So You Wonder About Having Celiac Disease

I have had a number of emails since my posts about celiac disease/gluten intolerance. I am not an expert, but I can tell my experience, and mostly point y’all in the right direction to find more information. There are the links at my sidebar under ‘The Gluten-Free Life’, and I offer more below. Here are some of the questions:

  • I’m wondering if I should try the diet. How does one find out if they have celiac or gluten intolerance?

The best place on the web I have found to explain about the testing is at the University of Chicago Celiac Disease Center. This is the only place where I have seen they actually talk about error rates in the testing. You can read more about testing at  Enterolab, and at the Gluten Intolerance Group (GIG). There are a number of places on the web that does the gene testing; you can do a search for that.

Rant: If your doctor pushes aside your concerns, tries to tell you that celiac disease is rare, or simply knows nothing, he/she is ill informed. Find another doctor. You deserve good treatment. That was the hardest thing I had to learn during my own journey to find answers.

  • What is the difference between celiac disease and gluten intolerance?

There is a great educational bulletin on gluten intolerance at the GIG site.  Celiac disease causes damage to the gut and malnutrition; gluten intolerance makes you ill without the gut damage, but does affect many organs. As far as I can tell, the results are the same: you get really sick.

  • What does a gluten-free diet require?

You can eat no wheat, barley, or rye flours–no standard bread, pies, cakes, noodles, nothing containing these items. No gluten, not even microscopic amounts.

It is not as hard as it was nearly nine years ago when I started. Go through your kitchen and read labels on what you eat. Today, thanks to manufacturers and new labeling laws, it is so much easier. Wheat must be identified in products, and some manufacturers voluntarily list their products as ‘gluten-free’. Some also volunteer if the product is made in a gluten-free facility. I rarely buy products unless it is a total gluten-free facility. Have you seen how flour flies in the air?

Do be aware that there can be gluten in vitamins, and that for some people who are super-sensitive, gluten in things like lipstick can cause problems. I have to be careful about my grandchildren having eaten gluten foods and coming in with gluten crumbs and grease all over their hands and getting it on me and the table, etc., anywhere I might pick it up. Oh, and kissing– yes, kissing.

  • What do you eat?

I have found the major foods that I like and stick with them–plain meats cooked with plain herbs and seasonings, not pre-packaged, fresh and frozen and canned vegetables, fruits. Eggs are gluten free. We enjoy the Wal-mart brand sausage; Wal-mart lists gluten-free on much of their house brands.

Only gluten-free breads, cakes, cookies–there are many good ones. My favorites are Kinnikinnick Sunflower-flax bread toasted, with thick jam, Kinnikinnick carrot muffins, my own baked goods.

Many celiacs diagnosed late in life also have trouble with food allergies. I am somewhat intolerant to dairy and soy. Until I eliminated these from my diet, I continued with deep fatigue.

There is a wealth of healthy food out there, and getting better all the time, because manufacturers are aware of this growing allergy problem and are producing more and more foods naturally without gluten, dairy, or soy.

  • Should I try the diet and see what happens?

Oh, boy, this is a big controversy. Read the info on the links provided. That said, I initially found my own problem by trying the diet, as did a dear friend and thousands of others, many parents and spouses of confirmed celiacs. My radically good response to the diet showed me a definite gluten problem. I did pursue more care with traditional medicine, and eventually confirmed for myself with the gene testing. Personally, I think if you are an older adult, simply try the diet for two weeks. If it helps, keep on. This is what my husband has done. He eats mostly gluten-free, enjoying gluten on rare occasions. Be aware that one cannot do conventional testing for celiac if one is following a gluten-free diet.

  • What is the most difficult thing about the diet?

For me it is eating out and traveling. I, still, have trouble asking for what I want and need at restaurants, and too many instances where the restaurant people don’t fully understand the need for no cross-contamination. I’m impatient when on a driving trip, don’t want to take a lot of time to stop. I have too many times felt ill when trying to eat at a fast food place; it is easier to bring my food, and I get tired of this. As Denise commented in the previous post, I have mostly given up visiting other people’s homes. I have too often ended up ill when coming home, and it takes days to recover.

  • How can I help my family member/friend who has just been diagnosed.

My friend Nola posted about cooking for her celiac cousins. This display of love made me teary. While I have experienced too much ‘food trauma’ to feel comfortable for people to cook for me, I am always greatly appreciative for people to understand and want to accommodate me. Quick story: I did a phone in order to an Outback Steakhouse, which has a gluten-free menu.  A few minutes later, a staff member called me back, saying with true concern, “We are uncertain of this? Can you have this? We don’t want you to get sick.” I cried, yes, I did.

The greatest thing any of us can have is acceptance, support and to be welcomed. Let’s pass it on.