Let's Get a Little Technical About Celiac Disease

This is a slightly technical discussion on what celiac disease is, as opposed to a wheat allergy.

Celiac--it sounds like a weird vegetable that might taste good in a salad. Well, that is what I thought the first time I heard of it. Silly me! Unfortunately it is not a tasty treat. It is a sneaky disease that is very hard to diagnose, no fun to have, and yet some consider it “trendy." I see people writing about it on websites discussing the wheat free or gluten free diet for them and how faddish it is. And yes, some people go gluten free for perhaps the wrong reasons. And they may feel better (or maybe not).

For some of us it is not a simple choice, but a medically necessary lifestyle change. And since there seems to be some confusion about what celiac is, as opposed to wheat allergies or simply avoiding wheat, I felt I should give a brief primer on these different problems, particularly as to celiac sprue disease, which is commonly called celiac disease.

Some people have really terrible physical symptoms and tests may find out rapidly what is going on in their digestive system with regard to celiac disease. But some symptoms can mimic other digestive diseases and doctors often misdiagnose it for years and years. Some people have terrible skin rashes which are hard to see as relating to digestive problems. A true celiac diagnosis requires the biopsy of the small intestine. There are blood tests that will show evidence strongly suggesting that celiac disease is present--antibodies in your blood that are there due to your body’s reactions to wheat ingested since you began to have celiac disease. Still, you should have the biopsy for confirmation. Unfortunately, sometimes the biopsy is inconclusive, especially if you have decided to go wheat free before the biopsy can be done.

Once you know for sure that you have celiac, you must change your diet to completely cut out all wheat products. If your disease is pretty early in its growth the total avoidance of all wheat products can reduce the presence of the damage rapidly, within even two to four weeks. Generally once you go wheat free you will start to feel better within a few weeks. The more advanced your celiac, the longer it will take for your small intestine to recover (maybe up to two years).

Some people continue to be symptomatic for years, which surely isn’t a good result. And there are those who have very few symptoms--known as "silent celiac," which is what I think was the case for me.

It should be noted that celiac is often present in more than one member of a family, so if you are diagnosed with it you should inform your family members so they can discuss it with their doctors.

The good news is that you don’t need any medicines to deal with celiac. It is a diet and lifestyle change that you will have to complete and then stick with for the rest of your life. According to the Mayo Clinic, approximately 1 in 133 Americans has celiac disease, but up to 95 percent of people with the disease are undiagnosed or misdiagnosed.

The term celiac can be confusing, as there are several types of issues people have with wheat. Some people stop eating wheat because they think it is causing problems for them including a chubby tummy, dental issues, elevated blood sugar which can lead to diabetes, allergies and so on. I have a girlfriend who feels this to be the case for her. She feels much better off wheat and has fewer digestive symptoms. But she has no diagnosis of any specific health issue that caused her to decide to go wheat free. She does eat other types of wheat family grains like spelt. Some people feel better when they switch to other related grains such as spelt or farro.

Then there are those who have an allergic reaction to wheat, and this affects their immune system. It can cause serious breathing problems, congestion, throat swelling, diarrhea or any combination of several allergy-driven symptoms. Eating wheat can make them quite ill and even require a shot of epinephrine and/or a visit to the hospital.

Celiac disease is an abnormal immune system reaction to gluten that specifically affects the small intestine. Celiac causes the flattening of the intestinal villi, thus resulting in poor absorption of essential nutrients within the small intestine. Celiac is the most severe of the known wheat allergies and requires those diagnosed with it to avoid all wheat products including rye, barley, spelt, farro and anything with the least bit of wheat in it.

It is amazing what products can have minute amounts of wheat in them; soy sauce, malt vinegar and many salad dressings are just a few. Of course you can’t eat wheat flour, rye products, barley or any other wheat family item. Beer is forbidden, which can be a real bummer for beer drinkers. I serve at Musikfest, so I guess no more secret sips behind the beer truck! Well...there will still be wine to enjoy.

That sure was a lot of information, but if you want to know more on celiac you can look on a number of websites including the Mayo Clinic’s website: mayoclinic.com/health/celiac-disease or ncbi.nlm.nih.gov, or maybe a good starting place would be celiac.com/.

If you know someone with celiac, don’t tell them they are following a fad or try to slip them a cookie. Now that you understand better what they are going through physically and emotionally in the gluten free lifestyle they have been forced to embrace you can be more sympathetic . Peace, and enjoy that slice of toast....

This post is contributed by a community member. The views expressed in this blog are those of the author and do not necessarily reflect those of Patch Media Corporation. Everyone is welcome to submit a post to Patch. If you'd like to post a blog, go here to get started.

Angie Drake February 25, 2013 at 07:56 PM
Karen, yes, it does seem that wheat is the cornerstone of our american diet. If you shop in a typical store it will appear that more than half the food items other than produce and meat counter items have wheat of some sort in them. It is nearly impossible to by prepared or frozen food items that are GF. You might want to read up on this topic. Wheat Belly by William Davis, MD is a well known and best selling book that covers the wheat ground in a complete treatment. I am currently reading it - certainly full of information on all things wheat and what he thinks we should do about wheat in our diet.... I may write more on this in a future blog but I need to read more and digest it (lol!) to the point where I can write intelligently on the topic.
Karen February 25, 2013 at 11:38 PM
I'll be interested in what you find as you dig into how and why America's waving wheat fields developed into a health hazard for some. Thanks for your research into this timely topic.
Angie Drake February 25, 2013 at 11:50 PM
Charles is so right! No one should be self diagnosing any of these ailments. You need to see your primary care doctor, get recommended bloodwork and what ever other tests and referrals they see as necessary. You should meanwhile be making yourself more knowledgeable on the area of any suspected illness. I didn't understand what celiac was and truth be told, the fiest time I was told I might have it, I laughed it off and said no way was I giving up bread. Months went by. I got sicker. You are not serving your health to the good when you don't explore all possibilities. I had to see a gastroenteroligist who put together my physical symptoms, my blood work, my other tests and my history and came back in five minutes to tell me that the source of my woes was that I had celiac disease. Until then all my doctors were pointing the finger at something which turned out to be totally unrelated to the real problem. But none of those doctors had the right expertise to put the whole picture together correctly. So, until you are sure you have the best information and the right doctor on your case, well you are possibly way off base. Celiac can be difficult to diagnose and there are a number of different gluten and/or wheat allergies and intolerances the doctor needs to consider. And my sincere sympathies on your loss of your lovely niece. How tragic a story and very sad.
Margaret March 01, 2013 at 07:24 PM
Let's hear some of the actual comments people have made on your finished wheat free products. You must use these people as unsupecting taste testers. (You know: I can' beleve it's Ragu; I thought it was Prego spagetti sauce!). Church dinners would be good test places.
Angie Drake March 01, 2013 at 09:52 PM
Well Margie, (my big sister!) I really don't intend to make unsuspecting diners at my church's suppers eat my bizarre gluten free dishes. The ingredients are expensive, I feel that each thing I make is an experiment so if I am planning to take a cake to church I think it would be far better to make one from a box and serve that to people. That said, anyone eating at my house will likely be subjected to various GF foods. So far no one has totally panned anything. But these are early days! Plenty of room for noses to be turned up at my concoctions!!


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