Family, Computers, and Creativity

Nov. 11, 2005

Celiac and Non-Gluten Diet Information

Posted in Celiac
There are several tests now for Celiac. I will list the most definitive ones
first:
 --- Genetic testing: This is an inherited trait and they know now what gene is involved. The test will even tell you if you inherited it from your mother's or father's side of the family. Go to http://www.kimballgenetics.com/tests-celiacdisease.html. All you have to do is order the kit which they will mail to you. You take a cheek swab and get it back to them. It is more expensive than the other tests I will mention, but it is definitive and gives you useful information that can help you identify what side of your family may need to themselves look at the possibility of celiac.
--- Small intestine examination: This one is quite unpleasant, but it is pretty conclusive so long as you are eating gluten. If you are on a gluten free diet already, it is quite possible to get a false negative because the small intestine's damage will not always be aparent. The doctor will send a special tool down through the digestive system until it reaches the small intestine. There the tool will take a plug of the lining of the small intestine. Evidence of celiac will be that the villi that line the samll intestine will be flattened. It is as if the condition eats the tops off the villi. This also explains why many celiacs have difficulty with dairy products because the disgestive enzymes for dairy is at the tips of the villi.
--- Antibody test: You will need a blood draw for this one. What you need to ask for is a Celiac Disease Antibody Panel. Specifically, the anitibody tests are: Tissue transglutaminase (tTG) IgA Endomysial antibody (EMA) IgA Gliadin antibody IgA, IgG Total IgA . This is another test that will give a false negative if you are on a gluten free diet already beacuse when the gluten is removed the body doesn't need to be making as much of the antibodies that the test picks up on.
--- The non-doctor route is to just put yourself on a gluten free diet and see how your body responds. It takes a good bit of educating yourself and watchful monitoring of ingredients and kitchen practices to do it. But ,you will need to know that stuff anyway if the test is positive. In my two they were noticeably better in two days. By two weeks they were thriving.



What to expect from the gluten free diet:

According to studies, it takes three to four months for the brush villi in the intestine to completely heal. If the damage is very severe, there will be permanent scarring. My two could begin doing dairy foods without Dairy Ease at about the three month mark. My husband's bone and joint pain went away in two weeks. Energy levels where in steady improvement throughout that first month gluten free. Stomach and intestinal distresses settled down in mere days of being gluten free.



If you even suspect that you are celiac, you really need to take action immediately. The chances of getting intestinal cancer are so high for celiacs that you cannot afford to put off treating it. John's mom and aunt both died from intestinal cancer. Once you go gluten free for three years, the cancer rate drops to normal. I am so thankful that we caught my husband's and daughter's celiac condition before they had to go through what his aunt and mom went through!




Getting rid of gluten:
The obvious one is easy - don't eat anything with wheat in it. However, there are many foods that you might not suspect such as:

licorice, jelly beans, and other chewy candies often have gluten in them.
Read the label before assuming anything.

Oatmeal - Oats do not contain gluten, but wheat is often rotated in the crop cycle so volunteer wheat often grows along with the oats. The separation process doesn't do a good job separating out the wheat so oats from the store is often contaminated. Befor we bought our rice mill, I tried to use oats which I could process to a flour with just a blender. Sometimes a whole tub of oats could be used without a problem. Sometimes the top half of the tub would be fine, then the lower half would bring symptoms. This was all before we understood the contamination issue which explained a lot of what we were experiencing.

most soy sauces. There are a few wheat free ones. Just read labels.

turkey - yes turkey. Read what they inject into it before you buy any brand. It usually is broth and gluten. I cannot remember right off the top of my head which brand was OK.

Most canned soups have wheat as a thickener. The NON NOODLE HealthyChoice soups are what I keep on hand (Chicken and rice and vegetable medley). My husband is sensitive to msg, and it is the only one that meets the non-gluten and non-msg criteria.

Be suspicial of all pre-prepared foods with sauces. If it is made from cornstarch it is OK, but often wheat is the thickener.



Cross Contamination Issue:

John is extremely sensitive to gluten, so even the tiniest amount sets him off. Melody is far less sensitive and when a very small cross contamination issue arrises sometimes she can escape unharmed. John is our canary in the mine. He can tell you within 20 minutes of eating if there was gluten in a food. He even got sick when instead of ordering a birthday cake for my birthday last year (surpise early party), he made a homemade one. So sweet. He didn't go licking any spoons and he was very careful. But nontheless, he got celiac symptoms.

