Celiac Sprue

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 our oldest 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. My wife and I have had a few conversations about this, we definitely need to have more. Something that she 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 he 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 his fault. My wife and I had know way of knowing or preventing this. Genetically it probably got passed to us by our parents, but it isn’t their 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.

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