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 think that for many of us, the emotional toll of gluten ingestion is unavoidable. A woman doctor friend of mine told me that she considers gluten to behave as a "neurotoxin" for many of us. I've been gluten-free for 3 years, and if I have a bit of gluten accidently, I'll be on the verge of tears for 24 hours. The woman who sits next to me a work has celiac and she has the exact same experience.
It helps me to know that it's the gluten doing it - it's not my life or my job or my relationships. It's just the dumb gluten. I always drink lots of water on those days , and if it's a work day, I start out the day with caffeine - which seems to counter the dull headedness of gluten.
I live in Seattle - and I'd love to know the name of the restaurant you went to where the chef came to your table 4 times! I highly recommend Wild Ginger downtown - the majority of their menu is either already gluten free, or can easily be made gluten free. Also, try to make time for a trip to Flying Apron Bakery in the U District. You won't believe their gluten-free, vegan chocolate cupcakes.
happy travels, Laurie
Sara, Many of us have recurring depression issues that are directly related to gluten ingestion - the woman who sits next to me at work is also celiac. Whenever either of us has a gluten exposure, that person is extremely depressed (i.e. on the verge of tears) for about 24 hours.
I encourage you to tell your 3 year old that you have figured out what's wrong and that you will get better. I was diagnosed when my daughter was 4, and my recovery took longer than most for reasons I won't get into in this post. When she was 6 she told me that she thought I was going to die. I still get tears in my eyes thinking about the burden my poor girl carried around with her for those 2 years
I now feel better than I have in my entire life, and I hope that you can say that in 6 months too!
(A year after I was diagnosed, my daughter was diagnosed too)
I agree with your statements about "allergy" not representing our auto-immune condition - but what out Terri, who is eating out in restaurants all week? That's where the rubber hits the road for me - what do I say in a restaurant? My experience is that restaurant staff snap to attention when they hear the word "allergy" and that "gluten intolerance" and (rather controversially) "gluten allergy" are the operative words in the restaurant world.
If any of you have had experience making the whole "eating out" scene work in other ways, I would love to hear about it.
Terri, I just survived 10 days away from home and (miraculously!) returned home well. Yet another disaster averted - at least that's how it feels.
It would have been fun to run into you on Maui! Here's a summary of my trip, which contains different info from Heather's, for the most part:
Near the Airpot:
"Down to Earth" is a health food store on Dairy road, across from the large shopping center where Borders Books is located. This store, and Mana Foods in Paia, are the best health food stores on Maui and I purchased all my gluten-free stock foods at these two locations. There is a smaller Down to Earth in Lahaina as well (downtoearth.org)
My favorite restaurant on Maui is the Hula Grill. It was literally the only restaurant I went to where they had heard of gluten intolerance. We had late lunches / early dinners here 3 times (and I have a 7 year old, so it's obviously kid friendly). Not cheap though.
Maui Taco is walking distance from the Lahaina Down to Earth grocery store, and is a fab place to get rice and beans and guacamole (adn cheap!)
Compadres is a Lahaina mexican restaurant that also had surprisingly good food (e.g. grilled fish wrapped in lettuce leaves instead of tortillas!)
We ate at the Sansei restaurant twice - it has quite a fine reputation locally, and we had a 1 hour wait the first time we went. The 2nd time we went at 5:30 (when it opened) and found out they give a 25% discount for people who arrive between 5:30 and 6:00. Probably the best japanese restaurant I've ever been to (sanseihawaii.com).
My eating habits changed drastically for this trip - I had fruit for breakfast, whatever was around for lunch (I hauled rice cakes and hazelnut butter around in a cooler), and then splurged on an early dinner. We found grilled fish EVERYWHERE, so I know you all can make this trip work.
In addition to gluten, I also have to avoid dairy and corn and soy - so if I can enjoy 10 days on Maui, you probably can to!
It's nice to have a doc on the Board (and do you own a Bichon also? we have a sweet Bichon puppy named Rosy). You are probably aware that all children in Italy are screend for celiac by age 6 (Healthlink article by E. Early) - I'm wondering if you have the ability, especially since you are a ped doc, to screen all your patients for celiac? I'm curious as to how many hurdles there would be for you to undertake a project like that in the US (and my apologies if my assumumption that you're a US doc is incorrect).
Italy's socialized medicince encourages medical decisions / policies that consider future costs (not just annual costs, which is how our increasingly corporate health care system works). Sigh.
I will post all my gluten-free Maui highlights when I return in mid-April, but in the meantime, I wanted to report that the St. John's listerserv has made their archive searches MUCH easier. Go to
and select "search archives"
I did a search on Maui from Jan 2000-Jan2004 and came up with a ton of gluten-free information for Maui.
We'll have 2 gluten-free 7 year olds, and 2 gluten free mamas on this trip (and my husband, bless his soul) - so I will be full of information in just a few weeks!
I got my restaurant card when I joined the gluten intolerance group (GIG at gluten.net). The card helped me shop at the beginning (when I couldn't remember what I was supposed to eat), but hasn't helped much at restaurants.
At restaurants with chefs (the white table cloth places!), everyone is already trained on this issue and all I need to say is "no gluten!" and they all snap to attention.
At places without staff who are trained in food allergies / intolerances, I have to explain everything and ask my 12 zillion questions about the food whether I have the card or not. Although it can be helpful to send the card back into the kitchen with the wait staff.
