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 had my son tested back in 2009, primarily as a response to his declaration that "I'm never eating gluten again." He was 14 at the time. We had been eating gluten-free at home for a couple of years already due to my extreme gluten sensitivity (I never was tested for Celiac, although my doctor is convinced I have it), and he had trialed a gluten free diet previously but had given it up after a couple of months, declaring that it wasn't making a difference in his health issues.
We had already had a blood test run some time earlier (routine because other family members had been diagnosed with Celiac), but with no positive results, and I wanted something for my son to look at as confirmation of what was already obvious to me - that he needed to be eating gluten free.
Anyway, he tested positive for both the Anti-giladin IgA (28 units) and the Anti-tissue Transglutaminase IgA (26 units). His genetic results make no sense to me but are as follows:
HLA-DQB1 Molecular analysis, Allele 1: 0303
HLA-DQB1 Molecular analysis, Allele 2: 0501
Serologic equivalent: HLA-DQ 3,1 (Subtype 9,5)
Dr. Fine's interpretation of this was that he has two genes known to be associated with gluten sensitivity, but none associated with Celiac. Which is interesting, since we do have other family members (my mom and my sister) who have official Celiac diagnoses through traditional lab tests. Nobody but my son has had any genetic testing done.
The upshot of it is that my son has been gluten free since 2009 and, other than accidental exposure here and there, has been able to maintain the gluten free diet all this time. He gets obvious GI symptoms when he eats gluten (which we already knew before the test) so for us the Enterolab results were helpful. They also were useful for distributing among extended family members, including my son's father, and I feel pretty strongly that it helped us avoid a lot of the "why do you have him on this horrible diet when his blood test came back normal" backlash we could have otherwise received from that end of the family. In addition, the gene test alerted his father to the fact that he apparently also carries a gluten-sensitivity gene, and in the intervening years between then and now several of my son's cousins on that side of the family have jumped on the gluten-free bandwagon. I can't help but think that the awareness that the gene was lurking among them might have helped some of those kids avoid years of misdiagnosis of troublesome symptoms.
Overall, I feel it was money well spent. I'm not sure I'd go the same direction again with any other family members, especially since there are apparently some newer blood tests which are more widely accepted. Even though this blog post is super old, I just wanted to share what my experience with Enterolab was. I do wish he would publish something peer-reviewed on the subject of fecal testing, though.
So, another year has gone by... did you ever get a response?
I'd be interested in knowing whether they're continuing this practice of including a barley-derived ingredient in their products which are labeled "gluten free."
Even though the resulting product has a low level of gluten that most people probably won't notice a reaction to, I still feel that it's dishonest marketing not to fully disclose the ingredients on the label so people can make an informed choice.
I'm more comfortable buying TJ's stuff than things made from random companies where I don't know what their manufacturing practices are like. At least I know TJ's has policies in place requiring their manufacturers to use safe allergen-handling practices. Of course there's no way to know how well those policies are actually applied.
I figure every time I buy a prepared food from a company that doesn't exclusively specialize in gluten-free foods, I'm taking a risk.
I buy TJ's stuff occasionally, but I wouldn't make their prepared foods (or any prepared foods) a part of my daily diet. I've heard cases of people getting sick from it, but most of my Celiac friends do fine. Same with Amy's brand gluten free things. They're made in shared facilities and often on shared equipment and there's a risk that someone didn't clean things well enough one day and that's a risk you have to live with if you buy prepared foods.
And the Applegate recall really gave me pause about buying prepared foods from companies that make gluten-containing foods.
The safest thing is to learn to eat basic fresh foods. To the extent that I can keep my own laying hens and plant my own garden that makes my food chain even more secure; I only wish I could do more. I'm going to try planting buckwheat this year, though.
Last time we went to Disney, my younger son decided the night before we went that he was "never eating gluten again." Our home had already been gluten free for a couple of years, and he was starting to suspect he had an intolerance and it was confirmed the first couple days of our vacation when he was out eating "normal" food. He was really depressed about spending his first gluten-free day at Disney but it worked out great. We were able to get pizza and burgers and fries and stuff. He has been to Disney again since then, without me, and again had a great experience in terms of food.
We didn't really do much in terms of "homework." We were only there one day, though. I called ahead of time and they said that gluten-free was becoming such a common request that almost any restaurant would have something I could eat (at the time of course I didn't know my son would be eating gluten-free too).
I don't think it's very common for there to be gluten in laundry detergent. Shampoo and soaps are another matter - I bring my own.
I look for hotels with kitchens, or vacation condos. I am not comfortable eating out very much unless it's at a dedicated gluten-free restaurant.
I bring a roll of tin foil and line any baking sheets or whatnot before using. The first thing I do when I arrive is re-wash all the dishes and utensils. I don't use the toaster at all. If there are plastic or wooden utensils, I don't use those either.
What a neat idea! I don't make lasagna because the kids hate ricotta. Yeah, I know. They're weird. With a pan like that I could totally just leave the ricotta out of one section.
I would not put gluten noodles in any section, though. We keep our whole kitchen gluten free for the two of us who need to be gluten-free. Even if I lived with a mixed kitchen I certainly wouldn't do a mixed pan. But when my YDS was more or less dairy free I would have happily made him a goat cheese section. He wasn't real strict about his dairy intake anyway.
