What’s it Truly Like to Have Celiac Disease?

What’s it Truly Like to Have Celiac Disease?

Available in Spanish language

Last week, I received an email from somebody asking how he should best respond to his girlfriend, who has celiac disease, when she does not feel well.

I opened the question to the forum and as usual, you folks rocked with your responses.

But there was one comment from Miss Dee Meanor (love the name!) which just totally captured the essence of celiac disease in a way I could not communicate as I continue to struggle with this affliction.

I was so blown away by her response that I asked her if I could make her comment its own blog post to give people a vivid portrayal of our disease.

She complied. Here it is.

So many times we look okay on the outside and no one can see the bone-weary tiredness, the aching joints, the fuzzy brain, and/or the war going on inside our bodies. We go to work when we don’t feel well because we have to. Our sick leave is reserved for times when we simply can’t function at all or for the multitude of doctor visits that are sure to arise from other complications caused by the disease.

Our “tired” when we’re glutened is not the same “tired” that you feel. There should really be a new word invented for the “gluten tired” that makes it a Herculean task just to walk through the house.

Don’t feel offended if she seems fine with people outside the home and then sick when she returns home.

We often smile and chat with people because we feel we have to. Sometimes our jobs depend on it. Sometimes we have social occasions that we must attend and don’t want to be the guest that dampens the entire occasion. (i.e. weddings, business dinners, family holiday celebrations).

When we come home we are spent physically and emotionally. It takes a toll on everyone, but especially loved ones who get the short end of the physical and emotional stick. In other words, know that we become good at smiling through the pain for others because we have to, but appreciate NOT having to do that with the ones we love. She thanks you for allowing her to feel safe enough to drop the act when she is with you. Sadly, many of us have loved ones that take offense and feel they are being treated worse than strangers.

Don’t take offense if she doesn’t want to be touched at all. Know that sometimes a gentle hug or caress can hurt. My husband loves to put his arm around my waist, but if I’ve been “glutened” I will flinch and draw away as a reflex. What he can’t see is that I feel like my abdomen is an overflated balloon. I have even looked in the mirror sometimes thinking I must look six months pregnant and am surprised to see that I look no different. The best thing is for the two of you to open the communication lines.

We actually joke about what my husband calls the “Don’t touch the tummy!” moments.

Know that advance plans are scary for us because we never know from day-to-day how we’re are going to feel. That event scheduled two months from now can’t be fully appreciated until the day before. I’ve actually been a paranoid basket case just before an event and have eaten next to nothing. We simply can’t get as excited at events on the calendar as others. It isn’t because we aren’t excited to do things with you. We are afraid that we’re going to feel horrible on that date and don’t want to disappoint you.

Sometimes things that are exciting for most people like cruises, resorts, and multiple destinations are scary for us. Buzzwords like “all-inclusive” are particularly horrifying because we’re locked in to where and what we eat . Part of the fun for any trip is sharing meals. Unfortunately, for us that becomes the biggest stress and fear. Throw in a trip where we don’t speak their language and the fear is magnified.

Be willing to be flexible. One crumb can make that dream vacation or even dinner and a movie become months of torture. One vacation in San Diego I ate dinner at one location I knew to be safe and then we went to another for my husband to eat at his favorite Mexican eatery. We still had a great time.

Be her champion. My husband is now a pro at questioning restaurant staff and talking to managers when I feel like I just can’t talk about gluten or cross-contamination another moment. He is my second set of eyes for little things like spoons being double-dipped from gluten items into the gluten-free ones. He educates others. He doesn’t ask what he can do to help because he knows I hate being an invalid. Instead he says, “Let me do that for you.”. (Those six little words say more than all the Hallmark cards ever written ;)

He takes over when I can’t function. Last February I came out of surgery and the nurse tried to give me a cracker and ginger ale in recovery. He was on it like a dog with a bone and practically slapped the cracker out of her hand.

This is the man I hope I never have to live one single day without.


Who is Miss Dee Meanor?

I am a wife, mother, grandmother, and librarian who was born and raised in Savannah, Georgia, but am now living in South Carolina. Among other things I love to ride horses over large obstacles, garden, take boat rides on the lake, read good books, sit on the beach, feed the birds, and spend time with my family (not necessarily in that order). The next thing on my bucket list is to visit Charlotte, NC, and ride on a NASCAR track with a driver. (I don’t watch NASCAR or particularly like to drive, I just like to ride in (or on) fast things and saw this experience on Groupon. Best of all, it does not require me to eat anything.)

I happen to have Celiac Disease, but it does not define who I am. It is just something I have to deal with so I can get on with the things I really want to do. I actually feel blessed to have finally put a name to what has made me sick for decades even though I miss Southern Fried Everything and really good beer. I am fortunate to have a husband who took eating gluten-free as a Top Chef challenge rather a personal affront. He is my biggest support network, my best friend, and the love of my life.

I hope that awareness of Non-Celiac Gluten Intolerance soon gets the same attention from the medical community that Celiac Disease is finally generating. I sometimes think they must feel like forgotten stepchildren, but we (Celiacs) share many of the same symptoms and understand that it is just as life-altering. We are all in the same boat and gluten is trying to sink it. The best advice I can give anyone is to listen to your body first and foremost. You can look really good on medical tests, but know your symptoms aren’t in your head. Usually by the time gluten intolerance is finally detected the damage is quite extensive. Also, if you have chronic ANYTHING, look suspiciously at gluten. Hives were one of my first chronic symptoms although my tests showed no allergy to wheat. The hives continued well into my forties. It was blamed on stress and I was prescribed Xanax. I still hived, but didn’t care. I sometimes miss Xanax.

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