Why Won't Doctors Listen?

by Norman Rockwell

I recently took my 8 year old, Megan, to the Dr. because she had a very bad cough. The Doctor diagnosed Megan with bronchitis and prescribed antibiotics. Doctor and the Doll by Norman Rockwell

During the exam, the Dr. noticed Megan's DH (Dermatitis Herpetaformis) all over her legs, arms and the back of her neck.

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  Caring Doctor.: "Oh my, she seems to have broken out from the virus."


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  Me: "Oh no, that's just the DH from her Celiac Disease. She recently got into the wrong butter dish at home and ate wheat bread crumbs."


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  Caring Doctor.: (obviously, not listening) "I can give you a prescription for the excema. Perhaps I'll give you a topical antibiotic as it looks like this may get a staph infection."
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  Me: "Well now, see, she's been diagnosed with Celiac Disease and her rash has been diagnosed as DH."
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  Caring Doctor.: "Does your excema itch, Dear?" (talking to Megan)
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  Me: "Have you ever heard of DH? It's a rash specific to Celiac Disease." (I said politely)


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  Caring Doctor.: "Oh, I see this rash all the time. I have some stuff that will clear it right up." (she says as she writes illegibly on a pad)


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  Me: ~~~sigh~~~

The interesting thing about that visit is, I came away with 4 prescriptions and once I got to the pharmacy, only 2 of them were Gluten-Free. The pharmacist was able to check online for me.

Before the Shot by Norman Rockwell

In defense of this caring doctor, we live in a small rural town and she knows very little about Celiac Disease or it's complications. Three years ago, I lived in a major city and the doctors there didn't know anything either!

The frustrating thing is that they won't be taught, especially by a mother of a sick kid. I am NO doctor, but I have had to deal with the effects of this disease ALL my life. My ten children and I were diagnosed 15 years ago and I have done a tremendous amount of study; of the disease itself and the complications, not to mention the diet. I am NOT an expert in any other medical condition EXCEPT THIS!

You can see that I wish I could have said all this to her. When will the medical community take this disease seriously? When will they work to find a cure, relief from the symptoms and lobby for food that is correctly labeled?

School Lunches

I have 5 grown kids who deal with their diet and disease on their own. My two married daughters are amazingly resourceful. My son is in pre-med and I know he struggles with a horrendous school/work schedule and trying to find food-on-the-run that is gluten free.
This is my family.

My fourth child, Nicole, is also in college and has even blogged about her frustration with finding anything within her reach, that is gluten-free. See her blog entry here.

All my children have determined that they would sometimes rather live with the symptoms than deal with the diet, especially socially. Sometimes, the Celiac has to just simply choose not to eat at parties, picnics or restaurants. That is difficult. The food looks and smells so good! The Celiac has to prepare ahead, by eating BEFORE the social gathering, so that hunger doesn't overtake the moment and they don't do a face-plant into the nearest German chocolate cake.

Thus the challenge. At home, we provide GF meals for everyone and it is relatively easy. It's the school lunches that are frustrating. Megan takes a lunch everyday, usually leftovers from the dinner the night before.

There are only so many choices for hauling lunches from home for her. The best option is to send her with leftovers from our supper the night before. The problem is that most of her food has to be reheated, once at school.

At first the elementary school told me that they couldn't provide a microwave for her lunches. I then, reluctantly, reminded them that the public school system was bound by law to provide for special needs. Not only is their food NOT gluten-free, but it's sometimes not really nutritious. The kids at school describe their school lunches, humorously, as "greasy sodium"!

After reminding the school of the law, it was stunning how a microwave was immediately scrounged up. Megan now takes a lunch from home, like last night's GF Lasagne, and then she can choose fresh fruit or vegetables from the school lunch menu. This is great because she feels more like her classmates. The school lunch lady charges her a preportionate cost for only the items she chooses.

The moral is that parents should press-on for the needs of their children. I have found that the schools really DO care but they don't understand the disease or diet and just need to be educated.

Dermatitis Herpetiformis - DH

The elementary school secretary called me this morning. My 7 year-old daughter is in her office. Can the secretary spread Calamine Lotion on Megan's hands because they are red, itchy and have small blisters on them? "I'm sure it won't hurt," I say with a sigh.

Poor Megan. It seems she was born with Dermatitis Herpetiformis or DH. I have ten children, all with Celiac Disease and all with some form of DH. Some of the girls have it on their heads in their hair, back of their necks, tops of the buttocks and arms and legs. Most of them have it very mildly. The boys tend to have it right in the middle of their chests, where hair will someday grow.

This is a sample of what DH can look like on an arm.
But Megan, has had DH head-to-toe from the moment the NICU (Newborn Intensive Care Unit) began feeding her baby formula. She had a condition most of my babies had, called Transient Tachypnea, which kept her in the NICU for 2 weeks. I was told by the nurses and by the formula-makers that there is no gluten in baby formula. hmmmmmm...... I was never convinced because of how Megan reacted. She was fine when I finally put her on goat's milk. Since Megan was born to an experienced mother, I learned to give her a clean (gluten-free) diet. We have kept her DH under control so that she suffers very little. Because her skin is so sensitive, she has become the family gluten-barometer. I have treated her DH, topically, with hydrocortisone creams.

I have learned a few things about DH. If the Celiac is not gluten-free then the DH may flair and the flair could last 2 years! If every ingestion of gluten causes a possible 2-year flair, then the patient would NEVER be rash-free! We noticed that the severity of the flair was impacted by citric acid in the diet.  That has to do with missing enzymes on the villi. Check out this site for a clearer explanation of the job of enzymes related to celiac disease.When I was a child, I had severe DH on my arms and hands. In those days, I was simply diagnosed with "eczema". My mother and I discovered that it was so much more severe when I ate fruit (apples, oranges, peaches) or spaghetti, anything with high citric acid. Thus we blamed the oranges. Megan and I can now devour all the citrus fruit we want now, as long as we keep the gluten out of our diet!

Explanation of Celiac Disease:

Explanation of Celiac Disease: What is celiac disease?
Celiac disease is a disease of the small intestine. One who has celiac disease will have an immunological, or an allergic reaction. within the inner lining of the small intestine to the gluten proteins that are in wheat, rye, and barley. The reaction causes inflammation that destroys the lining of the small intestine. Here is a picture of the villi in the small intestine. These are healthy. The following is a wonderful video that explains Celiac Disease in detail. I'd like to thank the many physicians who put out this video.