Parental Attitudes

Parents, family, friends, and teachers play a large role in children’s perception of and adaptation to celiac disease. These individuals set the tone and become, in large part, the enabling force that teaches children how to cope with the condition for the rest of their lives. This includes teaching children the skills needed to maintain the diet when it becomes difficult-i.e., as they grow and become independent.

Also important, children-as well as adults-absorb as much observing the reactions of the key people around them as by anything said.

Feeding their children is one of the first and most important duties of parents. It is understandable that parents may be overly concerned, anxious, and protective. Based on our interviews, it is also apparent that some parents go into denial, which may be extreme: “This is not happening to my child, at least right now.”

One mother was most upset about her teenager not being able to go to the pizza parlor. Well, what about if she can’t have a baby when she gets older and what if she has diabetes?

Another woman had a daughter about to go to college and didn’t want to test her because she felt it would be too much of a change or adjustment before she went to school. Her daughter wasn’t having any symptoms. But it’s like child abuse if you have this knowledge, how could you not? (Sue,41)

On one hand, it is important that parents learn to let go and enable their children at an early age. Conversely, it is equally crucial that parents understand that celiac disease, whose only cure is a change in what you eat, is a significant medical condition with many potential complications. Ignoring or denying its importance is extremely shortsighted. Sometimes it is the parents who must develop better coping skills.

I went to see my gastroenterologist. We used to work together about 12 years ago. It is still hard being on the receiving end rather than the giving end…. I used to do endoscopies all of the time when the docs needed the help for OR nurses just do not like to do endoscopy – me I LOVED IT! – I am an Operating Room nurse. I’ve been an RN for 19 years.

Getting back to doc, I trust him with my life. He was a little late for there was an emergency at the hospital. I was making ‘light talk’ with the nurses there at the surgicare. I let them know why we’re there and what biopsies we were getting again. I tried to have my husband take my place, he laughed and said he is there to protect me, not take my place. They gave me ‘happy juice’, so much I really remember nothing but telling my doc friend that he looks so much better now that he is not wearing his toupee’ that he wore when I worked with him years ago. He says I did not embarrass him, but the poor nurses -I am sure have not worked with him that long -gave him a look of wow!  Thought you’d like that little chuckle. He gave me my set of pictures, the boys wanted to take them to school and show them to their friends. My husband, Steve, told me how funny I was for apparently I told my doc friend many times how much better he looked…yikes. Darn amnesia effect. Hopefully I can scan the photos in…if not you’re off the hook of looking at my Esophagogastroduodenoscopy…for now.

The United Methodist and Evangelical, Evangelical Lutheran, Episcopalian, and Christian reformed Churches seem to be ok with gluten-free hosts. They say – ‘substance of the sign is in the signified, Jesus Christ, and not in the chemical make-up of the sign’.

I found a site where they can be bought or even made. I will post them here on the blog.

If you think the food is expensive…well I have been doing some pricing. Yes, a little more gets paid to those for their price of production is higher keeping us safe. AHH, but we aren’t eating a lot of the processed crap that is not good for us so it actually becomes a wash.

The only treatment for celiac disease is to follow a gluten-free diet–that is, to avoid all foods that contain gluten.

For most people, following this diet will stop symptoms, heal existing intestinal damage, and prevent further damage. Improvements begin within weeks of starting the diet, and the small intestine is usually completely healed–meaning the villi are intact and working–in 6 to 18 months. (It may take up to 2 years for older adults.)

Additionally, celiac disease often presents with seemingly unrelated symptoms, such as fatigue, joint pain, anemia and infertility, making diagnosis that much more difficult.

There are Celiac disease centers out there and they are taking initiative to teach doctors again: but we too need to educate our doctors, they too are human.

Celiac disease affects people differently. There are hundreads of signs and symptoms of celiac disease, yet many people with celiac disease have no symptoms at all. In those cases, the undamaged part of their small intestine is able to absorb enough nutrients to prevent symptoms. However, people without symptoms are still at risk for some of the complications of celiac disease.