Gluten, anyone?

Perhaps you have been to a grocery store or health foods store where labels reading "Gluten Free" are evident. For many, perhaps you, this seems entirely irrelevant and wonder why in the world this stuff called gluten is getting attention. Gluten is a special protein found in wheat, rye, barley, and some oats. Gluten is the material in bread that makes it chewy and elastic, and removed from bread is sticky and resembling chewing gum.

Some people cannot digest gluten; gluten will enter the small intestine and the small cilia-like villi lining and flatten it, thus hindering the ability of the body to absorb nutrients. This condition is called celiac disease, and left untreated can cause other illnesses of the body and can certainly lead to an early death.

Symptoms of celiac disease are anywhere to none to extreme pain in the intestines. Recently I visited a restaurant where the manager's wife was a celiac, and she prepared a gluten free guide for the menu. She cited statistics which I have not verified but are fascinating if accurate: 1 in 133 people have some form of celiac disease, but only 1 out of 1,100+ get diagnosed. I have some first hand experience with this.

Not long after my youngest child was born, my wife was persistently sick and would retreat to bed as soon as I got home from work. We went from Doctor to Doctor, diagnosis to diagnosis, and little to no improvement was observed. Finally, through a telephone consultation, she was told about gluten intolerance and went on the gluten diet, then everything changed. She is much better now (thank goodness) ... the diagnosis took 8 years. She went on the diet before she could be officially diagnosed, and I don;t think she will go back to gluten just to get one.

My wife learned more about the symptoms of gluten intolerance and celiac disease, and this led us to put our youngest daughter on a gluten free diet. She was constantly constipated and would have accidents in her pants regularly. Going gluten free removed this problem. She was also fussy most of the time and this went away as well. Next kid ...

My oldest child did not reveal she had stomach pains from ingesting gluten until recently. When we started the gluten free diet with her, we noticed a "Jekyll and Hyde" difference in her behavior. I mean it was drastic. While I love my daughter, with gluten in her system she is foul, offensive, and downright nasty. Off the diet she is actually quite pleasant to be around and the problems come back to the level of the everyday teenager. When she gets gluten in her system, it's pretty obvious. Several days must pass for the gluten and related effects to evacuate the body. And that's such a good time!

Child #3's problems of being tired and irritable all the time have been attributed to his heart condition (hypoplastic left heart syndrome, or HLHS), but after a stress test showed his heart rate getting into the 180s (should only be able to reach the 130s--Praise God!) we started to look at his gluten tolerance. A celiac genetics test put him at very high risk--16x greater risk of getting celiac. An EGD (upper scope) showed a burned esophagus but the biopsy did not test positive for celiac. But the GI Doctor put him on the diet anyway. The irritability has disappeared, and his energy has increased so much that this kid with a serious heart condition is playing rec league basketball (again--Praise God!). So that leaves me the sole gluten eater of the house ... or does it?

While I've never had stomachaches from eating gluten, I've had off and on (more recently on) acid reflux and bad breath since I was a teenager. My younger daughter would have the most awful breath imaginable in the mornings, until we took her off gluten. I did the genetics test and found I was 14x greater risk of getting celiac. I had an EGD done and the Doctor conducting the scope would not do a biopsy to test for gluten, but did find an irritated esophagus and gastritis. Now following the link in the last sentence, you will find that autoimmune disorders can cause gastritis ... Visit autoimmune disorders and among the list will be celiac disease. Hmm.

Doctors, like the one who did an EGD on me in early December, see celiac as rare and do not give it the attention it probably deserves. The Doctor told me, while lying on the operating table, that if I don't have diarrhea all the time then I don't have celiac. I was not interested in arguing as a snake was about to be lowered down my throat. But it's clear to me celiac disease is far too misunderstood, is not black and white, there must be more to it than the related genes which are typically examined.

I've been on the gluten diet for two weeks and I have seen improvements in the acid reflux. I'm taking only one prevacid a day now as opposed to two. I did experience some gluten withdrawal (compare to going off sugar), but that passed. I look forward to seeing if any other aspects of my health improve as a result of better absorption of nutrients over the next several months.

If you have any questions about gluten intolerance / celiac disease, I'll direct you to my wife. Hope you found this informative and helpful to know!