to go ahead with testing for the older one, and a gluten-free trial for the younger one (still nursing), because they both have symptoms of possible intolerance.
So I think I just have to accept the lack of certainty and move on. I know a lot of you here have done that. I don't know, however, if I should consider myself very likely celiac, and do the diet and not look back, or consider myself not celiac and just try the diet for a few months, then challenge with gluten to see what happens.
It appears that you had the same celiac panel, from the same lab, that I did, and your results are also strikingly similar to mine!
I too, only had the TTG IgG positive. It was 11 with the normal range 0-5. TTG IgA was <2 (range 0-3). The other tests were also negative.
Understandably, I have the same question as you do! I had also done some gluten-free experimenting, one week, and two weeks at a time, but I ate gluten for four weeks before taking the test. I decided to eat gluten for a full three months and then repeat some of the bloodwork. I am now awaiting the results.
So I do not have an answer for you, but maybe it's nice to know that you are not the only one who got a result like that.
I chose to repeat some of my own bloodwork because I felt it was inconclusive and because I thought that possibly my gluten-free experimentation might have affected the results. I did not want to go for the biopsy personally. However, whatever the results turn out to be, I have decided to do an extended gluten-free trial (my doctor also recommends that I go gluten-free regardless of test results) to see if it helps. Not all celiacs are picked up by the tests.
Thank you, Ravenwoodglass and MitziG. Your input is much appreciated.
I plan to make an appointment with a GI tomorrow. Today I've had dizziness and increase of my problem with balance. It has me quite concerned. I do not know if that is connected with the other problems or not, but I do hope to get to the bottom of it. Even if I end up having to do the endoscopy. It is a shame that it is so expensive.
Thank you, Takala. Yes, I do have small children and I am involved with their feeding during meals. I would always brush my fingers off but it may not have been good enough. I'm still new to all this!
Thank you for your thoughts on a possible course for me to take. It is unfortunate that the biopsies are so expensive. For that reason, I'm hoping I can avoid it. But it's true that it might provide a quicker answer.
I so appreciated those who wrote a couple of weeks ago when I received my test results. Ever since then I have been uncertain what to do next.
Briefly, I'm 31 and have several symptoms including loose stools and diarrhea, gas, abdominal cramping going down into the legs, abnormal level of fatigue, mild feeling of loss of balance/lightheadedness, canker sores, headaches,and went through infertility in the past.
I had the full celiac panel, am not IGA deficient, and came back positive only for IGG TTG with 11, and the top of the normal range being 5. The PA who did the testing felt it pointed to celiac but was not definitive, and advised me to either go for a biopsy or to start a gluten-free diet as a trial. I did not want to do that, because 4 weeks before my test I had tried two weeks of gluten-free already, and 2 weeks before that I had tried 1 week of gluten-free. I did not want to do any more experimentation without first ruling out celiac. If I can rule that out I'll be happy to go gluten free.
I called U. of Chicago celiac disease center and the woman there did not think that their doctors there would have recommended a biopsy for me with a test result like that.
I've been waiting it out till I can have a good three months since my gluten-free experiment to retest again, but because of the concerning symptoms, and the fact that I do not even know if I am "barking up the wrong tree" altogether, it is kind of scary to keep on, not knowing what I'm dealing with. I also had a high reading on the "alk phos" test, 182, with the top of the normal range being 99, and I wonder if I could have bone loss. The doctor thought that reading could be not a problem, and did not pursue it. I've been pregnant and/or nursing for the last over 4 years, and still am nursing. So I feel scared in a way, not knowing if I'm hurting myself, but not sure how to find out! Unlike many others who do a gluten challenge, I do not have past experience of feeling good off gluten and knowing that that is my problem.
Obviously finances are an issue so that is why I can't rush out to get all the possible testing for any possible problem.
I'm considering trying an Enterolab TTG test, while I'm waiting to retest the bloodwork in August or September. I do not know if that is able to conclusively rule out celiac or not.
Thank you for listening, and any thoughts are appreciated.
Thank you for those additional ideas. MitziG, I agree that it could take a while for me to see all the symptoms go away, and during that time, if I do not have a diagnosis, I'll be likely to worry that I'm not really celiac and that I am missing the real problem. I'll be seeing my doctor again and asking about retesting some time in the future.
Thank you so much, everyone, for your replies. They have been very educational. After reading what everyone has shared, I realize that it's not possible to know whether or not I have celiac, but that I could. I think I will ask my doctor if I can wait a few months and test again. The only thing is that I do not look forward to keeping on with the fatigue for several more months!
Well, I did not have clear-cut improvement from the time going gluten free. It is hard to say. I felt like things got worse after I went back on gluten, but of course that doesn't prove that the gluten is implicated. I guess I would really like to know if I have celiac so I would know if I am at risk for the associated conditions, and if my close family members are at risk of having it. Otherwise, it's true, I could just start on the diet.