Adventures in Bennionland

Celiac Disease, Celiac Sprue, or Gluten Sensitive Enteropathy (GSE), whatever you want to call it is a reality for my family. During some testing in April for William we found out that he most likely has Celiac Disease I haven’t written about it until now because I have had to take some time to let it sink in. Plus there is an actual diagnosis that we need to get. The bottom line is my son has Celiac disease. We have to wait until July to get the official diagnosis so we can’t change his diet yet. It is definately tough for both my wife and I to have to wait to start helping him get better. Until then we can arm ourselves with information.

If you don’t know about Celiac Disease here is a quick info download:

What Happens With Celiac Disease

When individuals with CD ingest gluten, the villi, tiny hair-like projections in the small intestine that absorb nutrients from food, are damaged. This is due to an immunological reaction to gluten. Damaged villi do not effectively absorb basic nutrients — proteins, carbohydrates, fats, vitamins, minerals, and, in some cases, water and bile salts. If CD is left untreated, damage to the small bowel can be chronic and life threatening, causing an increased risk of associated disorders — both nutritional and immune related.

Some long-term conditions that can result from untreated CD:
-Iron deficiency anemia
-Osteoporosis
-Vitamin K deficiency associated with risk for hemorrhaging
-Vitamin and mineral deficiencies
-Central and peripheral nervous system disorders — usually due to unsuspected nutrient deficiencies
-Pancreatic insufficiency
-Intestinal Lymphomas and other GI cancers
-Lactose intolerance
-Neurological manifestations

Other associated autoimmune disorders:
-Dermatitis Herpetiformis (DH)
-Insulin-dependent Type I Diabetes Mellitus
-Thyroid Disease
-Systemic Lupus Erythematosus
-Liver Diseases
-Less commonly linked to CD:
-Addison’s Disease
-Chronic Active Hepatitis
-Down Syndrome
-Rheumatoid Arthritis
-Turner Syndrome
-Williams Syndrome
-Sjögren’s Syndrome
-Fibromyalgia
-Alopecia Areata
-Scleroderma

Cause
The cause of Celiac Disease, also known as celiac sprue, or gluten sensitive enteropathy (GSE), is unknown. Research indicates that CD is strongly associated with a group of genes on Chromosome 6. These genes (HLA class II) are involved in the regulation of the body’s immune response to the gluten protein fractions.

One out of 133 people in the United States is affected with celiac disease. CD occurs in 5-15% of the offspring and siblings of a person with celiac disease. In 70% of identical twin pairs, both twins have the disease. It is strongly suggested that family members be tested, even if asymptomatic. Family members who have an autoimmune disease are at a 25% increased risk of having celiac disease.

Treatment
The only treatment for CD/DH is the lifelong adherence to a gluten-free diet. When gluten is removed from the diet, the small intestine will start to heal and overall health improves. Medication is not normally required. Because osteoporosis is common and may be profound in patients with newly diagnosed CD, bone density should be measured at or shortly after diagnosis. Consult your physician regarding specific nutritional supplementation to correct any deficiencies. The diagnosed celiac should have medical follow-up to monitor the clinical response to the gluten-free diet. Dietary compliance increases the quality of life and decreases the likelihood of osteoporosis, intestinal lymphoma and other associated illnesses.

Adapting to the gluten-free diet requires some lifestyle changes. It is essential to read labels which are often imprecise, and to learn how to identify ingredients that may contain hidden gluten.

Be aware that hidden gluten can be found in some unlikely foods such as: cold cuts, soups, hard candies, soy sauce, many low or non-fat products, even licorice and jelly beans.

Potential harmful ingredients include:
-unidentified starch
-modified food starch
-hydrolyzed vegetable protein – HVP
-hydrolyzed plant protein – HPP
-texturized vegetable protein – TVP
-binders
-fillers
-excipients
-extenders
-malt

Gluten may also be used as a binder in some pharmaceutical products. Request clarification from food and drug manufacturers when necessary.

The above information comes from Celiac.org, one of the resources Shell and I have become acquainted with. This is going to be a dramatic change for a family. Shelly and I have had a few conversations about this, we definitely need to have more. Something that Shelly has said each time we’ve talked about it keeps sticking with me. She says that if she had to pick a sickness or issue that our child had to deal with, given the myriad of diseases out there this would probably be one she would choose. I agree with her, because besides modifying his diet Will can lead a normal life. At the same time that really does not console either of us. It makes both of us angry that our child has to deal with this at all. He’s a great kid he should be able to enjoy life to it’s fullest and not have to read every damn label. The problem is who do you get angry with. It is definitely not Will’s fault. Shell and I had know way of knowing or preventing this. Genetically it probably got passed to us by our parents, but it isn’t there fault either. Sometimes I just want to take a dramatic pause and curse at the sky. I’m not sure what I believe as far as God goes so I can’t really blame Him/Her/It either.

In the end We’ll roll with the punches but I’m going to give myself some license to be angry about it from time to time… even if I don’t know who or what to be angry at.

We have made it to California. Our new adventure has begun, so far so good. The boys are definitely having a little bit of difficulty in adjusting. When will gets frustrated or upset he tells us that he wants to go back to his home in Utah. A couple of time he has asked for us to go get his old car back. We traded in our Honda Element for a Mazda 5 a few months ago and he is still adjusting to that as well.

That being said the move has been good so far. After a month apart I have enjoyed having my family around me again. The boys and I have found a new park that we are enjoying on a regular basis as the following to videos will attest:

We are also getting the boys out walking more. Almost every day they go out on at least one walk. This is a video of William taking Walker and I for a walk:

I love being these two boys’ dad. I can’t get enough of them.

It has been a long time since I have updated our blog – and it is long overdue. Since my last post, which was 39 weeks ago, so many things have changed. I’m writing this in June but I’m back dating in order to put other entries in the right order.

Walker is no longer a baby – not by a long shot. As of today he is almost twenty-two months old and is quite the toddler. Each email that I get from the ‘Parent Center’ with developmental updates on what a twenty-two month old is like, I cannot help but laugh at how much he is like the typical toddler. He has his mood swings (especially thanks to three incoming teeth) and giggles a lot. He climbs everything and one of his favorite things to do is hang onto the door handles and swing like a monkey.

Will turned a three a couple of months ago – and is in full speed towards adulthood! We signed him up for preschool the other day and I’m not sure if he is going to make it through the summer as he is so excited! He told us the other day that he favorite things are (in order of favorite): fans, propellers, windmills, and semi-trucks.

Of course our largest change has been our move from our home in Utah to our new home here in CA. The boys have done incredibly well with the change. Every once and a while they ask for their old home and everyday they ask for one of their friends or family. It is easy to explain where the friends and family are, and it helps that they both know how to work the phone enough to call. It is harder to explain where their old home is – and why we cannot go back there. Given that I feel the same way about seeing people and my old home, it is a conversation that always tugs at my heart.

Still we are all adjusting really well – and are getting to know are new backyard which includes the ocean, Disneyland, museums galore, and places to visit around every corner. The boys ask each day what ‘adventure’ we are going to have. I have lots of pictures to put up – but first things first.

The best part of a new move for me is getting settled physically settled into the new place. Given that our new home is the home I spent most of my life in, the boys were familiar with it, E was already living here, and of course I was ‘at home’. E and I wanted the boys’ room to have the feel of their old room with a little new to note the change.

When we opened their door they were so excited – maybe it was to see their beds again. More likely it was the fact that most of their toys were out in the open and easily accessible! They have spent hours playing in here, reading stories with Papa and KK, and listening to E sing his songs.