Celiac Disease - and the local "Gluten Free" dining scene

OK...So...My lovely bride was recently diagnosed with Celiac disease (by a real live doctor) and as a result we are in the midst of redefining our dining options. After doing as much research as one can do in the matter of a couple of weeks, along with having conversations with a couple of trusted members of the local restaurant community, I've gotta say we're not -real- comfortable with the "local" gluten free dining options. If appearances mean anything at all, the corporate restaurants seem to do a much better job of providing gluten free menu options as well as training their kitchen employees in the proper handling and preparation of gluten free choices.

Anyone have any experience with this stuff...either IN the kitchen or as a customer ?

The J. Gumbo's menu turned out to be about 50% Gluten free entirely by accident and without any awareness on our part (it was 2005 and Gluten wasn't nearly as infamous as it is today).

Since wheat is the culprit, I'm not sure what the difficulty is. Not everything has to contain wheat, right? Processed foods are likely the real foe and avoiding those is probably the first step in being more actively gluten free.

Ronnie the problem at most restaurants is contamination and lack of knowledge about ingredients. Contamination can occur when something is fried in the same oil that just had a batter in it. Or a gluten free pizza is laid on a table that had a gluten pizza on it. Regular soy sauce contains wheat as do a lot of things that use wheat as a filler.

Steve you are correct that the chains are more aware but it just takes a little recklessness to spoil things. PF Changs does a good job. Just a guess but try The Mayan Cafe, great food and they always have a great handle on their ingredients. Good luck.

Grind is very conscious about gluten free, the owners have family that have Celiac. They have gluten free buns available and are very carefull to avoid cross contamination. Annie May's Sweet Cafe on Frankfort Ave. does gluten, nut and soy free. There is a web site, www.glutenfreelouisville.com, that lists restaurants with gluten free menus.

Steve-

I'm sorry to hear about the Celiac diagnosis. In some cases, the gluten free diet makes you feel so great that you never miss all of the gluten and in some cases, the diagnosis causes some stages of grief, much like a death. It can be difficult to lose the social aspect of dining out as well, due to food fear. It can also be difficult to have anyone on restaurant staff roll their eyes at your special requests when you are already terrified of food. Unfortunately, despite the diagnosis, we all still have to attend family and friend events at restaurants and sometimes we eat there just to feel "normal" again.
My bakery is currently the only dedicated facility in the city and we are the only gluten, soy, and nut free facility in the state. We mill our own grains and do gluten testing on new products that we use, to keep everything as safe as possible. The good news is that we can provide your wife with delicious soft bread, desserts, and birthday cakes so that she doesn't feel like she's missing out. We also keep a customer freezer of frozen pizza, mac and cheese, etc. Every Saturday, we do a full breakfast service of biscuits and gravy and french toast.
As for dining out, I wish I could help you more but the cross contamination is definitely an issue for most restaurants in this city. This city has just started to embrace the concept of food allergies for customers and most restaurants have a lot to learn. Also, it's difficult to trust someone who doesn't have a food allergy to make your meal as safe as possible, not because they are out to get you, but because they are unaware. We do sell buns to Grind Burger Kitchen and they are excellent about cross- contamination. I have also not had an issue at Feast BBQ, Silver Dollar, Varanese, Bonefish, or Carrabas. Mexican food is always a great option because of the corn tortillas, unfortunately, about half of Celiac patients end up reacting to corn gluten the same way, although my corn reaction took about a year to show up after the Celiac diagnosis. Pizza seems to be the least safe option in town. Even if they have a gluten free crust, flour is flying around a pizza kitchen at all times. Or, some places with use the same pizza cutter/pans after they took every other precaution. I wish I could list more, but I have been extremely ill at many places in town that assured me of no cross contamination.
I hope she does well with the change in diet. I never realized how ill I was and how much enjoyment of life I had lost due to sickness and pain until I was properly diagnosed. I wish her well on her new diet and she can come have lunch with us anytime.
-Annie May

I'm sensing a learning opportunity.

It never occurred to me that those with Celiac would be sensitive to such small amounts of gluten that the threat of cross contamination was an issue.

And I didn't know there was any such thing as corn gluten.

