Monday, March 11, 2013

Gluten, Celiac Disease, and Celiac Sprue


    There are a lot of products and hype just now where gluten-free food products are being pushed.  What is gluten ?  Why should we eat things without it ?   Gluten is a protein found in grains, barley and rye.I always think of it as the thing which "glues" bread together and provides elasticity to bread doughs and pizza crust. Gluten is a major source of food protein throughout the world, and in the broadest of terms is a beneficial thing for most people.
            However, a percentage of people** in the world, especially those of British Isles ancestry and many from Europe, may be gluten intolerant.  Mildly gluten intolerant people may have mild gastrointestinal symptoms, such as bloating, gas or diarrhea.  However, a subgroup of people are not simply mildly gluten intolerant, but they have Celiac Disease, which used to be known as Celiac Sprue.  In Celiac Disease, the patient is not simply intolerant to gluten, but they experience a serious autoimmune reaction when gluten products are ingested.   Those with Celiac Disease may experience weight gain, or weight loss, and in addition to mild, moderate or severe gastrointestinal symptoms, may also have anemia.  They may also have fat in their stools (which may be foamy and poorly digested.). They may have eczema, aching joints, headaches, migraines, exhaustion, poor stamina, menstrual irregularities, rapid heart rate, dental health and gum issues, and irritability.  Of course, these are a very wide range of symptoms which can be attributed rightly and wrongly to other disorders as well. Many celiac patients actually have a couple of disorders by the time they are actually diagnosed.
              The only real way for the body to recover, is to exclude all manner and type of gluten from the diet. This is a great deal tougher than it sounds. Conventional breads and eating out must be immediately excluded, at least at fast food locations.)  Special gluten free versions of pasta must be purchased.  In addition, a celiac diet, when purchased at your ordinary grocers is quite expensive. In addition, gluten is often an additive in foods you might not suspect, such a soy sauce, and ice cream.  The family of a celiac patient must read EVERYTHING, and even then, mistakes will be made. Gluten cannot simply be reduced in the diet, it must be eliminated completely, otherwise the symptoms will return, and the healing the body is doing without gluten will cease. Sometimes, an entire family must adopt a celiac diet.
           True celiac disease can be difficult to diagnose and is probably best done by a gastroenterologist. Even then, laboratory exams can be falsely negative.  Sometimes, a biopsy is the best way to make such a diagnosis.


          More than ten years ago, when one of our sons developed what eventually was determined to be Crohn's Disease as it evolved, we suspected Celiac Disease.  My best friend at the time, had Celiac Disease, and was a big proponent of a trial of gluten free diet, rather than a biopsy of the gastrointestinal tract. The gastroenterologist thought a gluten free trial might be a good idea. I spent several hundred dollars and over a couple of weeks transitioned my son to a gluten free diet.  Back ten years ago, gluten free products were more expensive than they are now, and are harder to locate.  Gluten free products were less common then than they are now.  It was hard work, and at first we thought my son might be a little better.  Unfortunately, we kept the gluten free diet for nine months. It was not the cause of his issue, and he deteriorated and lost a dangerous amount of weight on it.  However, I have seen people for whom it is an issue, return to excellent health when gluten was an issue for them.

          Today, Celiac Disease is being diagnosed more competently than it was then, and most stores are selling truly gluten free foods in a special section.  Augason Farms also sells an entire line of preparedness foods, some of which is freeze dried for those who must not have gluten.  For this reason, and others, a gluten free diet is less expensive than it used to be.  In my county, there is a bakery which is exclusively gluten free breads, cookies, rolls, birthday cakes and cupcakes. To me, their wares look delicious but lack texture and taste, but I am sure to someone on a gluten free diet, this is a wonderful change. The bakery has flourished during the recession and almost never has parking places !
         Unless you are a patient with Celiac Disease, excluding gluten from your diet is unwise.  When gluten is unnecessarily extracted from the diet, the absence of grains may cause severe constipation. It is also my opinion than most things taste better with gluten in it, although you may disagree.
        If you are a person who eats a gluten free diet, then I am hearing that it is much easier today than it once was, and that eating in some restaurants is even possible now. The rest of us need to be aware of this issue and when people on a gluten free diet visit our home, we need to be sensitive enough not to serve them wheat bread thinking that the switch from white bread to wheat alone will solve their problem !  When my friend with Celiac Disease came to visit, we actually let her cook her own food, and on the first day, she immediately went grocery shopping here. This is certainly a challenge for the person on the gluten free diet, but something the rest of us need to accept as absolutely essential for those who are afflicted with this issue


More information:

What is allowed, and what is not, on a gluten free diet

More information, and cross contamination issues.

Scholarly articles for physicians, nurses, and anyone else:
Continuing education articles for nurses and physicians are often taken down rather quickly. If these are of interest to you, please read them and download the articles in advance of the links expiring.

Gluten sensitive enteropathy

Diagnosing Wheat Allergy: For Clinicians

What is Non-Celiac Gluten Sensitivity ?

Simple Gluten Sensitivity

Non-celiac enteropathies

The Genetics of Celiac Disease

Food Allergies

Pediatric Celiac Disease

Celiac Disease Linked to Infections in Infancy

** I have avoided stating a percentage of those on Earth who are gluten intolerant. When I was first an RN, we were taught that the percentage was on the order of 1-2%.  Now, some quote a 15% worldwide rate of celiac issues.  Like many disorders (thyroid, the autoimmune, etc.), I suspect a much higher incidence will be noted when the medical profession becomes more aware of this and better at making an earlier diagnosis.


Yasir Malik said...
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JaneofVirginia said...

Yes, it is, but it is in no way related to celiac disease, and I was a little confused as to why you might mention it in a conversation which concerns celiac disease and gluten intolerance. There is one connection though. Patients with celiac disease often go quite some time with a variety of symptoms which are not definitively diagnosed. Many times, it takes a long time to diagnose celiac disease, and misdiagnosis can occasionally be a problem. Rarely, an older person who has had asbestos exposure is diagnosed with celiac disease, when in fact the diagnosis is mesothelioma. However, this is rare with the advent of CT and MRI scans. In addition, physicians are much faster at diagnosing mesothelioma than they are at detecting celiac disease, and this is one of the reasons for the diligent effort to educate physicians and nurses more fully about celiac disease. Thanks for posting.

Kristin said...

I've read evidence of links between GMO wheat and gluten intolerance- a completely different beast than celiac. If only we would stop messing with our food like this!

JaneofVirginia said...

Interesting. Thanks for posting, Kristin.

JaneofVirginia said...

The post did not relate to the disorder being discussed.