That's so neat that you work with food intolerant people. I wish you lived nearby...
The following is a run down on celiac/gluten intolerance for anyone who might not be experienced in cooking gluten free. I'm sure you know this backwards and forwards, psywise.
This got kind of long, but some people may be interested in the differences and similarities between celiac and gluten intolerance. BUT, I do have some more thoughts on the spelt thing, so if you want to skip my monologue on celiac, skip down to the line of dots ................. and this will be a much quicker read.
I'm also technically gluten intolerant, but my reactions are so immediate and severe that I call myself celiac, especially when ordering food. My body reacts to gluten not only by attacking my digestive system, but also attacking other systems of my body. By the time I was diagnosed I could barely walk and was on my way to a wheelchair. The mobility issues lasted for almost three years. The GI issues for 18. When I went gluten free it all went away within days. The only time I get any of those issues anymore is if I get accidental exposure, even from cross contamination.
The reason I'm considered gluten intolerant on the paperwork at my doctor's office is that my blood tests were negative (one was borderline, but still considered negative) and my biopsy was negative. If your biopsy is negative you technically don't have celiac. This is complicated by the fact that the intestinal damage from celiac is patchy and microscopic. A definitive diagnosis of celiac can be difficult to pin down because there's no way to know exactly where the damage might be. My doctors told me that if someone presents like me, with negative tests but positive dietary response, they diagnose the patient with gluten intolerance, but in their minds they consider us celiac and follow our progress and blood work just as if we had positive tests.
Also, in order to have positive blood tests, a person with celiac disease needs to be eating the equivalent of 3-4 slices of gluten bread a day for 3-4 months to even get a positive blood test. That's because the blood tests detect the antibodies against gluten. If you're not eating enough gluten, you're body isn't making enough antibodies to be detected by the blood tests.
By the time I had my tests done I was so sick that I was barely eating anything. There was no way I had been eating that much gluten a day. Which is one of the theories my doctors have as to why my tests were negative.
So sometimes gluten intolerance and celiac mean the same thing. I've met tons of people that are in the same boat as I am as far as gluten intolerance vs. celiac.
Hopefully someday soon there will be more classifications to make this more clear for people.
This is how I consider it -
- Celiac (self explanatory)
- Gluten Toxicity Syndrome (just a phrase I made up because my form of "gluten intolerance" is obviously not something that can be taken any less seriously than celiac)
- Gluten Sensitive - Someone who can pick croutons out of their salad with no reaction, or eat take the bun off their own burger. Basically someone who can order something with no instructions to the chef and no mention as to food prep. Atkins, if you will.
- Gluten Free for weight loss. If someone who was just wanting to lose weight insisted on special prep from the kitchen, I'd kick them in the shin myself.
Basically unless someone is so sensitive to gluten that they really get sick from it, they should order their food, not eat the bread, and not bother the kitchen staff.
Really, the responsibility to inform a chef about a food intolerance lies with the person with the intolerance. I always say that I'm celiac, because with my level of sensitivity I may as well be.
I'm basically like a canary in a coal mine with gluten. I react within 15-30 minutes, and am sick for about 3-4 days, trouble walking and the whole nine yards. So my gluten-radar is pretty atuned. A gluten reaction for someone with celiac (and super-intolerant like me) is like having food poisoning and a hangover at the same time. It's really brutal, and a lot of people have to call in sick from it for a day or two.
The spelt thing is interesting. I've been reading some medical journal abstracts of celiac studies of different varieties of wheat (like einkorn, kamut and spelt) which have a more delicate gluten structure. No real answers yet, but they're looking at it in the hopes of safely expanding the gluten-free diet.
I've always been told that spelt is just as harmful as wheat, but I've never tried it. Up until several years ago, vinegar was thought to be harmful, but now, with some exceptions, we know that most of it is fine. So who knows what the final answer will be with spelt?
It's possible that the actual spelt itself is gluten free, but may be contaminated with modern wheat in processing. This is part of the problem with oats and gluten. Although some celiacs are also intolerant to oats, it turns out that for many celiacs oats are fine as long as they are processed/transported/packaged in a gluten-free facility. Quaker oats are so contaminated with wheat that they're very unsafe for celiacs. But there are a couple places in the US who sell GF oats now. Maybe something similar will be found with spelt.
Based on studies on blood from the general public in the US (in cooperation with the Red Cross), they have found that 1 in 133 people in the US has blood-test-positive full-on celiac. Only 2% of them have been diagnosed, but that's quickly changing. So there is going to be a huge increase in the need for gluten-free food in the next few years. The National Institutes of Health has launched an Awareness Campaign on celiac. If you google Celiac NIH, you can get more information on it.
Well, that's more than enough from me tonight. If anyone has gotten this far, I appreciate your stamina. :D
Loving my gluten-free life.