The Silly Yak

Why Won't Doctors Listen?

2009-04-08T07:55:00.007-06:00

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.

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

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."

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."
Me: "Well now, see, she's been diagnosed with Celiac Disease and her rash has been diagnosed as DH."
Caring Doctor.: "Does your excema itch, Dear?" (talking to Megan)
Me: "Have you ever heard of DH? It's a rash specific to Celiac Disease." (I said politely)

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)

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

2009-04-04T18:02:00.008-06:00

I haven't written much on this blog. I suppose that is because I am dealing with the issues of Celiac Disease better now, than I did 15 years ago, when we were diagnosed.

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, including 2 son-in-laws and 4 granddaughters.

My fourth child, Nicole, is also in college and has even blogged about her frustration with finding anything within her diet to eat. See her blog entry here. I think Brittany, age 20, has completely given up on her diet, which concerns me.

I still have 5 children at home. The oldest four do not stay on the diet. They have determined that they would rather live with the symptoms than deal with the diet, especially socially. Their symptoms are relatively mild at this time so I let them make their own decisions about what they put in their mouths. I make sure I educate them on the long-term consequences of their disease.

However, Megan, my 8 year old, is a different situation. She has serious symptoms; horrible DH and miserable diahhrea, gas and bloating. She can't ever cheat, on purpose, and we have to be so careful that she is totally compliant to the diet.

Thus the challenge. At home, we provide GF meals for everyone and it is relatively easy. My husband is creative and has come up with wonderful substitutions for bad ingredients.

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. She can't have sandwiches. We have often sent her with string cheese, a banana, potato chips and yoplait yogurt. This gets old 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 not really nutritious. The kids describe their school lunches, humorously, as "greasy sodium"!

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

2009-01-16T13:59:00.006-07:00

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 & 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 Transcient Tachypnia, which kept her in the NICU for 2 weeks. I had extreme blood loss during her birth and was anemic to begin with, my hematocrit being 24! I looked positively CLEAR!! The Doc requested to do a blood transfusion which I declined.

Anyway, I couldn't breastfeed, as I had NO milk! I think having my 10th child and being 41 just did me in. I was told by the nurses and by the formula makers that there is no gluten in baby formula. hmmmmmm...... I was never convinced. 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 sufferes very little. Because her skin is so sensitive, she has become the family gluten-barometer.

I have learned a few things about DH. DH intensifies when citric acid is included in the diet. 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. I can devour all the citrus fruit I want now, as long as I keep the gluten out of my diet! No rash.

Explanation of Celiac Disease:

2009-01-01T15:15:00.007-07:00

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.

Our Story

2008-12-28T11:31:00.010-07:00

When I was six years old, my father (a half Swede/half Finn) died of complications of Chrohn's Disease and Rheumatoid Arthritis. When I was a little girl I was thin, short and my stomach always hurt. Not knowing that was abnormal, I lived with the pain, constipation and diarrhea as a fact of my life. At one point, my mother had the Dr. run tests (upper and lower GI x-rays) on me, but nothing was diagnosed. I grew up, married and had 10 very skinny, short children. Right after my 6th child was born, we noticed that Brittany, age 5 and Nathan age 3 were very ill. Both only weighed 24 pounds and had severe diarrhea... the running-down-the-legs kind. They had horrendous-smelling gas. Their stomaches were bloated and they had no butt cheeks. They looked like starving kids in Ethiopia. They were covered in rashes and I fretted over their health daily.

Finally taking them to the Pediatrician in 1994 was a success this time as they were CLASSIC Celiacs. Most people with this dsease aren't classic in their symptoms so the disease goes undiagnosed, as in my case. The kid's blood tests were sent to the Mayo Clinic and alas a true diagnosis was determined. Our Doctor told us there was no cure but it would be "simple"... just stay away from and pancakes and bread!

Okay, that was such an understatement! We found that the basic American diet is 85% gluten-containing! I stood one day, in 1994, in my kitchen, crying and overwhelmed by the destruction of the disease and the large amounts of gluten in my cupboards. I emptied the kitchen out, throwing food into boxes and then gave them away to the neighbors. I was left with frozen and canned vegetables. The cupboards were bare!

After Brittany and Nathan were diagnosed, I began to wonder about the rest of us. Hadn't each of our babies struggled with diahhrea from the time they began to eat solid food? Didn't they all have continual gas and bloating and that odd rash on their little bodies? My Pediatrictian had me contact Dr. Fasano of the University of Maryland Medical Center in Baltimore to get more information. Dr. Fasano asked me to go to a local hospital and have the blood drawn on all my children and I for a genetic study on Celiac Disease that the Univ. of Maryland was doing. In return Dr. Fasano sent the results of the blood work on all of us. Incidentally, the whole family had been on a relatively gluten-free diet since the 2 kids were diagnosed but had gone back to eating gluten for a period of 3 months before this blood work was done.

The findings were so interesting to me. First of all, we ALL were found to have Selective IgA Immune Difficiency. The jury is still out on that one to know if it is associated with Celiac Disease. The next thing we found is that the younger the child, the higher their anti-gliadin count in their blood. All were positive, however, for Celiac Disease. I chose not to have the biopsies done as I felt we didn't need to be tested based on our history and positive responses to the gluten-free diet.

The University of Utah also heard about our family and came to our home to draw blood for a genetic study they were also doing on Celiac Disease. In Aug. 1997, I had my 8th child and her umbilical cord blood was sent to Helsinki, Finland where they have been studying Celiac Disease in Finnish children. I am 1/4 Finn and thus my children 1/8th. My Finnish family is from Pudasjarvi, Oulu right at the "waist" of the country.

However, the kids rallied and grew stronger on a strict gluten-free diet. Their bouts of diahhrea became less often and they gained weight. I went on to have 2 more Celiac children and I continue to struggle with cooking for them and learning exactly where gluten is hidden in processed foods.

I have often wondered why all 10 kids have it? Does that mean their father has it? What would be the chance of me marrying a man with this disease? He wasn't underweight, but obese. His mother had a horrible rash all her life. Many of his siblings, cousins and relatives either died of abdominal cancer or lymphona, had continual intestinal distress, had diabetes or had children who had failure-to-thrive problems. No one, in his family, has wanted to get tested lest they discover they may have to deal with the same diet we live with.

Five of my children are grown and still live the daily dilemna over their diet. I have 4 granddaughters. We don't know if they are Celiacs yet. I divorced and remarried in the past 3 years. My new husband is wonderful in dealing with the diet. He works hard in helping to make sure that we have strict gluten-free diets. It's a bit interesting that his cousin, Gwen, was recently diagnosed with Celiac Disease. Hmmmmmm.....

One of my children once stated, "The symptoms of the disease are easier to handle than the diet".