Gluten Free Frustration

[Iluvaceliac]

My boyfriend is undiagnosed celiac. For him gluten brings on symptoms of an e. coli infection and even one microscopic crumb brings on an attack. He's been this way since childhood, but only figured it out 4 years ago. He is now eating the same gluten-free foods everyday and has limited himself greatly on variety due to his budget. Once in a while he treats himself to gluten-free ice cream or gluten-free brownies that say "gluten-free" on the package. He has sensitivity to lactose, vinegar and acidic foods so he avoids them too (the effects of those are a lot milder). Every once in a while, he gets a full blown gluten attack, but we can't figure out from what. Everything he buys is gluten free. If in doubt, he leaves it out. He cleans the kitchen himself (even does all my dishes *smile*) and he washes his hands before putting them anywhere near his face. He typically eats away from other people to avoid contamination. Its frustrating because we just can't figure out what's going on. He ate nothing different today than any other day, yet he's having a full blown attack. Any ideas?

[rosetapper23]

There are probably a number of reasons, but I'm just going to take a stab at one of them. Recently, I learned that people with gluten sensitivity or celiac can develop cross-reactions to other grains. From what I understand, after being "glutened" or even right after you're diagnosed with one of these conditions, your body's immune system kind of goes whacky and begins to attack grains that don't have gluten in them because their chemistry is similar. Sometimes, if you remove all grains from your diet for three months and add them back in one at a time, supposedly your body's immune system will have quieted down enough to ignore them. However, some people on this forum have stated that they continue to have sensitivity issues involving other grains even after three months. Anyway, this is just a thought. I'm sure others will chime in with various other possibilities, too.

[T.H.]

Don't know if this is the reason, but here's what we have discovered while trying to figure out why myself and my daughter were both still reacting while on a gluten-free diet.

1. gluten-free food is not actually free from gluten. It's 'really, really, really low gluten.' Basically, the term gluten free defines what the maximum amount of gluten allowed is, and that is more than zero.

2. If you are in the USA, there IS no law regulating gluten free food. Some gluten-free companies test their products, have gluten-free equipment lines, and try to keep them as gluten free as possible, and are usually safe for most celiacs. But some companies don't test their products at all, don't have gluten-free equipment, and pretty much just 'don't add gluten on purpose' and still call their products gluten free, even if they are probably often contaminated with gluten. If there's no testing, a company might have a safe batch one day, and a contaminated batch the next, and we have no way of knowing. Essentially, without regulation, all gluten-free products are definitely not created equal here.

3. And lastly, among celiacs, there seem to be people with varying levels of sensitivity to gluten.

What this added up to for my daughter was that some gluten-free products were safe, and some made her sick.

Two things helped us.

- We dropped a lot of processed foods and went whole foods: veggies, fruits, and whole meats. We dropped our gluten-free grains for a while (they are sometimes contaminated above safe levels, unfortunately). Nuts, beans, seeds, and dried fruit are often processed in facilities that process wheat, so they were tricky to find, too.

- Anything we didn't drop, we called up and checked the gluten free status of (even oil and salt). If a food isn't tested, like most salts, we make sure that it's made safely (some salts are made in facilities that also make seasoning blends that contain gluten, for example). Sadly, we can't just ask a company 'is it gluten free.' We ask if it's made on a gluten-free line, in a gluten-free facility. If it's tested for gluten, if every batch or routine testing is done, and what the gluten detection level cut off is for the test. It's typically 5ppm, 10ppm, or 20ppm. 20ppm is most common, but my daughter seems to do better on 5-10ppm.

It's really angering how many companies say their food is gluten free, and then also say they never test it. Which makes me wonder just how they can verify that it's actually gluten free.

Also, we ask that last question, about the detection level, because it forces whoever we're talking with to know about the test. If they don't know the answer, they have to talk to someone who DOES know.

We started it at first because we were trying to find lower gluten foods for my daughter. I continued it because of the number of people who were 'sure' their company tested for gluten, but on asking about the detection level, had to come back to me and admit that their company didn't test at all. I even had someone who gave me all these details of their tests, and how often they were performed...and it turned out to be testing for allergens that weren't gluten at all.

So basically...I can totally understand how your boyfriend can eat gluten free and still get sick. Especially as now companies are realizing they can make MONEY making gluten-free food, so many are jumping on the bandwagon, so to speak, without being as careful with the food as some of us need them to be.

Although there's one other thing that occurs to me. Does your boyfriend know if he's an oat sensitive celiac? If he is, CSA certified foods will try to avoid oat contamination, even from gluten-free oats. If a food doesn't have that certification, it doesn't go to any special lengths to avoid gluten-free oat contamination necessarily (some companies still do, but you have to call to find out). I know that some foods that others eat just fine make me sick, and we believe that sometimes, it's due to oat contamination. The reaction is pretty similar to getting glutened, if not identical.

Again, these might not be your boyfriend's issues, but hope the info. helps some, anyway! :-)

[ravenwoodglass]

Are you eating gluten free yourself? If not make sure you are brushing your teeth well before kissing. If you bake with gluten flours the flour can remain airborne for a bit after baking so be careful about that. Also you may want to check and make sure any lip products or other toiletries are gluten-free to make sure you are not CCing him when you are 'close'. Some of us do develop other intolerances so do rule out a possible reaction to stuff like soy or dairy. I thought I was being CC'd a lot for a long time but it turned out to be a soy intolerance I wasn't aware of.