I thought all the Lindt brand chocolate had barley malt in it. I know all their chocolate truffles do.
I don't suppose your store in Japan carries the Guittard brand chocolate. Guittard products are all made in a gluten free facility. They make mostly baking chips but they're quite good. I had a small handful of giant milk chocolate chips after breakfast this morning.
I read on another site that they are considering dropping their gluten-free menu and anti-cross-contamination kitchen policies. They have chosen a location in Destin, FL to test market the change, and they no longer offer specific gluten free options though they'll try to accommodate individual requests as they come in.
I don't live near a CiP but I've eaten there when I've traveled and always felt pretty good about their reputation for gluten-safe food. I wrote them a letter. I wonder whether other CiP patrons might be interested in writing letters to them as well.
Last time I went to my Chipotle, when I told them we had a "gluten allergy" the first person in line called down to the rest of the staff. As soon as the order ahead of us had cleared the line, All of them, like in unison, changed their gloves and got towels out to wipe down the prep counter. The person at the front wiped down the tortilla warmer. Then they all stood there with the clean counter waiting for our orders to come down. I was very impressed.
Of course there's a chance of cross contamination in the ingredients, but in general flour tortillas don't "shed" as much as regular bread or of course loose flour. I only rarely eat out at places that aren't 100% gluten free, but on those occasions when I really need to I feel pretty good about our local Chipotle. At other locations I have had to get a little more specific and ask them to change gloves and such; but I still feel pretty confident that the level of contamination is lower than just about any other restaurant I could eat at.
This is a difficult parenting decision, and obviously different people will have different opinions on it. There does come a point where the child will have to self-monitor and a parent cannot physically force the child to adhere to the dietary restrictions. At what point do you come right out and say "It's your choice" vs. forbidding the child to partake and dealing with the lying and the sneaking? I think only you can make that decision for your family.
I hope she's feeling better. I also hope she learned something from this.
I'm really angry about the fact that they will label their stuff gluten-free when they know darn well it contains gluten -- even if it is only "trace" amounts.
I won't buy anything at all made from that company because I don't trust their labeling practices.
It's sad, because the only non-dairy "milk chocolate" I can find is put out by the makers of Rice Dream. My son is not that sensitive and he could probably eat it with no problems even if it does contain trace amounts of barley, but I don't even like to support the company.
When they issue an apology and change their labeling so that items which don't contain barley are not marked as gluten-free, THEN I will buy things from them.
Bumping this old thread... any new or updated info on gluten-free dining (or shopping) in Kauai? Our family is going there in April. We've got one gluten-free (me), one gluten-free/CF (younger son) and one allergic to pineapple! (older son). I feel so sorry for him not being able to eat pineapple in Hawaii...
When I had my diagnosis of IBS in approximately 2001, it was with nothing more than a digital rectal exam and asking about my symptoms done by a nurse practitioner. No further tests were ordered. No course of action was suggested. No medication was prescribed. I was told it was IBS and I was just going to have to live with it and try to avoid foods that made it worse.
I still don't have an official Celiac diagnosis, though my family doctor 100% believes that's what I have. I tried the gluten free diet before discussing it with my doctor, and then I was unwilling to go through a gluten challenge because my results were so dramatic.
Anyway, back to the original question, I did have pregnancy complications with my first baby (IUGR with no explanation) and I now wonder whether that was due to Celiac. My second pregnancy had no complications. Both were long before I had any obvious Celiac-like symptoms (1994 & 1995). In August of this year I just had my third baby... the first since being gluten free. No complications at all. We had to use IVF but that's because my husband is sterile. She is my biggest baby yet and weighed 8 lbs 4 oz at birth. I would strongly recommend staying on the gluten-free diet for a few months before TTC. If nothing else, you want to be as healthy as possible going into your pregnancy.
Check back with the "Alternative Specialist" and see what he put in your medical records. You may HAVE a diagnosis of gluten intolerance.
That's no guarantee that your other doctors will accept it, but that's true no matter who does the diagnosis.
I don't have a diagnosis, since I went gluten-free sort of by accident before I ever sought a diagnosis. By the time I believed it was my issue because of the miraculous health turn-around, I'd already gotten to the point where I couldn't bring myself to eat gluten any more. My doctor did order a blood test for me, but it was predictably negative... her point was that Celiac can be very serious, and if I was showing positive even on a gluten-free diet they would need to know that. All I have is that "Gluten" is listed as an allergy in my medical chart... so I guess if I end up in the hospital (which I hope not; I'm even planning a home birth) they'll have to give me gluten-free food, but to be perfectly honest I would have a hard time trusting them to prepare everything gluten-free. I get pretty sick just eating things that are prepared in a non-gluten-free kitchen.
Anyway, we put my son through the Enterolab tests, and he came back with elevated antibodies in the stool, and two copies of a "gluten intolerance" gene but no copies of a true Celiac gene. He feels much better on a gluten-free diet. My niece is going to do the Enterolab test next. My mom and sister have both been diagnosed with Celiac, though we don't really know for sure what their genotypes are.
I know the Enterolab tests are expensive, and I've chosen not to bother with them for myself although I'm super curious. But they wouldn't make any difference to me at this point; I already know I can't eat anything that MIGHT have even come in contact with gluten, so what else is there to know?