These folks are sweet and unassuming. They aren't pushy or obnoxious, but in each case I've heard some pretty awful stories of things they've had to deal with in regards to this glitch in their immune system. Some of these experiences were stories of the horrors of how their bodies deal with gluten, and some were accounts of insensitivity from other people who jump to conclusions, or simply suffer under ignorance of how to deal with their issues.
Three of these people have expressed repeatedly that they don't want to be jerks about their disease, or make anyone uncomfortable. The other two are children, who really are at the mercy of the adults who care for them, and don't have much say in any of it.
Because these are all people I love dearly, I am going to be their voice for a moment, and try to shed some light on this odd, seemingly new issue. So, bear with me for a moment, as I put myself in their shoes and speak a bit more boldly than they ever would.
1) Gluten makes me sick.
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I'm sure by now you've heard horrible accounts of children who have died from peanut allergies. Well, even though gluten isn't going to cause me to go into anaphylactic shock, it really does make me sick. A few of the more frustrating symptoms are joint pain, diarrhea or constipation, gas, vomiting, and abdominal cramping. This is just the tip of the iceberg. Just because I don't tell you I'm not feeling well all the time, doesn't mean I feel great. It just means I'm sensitive enough to the people around me not to announce when I have a massive bout of diarrhea.
2) It's not in my head.
There are a myriad of recent studies claiming that non-celiac gluten sensitivity is either a psychological condition, or so rare that it belies the volume of people who claim to have it. Please realize that just because I haven't been officially diagnosed with celiac disease doesn't mean I don't have it, and just because lots of people are self diagnosed as NCGS doesn't mean they aren't celiac. The current medical procedure for diagnosing celiac requires that the subject must eat the equivalent of 4 slices of bread each day for a minimum of 1 month, then undergo an endoscopic biopsy.
Let's think about this for a moment. If you knew that eating bread gives you massive abdominal pain and nausea, would you be willing to eat it for a month, then have a piece of your intestine cut out and analyzed just so you could tell your obnoxious friends and family that you really do have the official celiac disease? I know I'm not willing to do it. So although the number of folks with the official diagnosis is really low, I'm guessing that a lot of us probably do have celiac but aren't willing to be put in the medical record book if it means a month or more of intense pain.
One more thing. If it's all in my head, why in the world would I have sudden and intense issues within an hour of eating something I thought was safe, only to go back later and discover that there was gluten in it? Seems to me that "all in my head" should mean that I could eat gluten and, as long as I was oblivious, it wouldn't affect me.
3) I don't need you to cook for me.
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I will make sure I get enough food for myself or my gluten sensitive child. I don't need you to bend over backwards to try to cater to me. If there is a naturally gluten free option on your menu I will gladly partake of it. Otherwise, it's ok. I don't feel slighted by your decision to put gluten in your food. If you invite me to a party, I might ask to use your microwave to heat up a frozen entree for my child. I won't feel left out or make a big deal about not getting a slice of birthday cake, and you certainly don't need to add the extra expense of buying a gluten free cake just so I can have some.
However, if you do decide to cook for me, please make absolutely sure it really is gluten free. I will ask before I eat it, so if you tell me it is, be prepared for my barrage of questions about ingredient lists and cooking methods. And, please don't be offended if I end up not eating your gluten free dish. There have been so many times something was given to me that was "gluten free" and then later felt like I had food poisoning.
This leads to my next point:
4) Before you tell me something is safe, here is a quick list of things you can look for.
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Wheat (including wheat berries, durum, emmer, semolina, spelt, farina, farro, graham, KAMUT® khorasan wheat, einkorn wheat
Rye
Barley
Triticale
Malt (including: malted barley flour, malted milk or milkshakes, malt extract, malt syrup, malt flavoring, malt vinegar)
Brewer’s Yeast
Here are some sneaky offenders you may not have thought of: Soy Sauce, that little bit of flour in gravy, the vermicelli pasta in rice'a'roni, most thickening agents, and beer. That's right, even putting a little beer in your pot roast to make it more robust is going to screw up my digestive track.
But again, let me say, I don't need you to cook for me. I really don't mind bringing a snack, and there are lots of foods I can safely eat. All vegetables are safe, all fruits are safe, all meats are safe, all natural cheeses are safe. I can eat yogurt and ice cream (unless it has cookie dough in it), cheesecake without the crust, corn and rice products, and any nut. I may skip the brie wrapped in a puff pastry, but I can certainly enjoy the cold cuts and pickle tray. I'm even willing to bring a gluten free treat to your party so you won't have to do all the cooking yourself.
and finally,
5) Please respect me
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Even if this whole gluten sensitivity thing is a fad, even if scientists find out years from now that it wasn't gluten that was causing the problem. Even if you read an article saying it's all in my head. Even if you heard from a reliable source that it's really just yeast that causes the issues. Please don't patronize me, or try to convince me that I'm wrong. Keep in mind that you might be really convinced that I'm missing out on life because I'm believing a lie, but you need to respect the fact that I live in my body and I know what makes me feel sick and what doesn't.
If you knew someone who had undergone an injury and was doing physical therapy and their therapy was going great and you had this very strong belief that they were psychologically clinging to their walker when they really didn't need it anymore. Your strong belief doesn't give you the right to take away their walker or try to trick them into not using it anymore.
Finally, you don't get to choose what my kid eats. Perhaps it's not me, it's my child. Perhaps you don't like it when I won't let my kid eat a piece of birthday cake with the other kids. You need to come to peace with the fact that it's my child. I have to deal with their vomiting later. I have to deal with their hyperactivity. I have to clean their soiled underwear after a bout of diarrhea. I have to snuggle with them and stroke their aching tummy long after we've left the party where you thought it would be ok to give them a bite of cake because you thought you knew better.
Note: my primary source of information for this blog was taken from Celiac.org. If you would like to learn more please check out the wealth of information on their page.
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