I wanted to comment in my blog on bad stuff that has been happening to me since I found out in February 2013 that I have celiac disease. I use the usual sort of personal care products like soap, shampoo, moisturizer, lip gloss, etc. and keep finding that some of them have wheat in them. And then I eat foods that I never even think of wheat in connection with but find they have wheat as an ingredient! It is very easy to forget to check and next I know I am feeling just terrible. Wheat is in many things that I just don’t expect it to be found in.     

Foods like Campbell’s soups including the basic tomato have wheat as a thickener and chicken broths for the most part have wheat products in them. Many seasoning mixes that you buy in a spice jar have wheat included. I got sick this weekend from some rotisserie chicken bought at Weis Market. Barbeque sauce, soy sauce, oyster sauce and a host of other sauces contain wheat, even my Japanese mirin sake for stir frying. Some wheat products have odd names or are by-products so if you are not wary you find that wheat has crept into what you are consuming….     

The issue of personal care stuff is particularly devious.  You don’t have to ingest them just use on your skin and you get sick if there is wheat in them. There was that facial moisturizer from CVS; definitely wheat: I got sick on July 4th from it. No wheat product on the ingredient list either. I had a skin cream I loved; full of wheat – had continued to use it for a while before realizing it contained gluten. My sister says her bathroom liquid soap has wheat in the ingredients; she is getting another kind for my upcoming visit. Sadly, personal products like soap, makeup, moisturizers and the like don’t have to even mention wheat as an ingredient. So you often can’t tell you have been glutened until you feel ill after using them. That makes buying many things at the drug store very chancy. I now hesitate before replacing anything I use on my body unless I am sure it will be safe.

That brings me to my third point. I have been wheat free a bit over five months so I am just learning all this stuff. I used to scoff at the idea of getting sick from a touch of wheat. I thought I just needed to avoid it as an ingredient in my foods like no more wheat pasta, no barley soup and no wheat or rye bread. I now know better, that any tiny bit of wheat has the real potential to make me feel terrible. So I understand that it is hard for those who are not suffering from a wheat allergy to understand how pervasive it is and how important eating gluten free is to the health of a celiac sufferer. Hence this posting.

Now on to general politeness…. I read snarky comments by people implying that I have horrific diarrhea and other socially unmentionable symptoms! It is really rude to make such insensitive comments. The reality is that there are over 200 different reactions that people with celiac have to gluten. It is a severe allergy but people have a wide variety of reactions. I personally feel a burning pain over to the right of my stomach where my small intestine is, I feel exhausted to the point that I sleep for hours and I am very thirsty and somewhat nauseated. They are real symptoms, not imagined and I have them every time I ingest gluten by accident. Other people have their own, very real, symptoms and people should not minimize or mock them as I have heard in the past months. Celiac disease is a severe allergy to all gluten products. It is not an optional choice to avoid wheat. It is vital to good health as gluten can cause a wide variety of severe health problems for celiacs including cancer.

Don’t be ignorant in how you treat people with allergies like mine. These allergies are real problems and we celiacs deserve polite verbal responses and well thought actions that will help us avoid a health crisis. It is not a minor thing for us nor is it fair to say we celiacs should never eat out! Every one needs to celebrate once in a while for someone’s birthday, or at a wedding or such. We all have reasons why we are away from home and must eat in a restaurant.

So if you are a waitress, chef, salesperson, restaurant owner or otherwise come into contact with individuals who advise you of their wheat allergy or say they have celiac disease, please take that seriously and do your utmost to give them what they need, a safe meal with no gluten what-so-ever in it. Even a tiny pinch or dusting of flour can make them sick. If you sell skin care items or other personal care products, know whether they contain any gluten so you can answer questions like the ones I need to ask. I don’t ask to be a pest, I ask because it is very important to my health. Plus, now you know how to treat someone in your family if they are diagnosed with celiac: with extra care and with understanding of the serious nature of their illness.

People who have celiac deserve to be treated respectfully and with real concern for our need to remain wheat free. It is not always simple to do but is very important for our health. So be kind, be careful and be polite to anyone with a serious allergy like I have. They will thank you for your caring – you will feel good that you did the right thing and helped them maintain a difficult but necessary diet.

Originally posted in July 2013.