Eating out has been a real pain - literally. It is very rare that we can all eat out and John and Melody do not get sick afterwards. Even through they very carefully select non-gluten foods at the buffet. All I can figure is that when food is prepared on a mass scale, wheat contaminated surfaces and utensils must be the culprit.

Here at home, I have two of the following items, one for whate and one for non-wheat to keep contamination down:

colanders/noodle strainers - We use rice noodles for John and Melody which when fresh taste just like wheat noodles do. They get hard and crumbly upon refrigeration though, so I only make enough for the meal. Because colanders are so difficult to get the sticky gluten out of those small openings, I don't risk it.

iron skillet: I find that my iron skillet is too porous to be sure to keep wheat out.

I have designated serving and cooking utensils for wheat and non-wheat for obvious contamination reasons.

I even use different glass baking dishes consistently for the non-wheat eaters. Too often I make a wheat dessert and a non-wheat dessert that look identical. Without a dish clue to tell the difference it is too risky.


 
If you get a positive diagnosis:
 
I absolutely recommend you get a brand new Whisper Mill grain mill to makeyour own rice flour with. Rice will become your primary wheat substitute. Buying premilled flour and getting it shipped to you or buying from a health food store will eat you out of house and home! We spent $65 per shipment/month (30 lbs) for 5 years before we finally spent the money on a mill. It paid for itself in just two months and had the added bonus of allowing me to feel like I didn't have to severly ration the flour. I love ours.
 
I don't recommend buying one used because most everyone uses it to mill  fresh wheat flour. You cannot get into the working parts to clean wheat contamination. Ours was about $120 counting shipping. Best money we ever spent.
 
If you decide to buy health food store non-gluten bread, be sure to inspectit before buying it. Even when stored in the healthfood store freezer we had trouble with getting home to find mold on the product. I suspect the problem was in shipping, not the store's handling. Rice flour has a very sensitive shelf life. It spoils/molds much, much easier than commercial wheat flour. I will leave out bread or cakes for one night on a counter, but by the second night I place them in the refrigerator or freezer.
 

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Comments

Nov. 11, 2005 - Untitled Comment

Posted by mistresninos
Loving your posts on Celiac. Question for you...is there a difference between Celiac Disease and a wheat allergy? Thanks. Sara
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Nov. 11, 2005 - Sorghum

Posted by ejoyce,ink

I make an excellent GF bread with sorghum flour. It is the best bread we've had in my 13 years of celiac disease. I order it in bulk from the site below.
http://www.twinvalleymills.com/

A couple of other things...and I know you know this...it's important to check labels EVERY TIME you buy, as ingredients can change without notice. For instance...in PA Corn Pops are no longer GF - they contain wheat starch. Progresso lentil soup is the one convenience canned soup that I keep on hand for my daughter and I.

I'm enjoying your posts on celiac. Thanks so much! Eleanor



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Nov. 11, 2005 - Updates

Posted by armoorefam
I removed the Corn Pop cereal suggestion. Thanks ejoyce,ink. We haven't bought that in a while and I made an assumption that it was still gluten free. I will need to be more careful to know that my info is current if we are not currently eating a product.

Celiac and wheat allergy are different:
Celiacs have the villi and dermatitis response that wheat allergy sufferers don't seem to get. The anyibodies that are produced by the body are different as well. But, we are all in the same boat as far as truing to adjust to life without wheat.
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Nov. 16, 2005 - gf food cost

Posted by Anonymous
Hi,
It's mommida from the gluten free forum. Have you ever looked into www.unitedbuyingclubs.com ? You buy in bulk and save time and money. See if there is an existing co-op in your area or start your own. The top gluten free product lines are available. Great job on your blog here! Your positive attitude and description of gluten free life is what people really need to know.
Laura
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Nov. 17, 2005 - getting rid of gluten portion of your blog

Posted by dianasheeks@yahoo.com
I only want to add that you should not only avoid wheat, but wheat, RYE,BARLEY, and as you pinted out, the book is out on oats.
Thanks for sharing the testing sites and forum!
(I want to be tested, but lost my health insurance with my divorce, but my daughter is being tested for celiac presently, my youngest son for specific wheat allergy and another son for celiac as well. We were gfcf back in 2000, and we all never felt better. I am beginning to feel as though I am a celiac also. Their father also displays all symptoms but is a non-believer, even when presented with lab work and endsoscpies.
Again, thanks for posting this wonderful information.
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Hi, I am Tammy and I am homeshool mom to Gregory (20 - now graduated). Melody (18 - now graduated), Timothy (14) and Zachary (7). We all love computers and creativity so it is just natural that it would be a big part of our homeschooling.

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