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Breaking the News – Encouraging Family Members to be Tested for Celiac Disease March 12, 2009

Since my husband C. was diagnosed, no one in our family has been tested for Celiac Disease. In an effort to spare his family from the potential fatal complications that arise when CD is untreated, I am writing this letter to his family members. Maybe you could share it with your family if they are reluctant to be tested.

Dear Family Member,

Your relative C. was diagnosed with Celiac Disease (or CD) in September of 2007. Since then we have learned that CD runs in families and as a genetic relative, you should be tested.

Celiac Disease is an autoimmune disorder which affects about 1 in 133 people in the general population. If you have a relative with celiac disease, your risk of having it also increases up to 60%.

There are over 250 known symptoms of Celiac Disease. You will not have all of them. Symptoms tend to be the same within families. C.’s CD presented with abdominal pain, nausea, vomiting, and diarrhea, inability to gain weight, anemia, mood disorders, ataxia, easily broken bones, and possibly acne, and alopecia.

Gastrointestinal Symptoms of Celiac Disease include:

  • Abdominal pain and distension
  • Acid reflux
  • Bloating
  • Constipation
  • Diarrhea
  • Gas and flatulence
  • Greasy; foul smelling, floating stools
  • Nausea
  • Vomiting
  • Weight loss or weight gain

Non-gastrointestinal Symptoms of Celiac Disease include:

  • Fatigue and weakness (anemia)
  • Vitamin and/or mineral deficiencies
  • Headaches (including migraines)
  • Joint/bone pain
  • Depression, irritability, listlessness, and other mood disorders
  • “Fuzzy brain” or inability to concentrate
  • Infertility
  • Abnormal menstrual cycles
  • Dental enamel deficiencies and irregularities
  • Seizures
  • Ataxia (bad balance)
  • Nerve Damage (peripheral neuropathy)
  • Respiratory problems
  • Canker sores (apthous ulcers)
  • Lactose intolerance
  • Eczema/psoriasis (and other skin conditions)
  • Rosacea
  • Acne
  • other autoimmune disorders
  • Early onset osteoporosis
  • Hair loss (alopecia)
  • Bruising easily
  • Low blood sugar (hypoglycemia)
  • Muscle cramping
  • Nosebleeds
  • Swelling and inflammation
  • Night blindness

Kids often present with:

  • Irritability
  • Inability to concentrate
  • ADD/ADHD
  • Failure to thrive
  • Short stature or delayed growth
  • Delayed onset of puberty
  • Weak bones or bone pain
  • Abdominal pain and distention
  • Nosebleeds

In the US, it takes an average of 11 years for doctors to diagnose CD from the onset of symptoms. CD is often misdiagnosed as psychological issues (hypochondria, depression, anxiety, or neurosis), IBS (ie: inexplicable bowel symptoms), spastic colon, chronic fatigue syndrome, fibromyalgia, lupus, unexplained anemia, migraines or unexplained headaches, unexplained infertility, inflammatory bowel disease or colitis, cancer, viral infection, food allergy, parasites, gallbladder disease, thyroid disease, cystic fibrosis, acid reflux, diverticulitis, diabetes, or eczema.

Between the ages of 6 to 22, symptoms often disappear, making diagnosis that much harder. If a person is not diagnosed by the age of 6, it is likely they will not be diagnosed until they are over 50. Symptoms that present it the 20’s and 30’s will often be blamed on life changes.

There are multiple tests for Celiac Disease: blood tests, biopsies, urine tests, stool tests, and genetic tests.

Blood Tests look for antibodies produced when someone with CD eats gluten (a protein found in wheat, rye, and barley). If you do not eat gluten every day for 3 months before the test, it is possible you will get a false negative for CD. You should have the following 5 tests done all at the same time: 1-tTG-IgA, 2-EMA-IgA, 3-AGA-IgA, 4-AGA-IgG, 5-Total serum IgA.If you are IgA deficient (a significant portion of the population is) your results may be misinterpreted as a false negative. Therefore if test 5 is lower than normal, someone qualified needs to reinterpret the results of tests 1,2, and 3.

If blood tests confirm the possibility of CD, doctors will want to biopsy the small intestine during an endoscopy. They will take samples of your villi (the hair like protrusions that absorb nutrition from your food in the small intestine) to see if they are blunted or flat. Any damage to the villi confirms a diagnosis of CD. Blunt or flat indicates the extent of the damage already done to the body- flat is worse. If you eliminate gluten from your diet prior to the biopsy, you may get a false negative test result.

If you have CD, you will be told you need to follow the Gluten Free Diet. You will need to substitute the wheat, rye, barley and oats in your diet with gluten free grains like rice, corn, potato, tapioca, soy, amaranth, beans, arrowroot, buckwheat, quinoa, millet, teff, nuts, or Certified Gluten Free oats.

The damage done to your villi will begin to heal once you have eliminated gluten from your diet and your symptoms will disappear completely in 6 weeks or less. If you accidentally or intentionally ingest gluten after beginning the diet your symptoms will return with force. Your body will be fully healed within 2 years after beginning the GF diet.

Urine Tests look for peptides which indicate your body is not breaking down the protein gluten. You can skip this test and go straight to the blood test because you have a relative with CD.

Stool Tests can be done without a doctor’s involvement, and you do not need to be eating gluten for the test to be accurate. Like blood tests, stool tests detect the presence of antibodies, the immune system’s reaction to gluten in your diet. Insurance will not pay for this test.

