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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3 Responses to “This Post is for Frankie”

  1. Aunt Jayne Says:

    Wow, what a great thing you are doing for Frankie (and others who have this disease)
    I also have severe symptoms (although not as severe as the little girl you mentioned in your post)
    For that reason, I started my blog to help others.
    I would like very much to add a link to your blog – I think you have alot to offer my readers. (perhaps we can get more information and awareness out there)
    I have been to your blog before (sorry I didn’t leave a comment) and I will be back.
    Thank you
    Aunt Jayne

  2. Cheryl Says:

    I recently went gluten free and also began noticing increased sensitivities to other foods, primarily proteins. The jury is still out, but here’s my take on what has happened. When I was eating gluten I needed to be on meds for gastric reflux, but once i removed gluten, it was time to re-evaluate that med. I stopped taking the gastric reflux meds and my appetite is returning and protein isn’t bothering me anymore. My guess? The meds for gastric reflux were removing too much acid from my stomach so that I could not properly digest protein…i finally have energy again! Just thought this might help/contribute to the possibilities of what’s going on with Frankie.


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