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Shouldn't We Be Better By Now?


Gluten Free Girls

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Gluten Free Girls Apprentice

My 6 year old, 12 year old and I were all diagnosed with Celiac disease at the end of June. We will be meeting with our doctor at the end of this week to see if our numbers have dropped at all. I am scared to death that we will go to this visit and find out that we aren't doing things correctly. My girls immune systems seem to be worse rather than better and my youngest still has the extremely dried and cracked lips as well as thinning hair. I think I'm desparate for a sign that we're headed in the right direction. My girls and I have never suffered any gastrointestinal symptoms so we haven't been able to use this as a measurement. Any insights? I know that in general it could take a year to repair our intestines, but I need some sign that we're heading in the right direction.


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Booghead Contributor

Well all I know is that: Perhaps your daughter has thinning hair and dry skin(cracked lips) from a thyroid problem. Which is very commonly associated with gluten intolerance. The good news is that you don't have any gastrointestinal symptoms because they are awful.

I will give you the general rundown of things a lot of people don't know have gluten in them or gluten on them. (Because you are new I don't know how much you know).

Toasters-gluten lives in toasters you may need a new one.

Pills, Medications, and Supplements-very commonly have wheat in them. Benefiber has gluten in it.

Lotions, Shampoos, and Conditioners- All 3 of mine had "hydrogenized wheat product" which is gluten. Made me itchy all the time.

Any food fried in a fryer that has breaded food fried in it has gluten contamination.

Thats the things I think people look over quite frequently, maybe more info and we can help you!

Jenny (AZ via TX) Enthusiast

Booghead has a lot of good advice. It may also be because the damage to all of your intestines was severe. It took me longer than 6 months to feel good again so it really just depends on the person. Unfortunately, there is only so much you can do as the body simply needs time to heal. Continue to be diligent in not letting gluten sneak in and hopefully you will all feel better soon! Hang in there. It really does get better.

rosetapper23 Explorer

It sounds as though you might all be suffering from vitamin, mineral, and/or hormonal deficiencies. Your daughter with the thinning hair and dry lips should be checked for all deficiencies, especially B12, zinc, and manganese. If she hasn't been checked for diabetes, this should also be done since celiacs share a gene with diabetics. Doctors should alwayscheck each disease when a child presents with one of them.

As for doing things "right," it takes time to discover all the ways that we can get cc'd. Your daughters would especially be at risk because they probably visit friends and attend school. All you can do is your best....and, over time, your health should improve.

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    • Scott Adams
      The following two lists are very helpful for anyone who is gluten sensitive and needs to avoid gluten when shopping. It's very important to learn to read labels and understand sources of hidden gluten, and to know some general information about product labelling--for example in the USA if wheat is a possible allergen it must be declared on a product's ingredient label like this: Allergens: Wheat.      
    • trents
      Tammy, in the food industry, "gluten free" doesn't mean the same thing as "no gluten". As Scott explained, the FDA (Food and Drug Administration) allows food companies to use the "gluten-free" label as long as the product does not contain more than 20 ppm (parts per million) of gluten. This number is based on studies the FDA did years ago to determine the reaction threshold for those with celiac disease. And the 20 ppm figure works for the majority of celiacs. There are those who are more sensitive, however, who still react to that amount. There is another, stricter standard known as "Certified Gluten Free" which was developed by a third party organization known as GFCO which requires not more than 10 ppm of gluten. So, when you see "GFCO" or "Certified Gluten Free" labels on food items you know they are manufactured with a stricter standard concerning gluten content. Having said all that, even though you may read the disclaimer on a food item that says the spices may contain wheat, barley or rye (the gluten grains), you should be able to trust that the amount of gluten the spices may contain is so small it allows the total product to meet the requirements of gluten free or certified gluten free labeling. I hope this helps.
    • Tammy Pedler
      As soon as I see gluten free I read the labels. I always find stuff that I cannot have on the products them selfs. Like spices, when the labels says  everything listed and then after like say garlic salt then the next thing is spices. When it says that that can contain wheat and other things I can’t have.. 
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