I don’t think I’ve talked about this specifically, but I’ve been wheat free for over three and half years.
I was having some odd issues where my face would get very flushed and hot, so hot that it would turn beet red and I’d have to hold ice-packs up to my face to cool down. My ears would get so red they would turn purple. I would get agitated and jittery, uncomfortable, wired like I was on no-doze (or I assume, since I’ve never taken it). I thought that this was happening randomly, and my first inclination was to see my gyno because it sounded like a hot flash to me. But my gyno felt I was too young (38ish) and my blood work didn’t scream hormonal imbalance, so they ruled it out.
One day, I was sitting down to lunch. I was having cous cous–which I love–with melted cheese and cottage cheese on the side. This was a normal lunch for me. I’d make a big thing of cous cous at the beginning of the week, then eat it for lunch because it was easy to reheat and tasty. So I was sitting there eating, and within about twenty minutes, I realize my face is getting hot. And as I looked back, I realized I’d been eating a lot of cous cous–which is all wheat–and that my hot flashes seemed to be happening after I had eaten. Sometimes it would be while I was eating, sometimes it would be within an hour of eating.
I immediately stopped eating things with wheat in it. Lo and behold, the hot flashes began tapering off. But not completely, which had me disappointed and confused. So I began researching wheat free and gluten free diets…and I realized I’d probably been eating things with hidden wheat in them. And likely every time we ate out, I was eating wheat in things I didn’t think had wheat in them. I got serious about going wheat free by limiting the things I was eating to things that were entirely free of wheat. In some instances, I would buy gluten free items because even though I didn’t think I had a gluten issue, it was easier to feel confident that I was buying things without wheat when they said “gluten free.”
The more consistently I was able to stay wheat free, the less I was having what I considered to be an allergic (histamine) reaction.
And not one doctor believed me.
To this day, I’ve yet to have a doctor believe me when I tell them this story. They tell me the reactions I had did not link up with wheat or gluten intolerance. No stomach issues, no skin issues, no “proper” gluten intolerance. And I try to explain again that we’re talking about histamine which means the reactions are more allergy than intolerance…and I get a blank stare. At one of my most recent visits with my primary, she said, “I’ll go ahead and test you for celiac, just so it’s on your record.” I tried to tell her I’ve been wheat/gluten free for 3 1/2 years, so there won’t be any antibodies in my system to show up on the test. Blank stare. “I’ll request the test” was all she would say. I didn’t ask for it, I knew it was a waste, but she did it anyway. It came back negative. What a surprise.
Eating out with gluten issues is a pain in the ass. If you can find a place that even offers a gluten free menu, or gluten free options, they are…plain. No sauces, no spices, no flavor. Sure, order the chicken entree, but expect it to come grilled without anything added to it. Veggies? No problem, but ask for them without the butter sauce. Rice? Plain. Potato, baked. No gravy, ever, when you are out to eat. Sadly, some spices have a wheat base to it and it’s doubtful the restaurant even knows…so don’t bother to ask. Want something fried? Nope…because it will always be fried in a fryer that has had batter in it. That almost always means no french fries. Are you one of those people who love them some appetizers? I do. Enh, nope, thanks for playing! Appetizers are generally almost always fried in some way, and that means either breading or the dreaded shared fryer. Chinese food fan? This is the end, my friend. Everything has wheat in it, or it has soy sauce in (or on) it, and soy sauce always has wheat in it (unless it’s special no wheat soy sauce…and in general chinese restaurants won’t have that). Teriyaki sauce is made with soy, which has wheat. Watch out, even some BBQ sauces have wheat or soy.
We’ve found a small grouping of restaurants where I can go and get food on a gluten free menu. The majority of them are as described above… plain food, no sauces, no flavor. It’s disappointing and frustrating. For a very long time I didn’t bother to eat out at all, which is a big change for me. We used to eat out all the time. I still have envy issues that my hub goes out for lunch pretty often and I don’t get to. But luckily we’ve found ways and places where I will go out to eat. A local Italian restaurant offers a gluten free menu that has a couple of things I will eat. Our local PF Chang’s has a gluten free menu and there are a couple of items I will order when I have a craving for Chinese food (it’s as close as I can get unless I attempt to make it at home). We found a completely gluten free restaurant in a nearby city that we tried…which was interesting but not great. We can go to Outback steakhouse, but I can’t have my beloved bloomin’ onion (waaaah). We can go to our local diner, but I’m careful to order a plain steak, which is so damn boring. I guess that’s my end result of eating out…most of the time it’s boring. I go when it’s an occasion, and expect that it’s just going to be blah.
Recently, a friend came to us and said, “A relative is going gluten free on doctor’s orders…can you give us any suggestions?”
In the 3+ years I’ve been gluten free, things have changed dramatically. More companies are making and advertising their foods (in the grocery store) as gluten free. Baking flour is being made with gluten free mixes. We’ve found fresh pasta and real (“fresh” vs frozen) gluten free bread. The grocery stores went from tiny gluten free sections, to expanded sections, to integrating gluten free foods in with everything else as if they were “normal” foods. It used to be we went to a local small-time organic hippie grocery store (read: expensive) to find gluten free items…now we can go to the regular grocery and find almost everything there in some capacity.
As I was telling the friend about the options, I realized how much more is available for gluten free people. It’s not spectacular, but in comparison to just three years ago, it’s a lot better. And on top of that, we are just as likely to try making things on our own here with gluten free ingredients…we try things on our own more often than we used to. Some successful, some not. But hey, we’ve fried chicken and chicken nuggets. I’ve made sweet and sour chicken (fried with corn starch and also fried with gluten free breading), and we tried to make the fried beef but that was only okay. You win some, you lose some. We continue to learn and find new items and recipes to try. It does mean that we have to do more work on our own and when we’re tired and don’t want to cook? We have less options…but so far we’re surviving.
*If you are going gluten free or wheat free, always always always read every single label before you buy or eat something. Just in the past two weeks, I was out and saw an individually packed Twizzler. I thought, woo, that’d be fun to chew on. Picked it up and idly looked at the ingredients… wheat. What the fuck? Wheat in a Twizzler? Goes to show, you have to read everything and you cannot trust any restaurant that doesn’t have an allergen menu specifically indicating wheat in their ingredients…otherwise you are taking a chance of getting gluten’d (or wheat’d).