Seek These Things

a blog discussing Celiac Disease, & the Gluten Free Diet, Books, Parenting, Politics, Religion, Pets, Product Reviews, and whatever else catches my interest

This Post is for Frankie May 24, 2009

Dear Frankie,

Thank you so much for your comment. I was beginning to think that only the spammers read my blog.

Living Gluten Free can be discouraging, but I hope you can take comfort from the experience of others.  Did you know 1 in 150 children are diagnosed with Autism? Well 1 in 133 people in the general population will develop Celiac Disease and I feel overall they are unaware of the warning sign, the treatments that are available, and the negative impact continued gluten exposure can have on someone with Celiac Disease or Gluten Intolerance.

Two ingredients you need to buy for your GF food storage are Brown Rice Flour and Guar Gum. You can get both at any Health Food Store. (Like Good Earth Natural Foods.) You can mix Brown Rice Flour and Corn Starch in a 3:1 ratio and replace the flour in any family recipe. It won’t be as good as traditional recipes or the GF recipes, which often use a “featherlight mixture” of rice flour, potato flour, and potato starch, but it will get you through those times you need some homemade comfort food. Rice flour is heaver than wheat flour, Xanthan Gum (and Guar Gum which is similar to Xanthan Gum and less expensive) act as rising agents to make your breads lighter in texture.

I understand that your diagnosis is still up in the air, even specialists disagree on how much blunting of the villi constitutes a diagnosis of Celiac Disease (for more information read Gluten Free for Dummies). Lactose Intolerance is very common among those first diagnosed with Celiac Disease starting out on the Gluten Free Diet. You need lactace to digest lactose and the part of your body that makes lactace is located on the tip of your villi. When your villi become blunted due to your auto-immune response attacking the gluten in your system, your body may be unable to produce lactace and you will be lactose intolerant. However, many people living on the gluten free diet have reported that their lactose intolerance disappears as their villi heal. You could be able to stomach lactose within a year following the GF diet.

I am also lactose intolerant. I began experiencing symptoms of lactose intolerance after my gallbladder was removed in 2008. It is challenging to make Gluten Free meals for my husband and Milk Free meals for me. Each of us longs for the food the other is eating. I’ll add more GF/CF recipes ad I become more adept at cooking without butter and cheese.

CF stands for Casein Free and means the recipe does not contain that milk protein. Some people sensitive to Gluten are also sensitive to Casein, one of the many protiens found in milk.  Look for GF/CF recipes and you should be fine. I also encourage you to test your level of lactose intolerance, you might be able to stomach a certain amount of lactose in your diet, and only experience symptoms when you go over that limit. I have found I can eat lactose about once a week, but never 2 days in a row. Unlike cheating on a gluten free diet, where every exposure to gluten increases your risk of developing colon cancer, lactose intolerance has not been linked to cancer.

You mentioned that the list of foods you cannot eat keeps getting longer. That is the opposite of the reaction I hear from most people on the GF diet. Once their CD was diagnosed and they began treatment, their other medical conditions (diabetes, depression, food allergies- like to strawberries, and lactose intolerance) improved considerably or went away entirely eventually.

Regarding your sensitivity to beef and chicken, is it possible your food is being cross contaminated? The longer you are Gluten Free correlates to how strongly you will react to gluten when it gets into your system.

Additionally, some people are more sensitive to gluten than others. My father works with a man whose 3 children all have CD. One of his daughters is so sensitive to gluten that she cannot eat off of any plate or fork that has ever touched gluten. She has to have her own pots and pans to cook her gluten free meals. And she can just forget about ever going to a restaurant. She has the most severe case of celiac I have ever heard of.

My husband (thank goodness) can use a cookie sheet or fork that has been contaminated with gluten once it has been washed (decontaminated). However he sometimes gets trace amounts of gluten in his food from cross contamination. One time his dad made us all spaghetti but used the same spoon to stir both the GF spaghetti sauce and regular spaghetti sauce and my husband got sick. When we first started the GF diet years ago we bought a roast chicken from a supermarket deli and didn’t think to check the ingredients. It was just roast chicken right? Well after my husband got very sick, we realized the chicken was injected with seasoning that contained, you guessed it, flour. My point was if you are having celiac symptoms when you eat beef and chicken, look for hidden gluten -anything processed could be the culprit.

No one should go through this life changing experience alone. Check the GIG to see if they have a local support group meeting in your area. It’s free to attend a meeting and you can ask questions to any of the members. They have gone through what you are going through and they will help you through.

Best of Luck!

-A.K.

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Second Generation Celiac Risk – Update March 12, 2009

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))