I ate out last week, by the way, at an amazing restaurant in downtown Seattle (Wild Ginger). Four of us ate family style, and I could eat everything on the table. I'm gluten-free, dairy, soy and egg free - I must admit I got a little weepy because I was so happy! And the food was great too!
Are there any celiac support groups in your area? That's be the best way to find a really great doc, and to get the best help for your children. Most doctors, in my experience, are pretty clueless - so you'll save time and heart ache by getting a recommendation. I'm really really happy for you that you've been diagnosed! I was diagnosed when my little girl was 4 - how wonderful that you will be able to share the best years of your life with your children. My daughter is now 7 and has been gluten-free for 2 years.
I hate to even admit to you how I solved the eating out problem. After getting sick more times than I can count (and I also have a celiac 7 year old), we almost completely stopped eating out. Except once a month, or once every 2 months, we now go out to fairly expensive restaurants. Because I go to the same expensive restaurants regularly, the wait staff know me. And the chefs dote on me. I figure that a $120 restaurant bill every 6 weeks averages out to $20 a week, which isn't so bad - - and it makes me feel like a queen (AND I don't get sick!!).
We only take my daughter out about once every 3 or 4 months, and I guess she'll have a rather distorted view of going out (e.g. no pizza parlors, but lots of white tablecloths!).
That is an absolutely remarkable story, thanks for sharing it. It is a miracle that you figured out your daughter's situation in spite of the lack of help from the MDs you saw. Like you, a naturopath is the first one who tested me for celiac (after no one else could figure out what was wrong with me).
THe topic is drifting to blood type diets (which our family has found works for us), but I must circle back to the original topic of.,.....celiac is everywhere!
It's been 3 years since my diagnosis, and not only do I still see celiac everywhere (much to the annoyance of a few of my patient friends ), but quite a few people I know have been diagnosed with celiac as a result of my telling them my suspicions. And those that don't have celiac ended up identifying some other severe food sensitivity (e.g. dairy or garlic or eggs or corn). Frankly it's hard for me to believe that the ratio may be 1 in 100 (as cited in the new UK study) when there are 2 celiac kids out of 11 of the kids in my daughter's class, and 3 celiac women (possibly 4!) working on my 13 person team at work.
I think that celiac is common - but that other food sensitivites are also very common. Maybe the two together add up to almost "everywhere?"
I'm glad you started this post because I thought it was just me!
It has never seemed quite right to me that celiac isn't considered an allergy just because it doesn't trigger an IgE response (but instead triggers an IgG and IgA response). There's a wonderful book by Jonathan Brostoff (Food Allergies and Food Intolerances) that talks about the differences between allergies & intolerances and the history of western medicine's focus on IgE responses.
My recollection is that western medicine focused on IgE responses, partly due to the fact that some IgE responses can cause anaphylaxis, and ignored IgG, IgA and other immunological respoonses for a very long time. Everything not IgE was relegated to the category of "intolerance" even though IgG and IgA symptoms can be as severe (or more severe) that IgE responses.
Personally, my IgG casein response is more painful and long-lasting than my IgE almond allergy. And most of us would agree, I think, that our IgG and IgA responses to gluten are nothing to trifle with.
After reading this book and getting a better understanding of the rather arbitrary distinction (medically speaking) between allergy and intolerance (e.g. why is IgE so different that IgG and IgA?), I have no trouble thinking of celiac as an allergy. If there are any immunologists out there reading this, I'm interested in your opinions on this topic. I have noticed that many labs / phyicians are now choosing to refer to IgG and IgA responses as "allergies" - do a google on "food allergy IgG" and you'll see what I mean.
Okay, that's enough on this topic. Can you tell this is a button for me? THere's nothing like arbitrary western medicine to get me going.
A doctor friend of mine explained to me that there's a protein in oats that is very similar structurally to the protein in wheat gluten - and that's why some people are sensitive to both. I have met a few celiacs (including my friend's daughter) who get horribly sick from oats (even uncontaminted oats).
There was a link distruted on the St. John's celiac listserve a couple months ago that explained that oats can be sold in the US and identified as Oats even if they contain up to 1% other grains (e.g. wheat), which is certainly possible given the field rotations, shared equipement, etc.
Since I can't eat eggs or dairy products, and I do occasionally travel for work, breakfast is my most difficult meal on business trips. I stayed at the Chicago W Hotel last November for almost a week, and couldn't BELIEVE my good fortune to find that they served McCann's oatmeal for breakfast.
Happiness comes in unexpected ways and surprising places
Have you heard about leaky guy syndrome? Here's one (of many) info links:
The basic idea is that when your gut is torn apart (which happens with celiac), your intestines stop functioning as a barrier to undigested food, yeast, etc, and lots of stuff that isn't supposed to get into your body DOES! When the undigested proteins et al. get into your body, your immune system sees them as invaders and you develop an immune response to them.
As an example: during my first year of celiac recovery I ate almonds every day as a way to try to keep my weight up. Soon I started noticing a reaction to the almonds, including abrupt temperature drops and shivering. I had an allergy test done, and was shocked to find out that I had developed a fairly serious IgE (traditional allergy) response to almonds. I am sure I developed that allergy just during that year.
I also can't eat casein (in dairy products), corn, soy, eggs - and I've been gluten-free for 3 years. I"m hoping to gradually recover the ability to eat these foods. But that's what 40 years of undiagnosed celiac did to me!