Thank you guys for mentioning us. Yes, we do offer gluten free buns from Annie May's every day for a small up charge. We always recommend people avoid the fries and Brussel sprouts if they are really sensitive because they have a high possibility of contamination but the kale salad is a delicious gluten free option. Obviously our beef is gluten free but our veggie burgers are also safe. My husband Jesse's brother who has celiacs as well as Annie here have both eaten numerous times without issue. We also offer several gluten free cider and beer options. And there are all kinds of random allergies. I was 25 before I realized why I didn't like glazed doughnuts, cake icing or Chinese food. It's because it was making me sick. I'm allergic to corn starch. Not corn, or corn gluten or corn meal - just corn starch. Now that doesn't mean I won't sneak a bite here and there but the consequence is headaches and nausea for the rest of the day.

Yes, I agree with Liz, there are random allergies everywhere. Generally, people with food allergies don't only have one. Food allergies tend to come in multiples. Also, the longer it takes to be diagnosed with an autoimmune disorder like Celiac disease, the more damage it has probably done to your body. This damage leaves you susceptible for developing lots of other health issues, multiple food allergies just being one of many.
Children have a much greater chance of "growing out" of their food allergies as their immune systems get stronger. Adults, unfortunately, already have the immune system in place, and if we develop these allergies and sensitivities as adults, there is almost zero chance of getting over it. Since my Celiac diagnosis at 31, I have reacted to 8 other foods that are totally random. I am a restaurants worst nightmare, I know. I rarely eat out even though I am obsessed with all things food, because the chance of actual death is very great. Still, people invite you to their birthday dinner or their house for a cookout or you have a business meeting, so you can't avoid the restaurant scene.

My niece has celiac diease and suffered horrifically with it before diagnoised. Now she manages pretty well. She says she's never read as much in her life as she did after she was diagnoised. Labels labels and more labels. And gluten seems to be where you might least expect it. I can't remember which candy bar my niece loves so much (I think it may be Reese's cups) so she was pleased to find out that while the milk chocolate variety has no gluten, the dark chocolate variety does. Why I don't know. She never assumes anything anymore.

Since we have broached the subject - have you noticed that more and more people are being diagnoised (by a real doctor as Steve says) with celiacs? I'm talking about those with severe reactions to gluten not just an assumed lifestyle or food preference. I'm wondering if it's because of the GMO products that are now out there. I know tomato plants are genetically spliced with haddock genes to make them more cold resistant. I wonder what eating those tomatoes does to someone with seafood allergies? What's happening to our wheat?

I know just enough about gluten from food podcasts to really show my ignorance, but I was under the impression that wheat flour required hydration and mixing or kneading to form gluten molecules. Are folks with celiac disease actually sensitive to glutenin and/or gliadin, and just say "gluten" for shorthand?

Just curious.

Jeff- You are correct, we just say gluten to shorten it. Celiacs react to the proteins whether water is involved or not. If wheat flour, barley, malt, or rye blows in our eyes, we're sick. Some, including me, even react to gluten in shampoos, toothpaste, make up, etc and break out in a terrible rash or hives. The bread aisle at Kroger makes my eyeballs burn and my nose run, which sounds totally ridiculous but it really depends on your sensitivity level. It also seems that the longer it is removed from the diet, the quicker a person reacts to less and less gluten with each exposure.

And Carla, there is still a lot of debate about GMOs, etc. I personally think it's just more awareness by doctors to do the blood test. It's easy to do a blood test, but I was misdiagnosed with ten different illnesses from about age 4 to 30. My mother was hospitalized and tested positive in the hospital or I would have never even heard of Celiac disease. It tends to be genetic, so I got tested. A gluten free diet has solved nearly every issue I struggled with as a child through adulthood. It is A LOT of work and planning, so people really struggle to stay on the diet sometimes.

I have become much more aware after my cousin suffered misdiagnosis for years before learning she had celiacs. And although I gave my mom a lot of grief for her dietary changes (she has sensitivities to gluten, eggs, and dairy) the problems that had been plaguing her for years have all but disappeared and she's on no meds for anything at the age of 67. She had inflamed intestines that were causing a lot of distress, blood sugar issues, etc. I learned that anti-caking agents can be made with wheat, soy sauce (already mentioned) and so many dry rubs for cooking. Allegra marinade is gluten free and fantastic for the home cook. As far as el Mundo goes, the shredded cheese used contains potato starch as the anti caking agent. Lots of options at our restaurant, only the green chile sauce is started with a roux. Unless corn allergies come into play, we are a great option.

The Greater Louisville Celiac Chapter has restaurant links on their website, as well as other resources. They even appear to to meet-ups at restaurants.

I wish her well on her new diet and she can come have lunch with us anytime.
-Annie May

Annie May,

My lovely bride was very excited to read your post and we are looking forward to getting in to sample your wares in the next couple of weeks.