I think, it's hard to imagine another's suffering. We're all in this alone, and together, but still mostly alone.
For some, it's easier than others to hear what someone else says is an issue for them, internalize that, and somehow, feel it, whether emotionally or even, physically.
If you're one of the ones with the gift of empathy, then when your friend or family member says, "I'm going gluten free," or "I have ___" (fill in Celiac Disease, Non-Celiac Gluten Sensitivity, IBS, Crohn's, Diabetes, Bipolar Disorder, broken leg or any of a host of other diseases), you completely understand, on some level, that they have special needs, and you know that that presents a boundary for what you want them to eat or do.
But there are some people who don't get it, unless there is something so blatantly obvious they can't miss it, like a cast or insulin injections or even one of those really cool-looking prosthetic legs (don't want to lose one of my legs, and I am so amazed by the strength of the people who have and their support teams--but those legs are a marvel to me!).
So, for those of you who just don't get it, here's a guide:
1. Regardless of the reason I have chosen to cut gluten out of my diet, you don't get a say as to how much gluten I do or don't eat. I still deserve respect, even if you privately think I'm a hypochondriac tree-hugger.
2. The reason I cut gluten from my diet really isn't your business, but if I tell you, that isn't your cue to continue to openly judge me. It's actually more polite to not say anything, although, perfectly fine to ask genuine questions about the reasons I went gluten free. Saying, "Are you sure it's not just all in your head," is neither polite nor acceptable. You wouldn't say to a person with a broken limb, "Are you sure it's not all in your head?"
3. Celiac Disease is actually more well-defined as a disease than is IBS. So, saying, "Are you sure it isn't just IBS," is really just showing that you don't know what you're talking about. IBS is not a true disease, as of yet. It is a conclusion based on a differential diagnosis. Everything else, including Celiac Disease and Non-Celiac Gluten Sensitivity, cancer, blockage, and other diseases, have been ruled out. IBS does not result in progressive disease, and it does not result in GI bleeding. Celiac Disease does.
Celiac Disease can result in death from dehydration, vitamin deficiency, and is a cause of cancer of the small bowel and esophagus.
You know when you complain of heartburn and your Celiac friend or family member nods in agreement, rather than asking, "Are you sure it isn't just all in your head?" That's because heartburn, GERD, and indigestion are all typical of Celiac Disease. Cut your friend or family member some slack.
4. Feeding any kind of gluten-containing food to a child with Celiac Disease is CHILD ABUSE. You wouldn't neglect to give insulin to your diabetic grandchild, would you? You wouldn't give your peanut allergic student a PB&J, would you?
Don't keep a Celiac child from his or her cure: a lifelong gluten free diet.
5. We think spiking a meal for your Celiac or NCGS neighbor should be illegal. You wouldn't put ipecac syrup in your buddy's beer just see if he reacts, would you?
How about cyanide? Want some of that with your meatloaf? Neither do we.
6. If we've chosen gluten free diet because we think it's a more healthful choice, and not for medical reasons, well, we'd still like to know what we're eating, as would you. If you hate beets, and we invite you to our house for dinner, we won't complain about how much of a drama queen you're being, because you refuse to eat them.
"Hate coconut? Suck it up, sunshine!" You won't hear that from us, because we understand. You don't like it, and you don't want it. Regardless of the reason, you shouldn't have to eat it. We won't make the whole meal contain coconut. In fact, that might encourage us to skip the coconut shrimp and German Chocolate cake as the main course and only dessert.
7. You may not be concerned about gluten, but the FDA is. While we admit there is corruption in many levels of government, and we don't necessarily think the regulation is as tight as it should be, we are grateful for their recognition.
8. Don't punish your GF friend or family member for being GF. GF breads and other foods cost at least double what most regular foods do, so the hit to the wallet is punishment enough. Not to mention the OCD-like checking ingredients, calling manufacturers, time spent cooking everything at home, and loss of time with friends and family due to constant fear of cross-contamination.
9. Being GF by medical requirement is not fun, because likely, we've had a long, hard road of much suffering, before we got here. The method for diagnosis isn't pleasant. Misdiagnosis is very common. It's getting better, but adult-diagnoses are only just becoming more common. Most people have suffered with heartburn, pain, joint aches/arthritis, gall-bladder symptoms, frequent diarrhea, severe constipation, brain fog and clumsiness, vertigo, nerve damage, sinus infections and bronchitis, out-of-control weightloss or gain, for 10 years or more before being diagnosed.
10. We like and respect you and your choices. Just because we're family doesn't mean we get to disrespect each other on principle. Just because we're old friends doesn't mean you get to treat us poorly. We like you, and we want to keep it that way.
12. Being GF for medical reasons is a little embarrassing. In order to avoid being a recluse, we risk eating out, but by having to telling everyone our medical condition in an effort to keep ourselves safe. We want to forget about it, sometimes, in the safety and company of the ones we love.
13. We aren't doing it to hurt you or make your life difficult. We do it to make our lives a little easier. Do you want that for us?
14. We need your support. If we don't have it, we hobble our way through life, alone, missing out on all the fun we used to have. We know you love and care for us. Let us help each other, through our difficulties.
15. "I read an article that said the guy that suggested gluten sensitivity did a study that determined that it is not real." Well, what you read was most likely an interpretation of a study done by the researcher, Dr. Peter Gibson, who helped to discover the role of FODMAPs in IBS with Dr. Sue Shepherd. Really, what the study did was took people who self-diagnosed with gluten sensitivity and tested their own hypothesis. It basically said that self-diagnosis isn't all that great an idea sometimes, although one of the study participants left because she had severe symptoms when on the gluten diet, and tested positive for the Celiac Disease genes. This study does not rule out the existence of Gluten Sensitivity, in the general population. It rules it out for these particular patients, but speculation is there that some other disease or intolerance process is going on. It's too early to determine the status of Non-Celiac Gluten Sensitivity, yet.
