Educating all of us regarding this new world I have entered called Celiac Disease…

I am reading a book called Celiac Disease: A Hidden Epidemic and here is a small excerpt out of the book.

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.

That was just a small part of the book. I not only find it important for parents, but for patients to get out of denial altogether.

Video: Celiac Disease on The View

Saw the doc again yesterday…(a little chuckle coming…)

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.

Before taking Holy Communion…

If you are Catholic and partake in Holy Communion, make sure you are not taking the host: It is not gluten-free, it is made of wheat. Secondly, No community chalice…you risk touching some ones not so gluten-free lip or chap stick OR contamination from the host during the blessing. I think talking to your priest is a must and maybe you can get him to give you a special paper cup with wine. In canon law, apparently the bread is made of wheat, so they won’t change the rules. They do offer a low gluten type wafer, but for most with Celiac, the slightest amount triggers a reaction.

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.


Costliness of this disease…

My opinion of course. I believe the costliness comes into play when you at first do not know what you are looking for; your true diagnosis. You and your doc have tried numerous tests, and you still aren’t feeling better. I believe after diagnosis of one member of the family…I’m sorry you were the one who spent the most and you were diagnosed first… but since we now know what to look for – the medical cost is not as high for us. Even for those family members who were asymptomatic. Once we know if we have it or not, we go from there. Knowledge is power.

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.


How is Celiac Disease Treated?

Once an individual has been confirmed, through a biopsy, to have celiac disease they are instructed to begin following the gluten-free diet. This can often be difficult, at first, because so many foods contain gluten in them. However, through support and guidance from experienced celiacs and a skilled dietitian, many newly diagnosed patients learn that the gluten-free diet requires some creativity and planning, but that great tasting food isn’t out of reach.

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.)

The gluten-free diet is a lifetime requirement. Eating any gluten, no matter how small an amount, can damage the intestine. This is true for anyone with the disease, including people who do not have noticeable symptoms. It can take weeks for antibody levels (indicating intestinal damage) to normalize after a person with celiac disease has consumed gluten. Depending on a person’s age at diagnosis, some problems, such as delayed growth and tooth discoloration, may not improve.

A gluten-free diet means avoiding all foods that contain wheat (including spelt, triticale, and kamut), rye, and barley. Despite these restrictions, people with celiac disease can eat a well-balanced diet with a variety of foods, including gluten-free bread and pasta. For example, instead of wheat flour, people can use potato, rice, soy, corn or bean flour.  Plain meat, fish, rice, fruits, and vegetables do not contain gluten, so people with celiac disease can eat as much of these foods as they like.

The gluten-free diet requires a completely new approach to eating that affects a person’s entire life. People with celiac disease have to be extremely careful about what they buy for lunch at school or work, eat at cocktail parties, or grab from the refrigerator for a midnight snack. Eating out can be a challenge as the person with celiac disease learns to scrutinize the menu for foods with gluten and question the waiter or chef about possible hidden sources of gluten. However, with practice, identifying potential sources of gluten becomes second nature and people learn to recognize which foods are safe and which are off limits.

A dietitian, a health care professional who specializes in food and nutrition, can help people learn about their new diet. Also, support groups are particularly helpful for newly diagnosed people and their families as they learn to adjust to a new way of life. Over time, the diet becomes easier—even second nature. If you find that the diet is still difficult after several months, or you are still sick, talk to your doctor, your dietitian and your support organizations. You may be eating gluten accidentally and need an outside perspective to identify foods that are keeping you from regaining your health.

Most physicians learned during medical school that celiac disease was so rare they would never see a patient with symptoms in their entire medical career. Lectures on celiac disease in medical schools, even today, are few and far between. When your doctor was in medical school, he or she may have heard a 20-30 minute celiac disease lecture during four years of classes. Medical textbooks still contain outdated information.

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.

Yes. Recent research has demonstrated that a significant percentage of children and adults with positive celiac blood tests, even when proven celiac by the biopsy, had no or minimal symptoms when they were tested. Further, there are a few patients that carry the gene for celiac disease, have no or minimal symptoms and negative blood tests, yet a positive biopsy showing that the disease is active. Even though you have no symptoms, you must be on a gluten-free diet. Prevention is Key!!


Some Signs and Symptoms:

Celiac Disease presents with as many as 300 different symptoms, many of them subtle and seemingly unrelated.  Yet a significant percentage of people with Celiac Disease have no symptoms at all.  People without symptoms are at the same risk for the complications associated with Celiac Disease. 






 

Source: University of Chicago Celiac Disease Center

My symptoms as I can remember: Impetigo many times growing up;  a skin disease through Nursing School which the Dermatologist brushed off as nerves but medicated me heavily. My gallbladder now is non-functioning -( as a result of Celiac’s)? They think so… Weight gain and bloating progressively fast – I eat very little to be able to justify the weight gain. We eat at 4pm, and I am often sitting up because I cannot digest my food.  Nausea, fatigue, tingling/numbness in right leg since I was a teen ager – Dr. just shrugged his shoulders and left it at that. Skin rash (DH)  on my forehead that goes into my scalp, infertility….yes infertility. fogginess in the head, depression, anxiety, irritability. ***Trauma often is the precursor that finally let’s you know that you have Celiac’s.

Who should be tested for Celiac Disease?


Children older than three years of age and adults, regardless of symptoms, if related to a close relative with biopsy confirmed celiac disease. A close relative is considered to be a parent, sibling or child.

 

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.

Symptoms may or may not occur in the digestive system. For example, one person might have diarrhea and abdominal pain, while another person has infertility or anemia. Some people develop celiac disease as children, others as adults. Symptoms of celiac disease may include one or more of the following:
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