Genetic Tests look for the HLA-DQ2 and HLA-DQ8 genes in blood or stool. These are actually a combination of genes that do not follow the dominant/recessive pattern of Mendelian genetics. C. may have gotten some or all of the genes for Celiac Disease from both sides of his family. If you do not have one of these two genes, there is a 99% chance you do not have CD. If you do have one of these genes, there is still a 30% chance you do not have CD. Conversely, if you do have one of the genes, there is a 70% chance you do have CD, whether you experience symptoms or not.

If you are diagnosed with Gluten Sensitivity, your condition is not as severe as Celiac Disease. Studies have shown an environmental trigger causes Gluten Sensitivity to turn into Celiac Disease. We believe C.’s trigger was his tonsil surgery in February of 2004. But Gluten Sensitivity cannot turn into full blown Celiac Disease if you eliminate gluten from your diet. Gluten must be present in your diet to turn Gluten Sensitivity into Celiac Disease.

If you are asymptomatic with CD, you are still doing damage to your body by eating gluten, so resist the temptation to think you don’t need to stop eating gluten. For example, if you have CD, your risk of getting cancer (intestinal lymphoma) decreases 50% by eliminating gluten from your diet.

If you have CD or Gluten Sensitivity, you may not realize how bad you fell until you begin the GF diet. C. made the comment that his stomach always gurgled after eating and it was a new sensation not to feel it gurgle once he started the GF diet.

A note about insurance: Once you have attached Celiac Disease to your medical history through testing, you will no longer be eligible for private insurance due to the “potential terminal nature” of the disease. You can always skip testing and follow the diet for 6 weeks to see if you or anyone in your family responds positively to eliminating gluten from the menu. If you find your children respond to the diet and would like their school to make arrangements for them, you will most likely need to have a pediatrician prescribe the diet, something they may not do without testing. Its a difficult situation to be in, and I hope it doesn’t apply to any of you.

If you are diagnosed with Celiac Diesease, or want more inforamtion about the GF diet, please contact us and we will help you through the mountains of accurate and inacurate information available online. Please remember to send out a letter like this one to your genetic relatives so they too can be tested for Celiac Disease.

We hope and pray that you all enjoy the blessings of good health.

All our Love,

C. & A. K.

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Second Generation Celiac Risk – Update

I have updated my article Second Generation Celiac Risk with sources from Living Gluten Free for Dummies (2006) and Kids with Celiac Disease (2001), both by Danna Korn. You can read the updated article by clicking here.

 

Second Generation Celiac Risk February 7, 2009

My husband C. was diagnosed with Celiac Disease when I was 3 months pregnant. Because the disposition for this illness runs in families, we wanted to do everything we could to keep our new baby healthy.

We learned 1 in 3 girls with a parent with CD is likely to develop the disease. Boys have a lower risk, for reasons unexplained in our research, only a 1 in 8 chance. ***

At-risk infants are 5 times more likely to develop CD if they are exposed to gluten before the first 4-6 months of life; however, if a child is not exposed to gluten before the end of 6 months of life, their risk increases again. (Danna Korn, Gluten Free for Dummies,  p.55, (2006))

A woman without CD does not need to follow a Gluten Free Diet during gestation to protect her fetus. Women with CD who do not follow a gluten free diet have a higher rate of infertility, miscarriage, and birth defects. (Danna Korn, Kids with Celiac Disease: A Family guide to raising Happy, Healty Gluten Free Kids, p. 156, (2001))

Mothers nursing an at-risk infant should follow the Gluten Free Diet. My pediatrician explained if a nursing mother is accidentally exposed to a small amount gluten, it should not pose a risk to a nursing infant. Gluten, the protein found in wheat, rye, and barley, is coated before it is excreted in the breast milk. This coating should protect the nursing infant. Also, gluten is a large protein that normally cannot get from the intestine to the blood stream. A protein called zonulin, found in higher levels in people with CD, binds to key receptors in the intestine and opens the passage extra wide for the gluten to get through. (Danna Korn, Kids with Celiac Disease: A Family guide to raising Happy, Healthy Gluten Free Kids, p. 157, (2001))

If your baby eats formula, exclusively or in addition to breast milk, at this time both the Similac and Enfamil formulas are gluten-free. The Walmart brand formula is not GF. If you have questions, always call the number on the packaging from your cell phone.

Better education leads to a better life. Good luck raising your at-risk child.

*** I still have not been able to find the exact reference to this statistic yet. Here is what I have found:

  • If one of your children has Celiac Disease, the likelihood of another child having it is 30%. (Danna Korn, Kids with Celiac Disease: A Family guide to raising Happy, Healthy Gluten Free Kids, p. 143, (2001))
  • Up to 30% of people with the genes for CD, do not have CD; the other 70% do, whether they are diagnosed or not. (Danna Korn, Kids with Celiac Disease: A Family guide to raising Happy, Healthy Gluten Free Kids, p. 148, (2001))
  • Up to 30% of first degree relatives (parent, sibling, child) of a person with CD have CD. Although they may be asymptomatic, the damage is still being done. It is very common that they will resist if not flat out refuse to be tested. (Danna Korn, Kids with Celiac Disease: A Family guide to raising Happy, Healthy Gluten Free Kids, p. 152, (2001))
  • CD affects females about 3 times more often than males. ((Danna Korn, Kids with Celiac Disease: A Family guide to raising Happy, Healthy Gluten Free Kids, p. 7, (2001))