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From Eileen Wuebker [[log in to unmask]]
Question: Do I have to re-introduce gluten in order to have an accurate
gluten sensitivity test done? Answer: Yes and No
If a person knows they are sensitive to gluten and have gone on a
gluten-free diet, and want to know if they can have gluten again, then a
challenge is in order (reintroduce gluten). THIS IS STRONGLY NOT
RECOMMENDED. The gluten challenge has many cases of people who were damaged
(some permanently) from the reaction to reintroducing gluten.
Even Small Amounts of Gluten Cause Relapse in Children With Celiac Disease,
Journal of Pediatric Gastroenterology and Nutrition 34:26-30
And it is no longer a requirement for diagnosing Celiac Disease Am J Clin
Nut 1999;69:354-65
Among 374 children in whom Celiac Disease was diagnosed before the age of 2,
5% developed an auto-immune disorder while on a gluten-free diet. Of those
who went gluten-free, had years of no symptoms, then went back on a
gluten-containing diet, 3.65% prevalence of systemic auto-immune disease
with less than 12 months of eating gluten 9.1 % prevalence for 13-36 months
of eating gluten again, 26.3% prevalence for > 36 months of eating gluten
again
This means 1 out of 4 people who were sensitive to gluten, went gluten-free,
eliminated all of their symptoms, and then began eating gluten again
developed auto-immune diseases within 3 years. Gastroenterology
1999;117:297-303
If you know you are Gluten Sensitive, and you've gone on a gluten-free diet,
and you want to know "am I better", then testing will confirm you are being
successful in 'quieting down' the inflammatory cascade that occurs with
Gluten Sensitivity and which sets one up for the development of autoimmune
disease.
And if you want to 'throw the dice', if you want to gamble that you won't be
the '1 out of 4' who develops an autoimmune disorder, then you would want to
first check and make sure your tests are negative while being on a
gluten-free diet, then do your gluten challenge and test again 1-2 months
later. Once again, not recommended to do this.
Many people do not develop Celiac Disease until later in life. So even if
one tests negative now, if they're genetically vulnerable, CD can develop at
any time as a result of the body no longer able to handle the stress of
life. Something will be the 'straw that broke the camels back' and a person
who has had negative tests in the past will begin producing the antibodies
and begin the tissue destruction that will eventually manifest as Gluten
Sensitivity and/or Celiac Disease. So in this scenario, these people want to
know if they're genetically vulnerable.
The question is, am I sensitive to wheat? When a test looking at Gluten
Sensitivity comes back positive, it tells us the immune system is reacting
to an exposure to gluten. And if you are not eating gluten, it's one of a
few things:
-a hidden exposure to gluten
-a cross-reactive food
-a cross-reactive virus or bacteria
-a poorly functioning GI Tract (consider Array #2-Intestinal Antigenic
Permeability Screen)
-an unknown cause (potentially Refractory Sprue).
18. It took me quite a while to realize that I was sensitive to some foods
that do not contain gluten. Anything containing soy, or sugars (exception:
maple sugar, date sugar), caseine ( milk products) a few other things.
Please note, butter and Heavy whipping cream were not a problem, as they are
milk fats and not caseine. Very dark chocolate was fine for me, but milk
chocolate was a killer.
It sounds brutal, but if it works, it is worth a few weeks of deprivation.
Try a diet that starts with only plain rice for three days, then add lamb -
roasted, no seasoning - so that the next three days are rice and lamb. Then
add a veggie - your choice. Same three days - with three foods. Water
should be fine, but you may need to use distilled water. Make sure that
there is no Accent (MSG) in any of her food. No licorice, etc. Read a
good book about food allergies and note anything that you like to eat. If
you want ice cream, make your own with whipping cream and fruit - after you
have tested all the ingredients - one at a time. Any fruit that might have
some mold involved should be removed from your diet. Cinnamon is sometimes
a problem. If you prefer chicken, then start with chicken. Always add a
food for three days. With any negative symptoms, cut out the newest food..
and wait three days, then try something else. NO FOODS THAT HAVE ADDED
INGREDIENTS. That means no hot dogs, no hamburgers, no chicken fingers that
are coated, etc. Just chicken cooked in its own juices. Pure ground veal
is fine for testing,
The same is true with pills. Cut back to no pills for three days, then add
one pill at a time, three days but when you add a pill you cannot use a new
food during that a three days.
The alternative would be to have a test called the ELISA test. It requires
drawing one vial of blood and then the blood is tested against all foods,
medicines, etc. and you should get a list of things to which she is having
a negative reaction.
Best of luck. Those of us who have complicated food reactions have found
that this pattern of limited foods, adding one at a time, etc., is very
effective. So is the Elisa test.
19. Is your kitchen gluten free or are you cooking both ways? I have sent a
cross contamination list for you to look over.
-- Never use the same toaster/oven that gluten products have been used to
prepare. Replace or use the toaster bags which are available.
-- Replace all cutting boards used to prepare gluten free foods. Also
rolling pins and old baking stones.
-- Replace wooden or Teflon cooking utensils used to prepare gluten free
foods.
-- Replace porous pots, pans, skillets, cookie sheets, pizza pans. Teflon
and cast iron are porous and retain gluten. Teflon coated pans are not
recommended for Gluten-free cooking, especially baking, as they don't allow
the baked goods to crawl up the pan.
-- Replace pans with seams. Past gluten items can easily be retained in the
seam.
-- Wash gluten-free dishes first to avoid cross contamination.
-- Make sure to clean can openers, replace colanders, especially if used for
pasta. Check blades on blender.
-- Handling of pet food with wheat should be avoided, or wear gloves when
feeding.
-- Licking of envelopes, stamps was once thought to be avoided; in the past
year we have found most are made from vegetable protein.
-- Very important: Silverware drawer is a magnet for gluten crumbs.
-- Sharing tables at work, where someone else has eaten ahead of you a
gluten lunch. Wash the surface and place food on napkin or place mat.
-- Wash your hands often; especially after playing or caring for kids and
pets which aren't gluten free.
-- Avoid the bulk bins at the grocery; people have a tendency to use the
scoops in different bins.
-- Use squeeze bottles for ketchup, mustard, mayonnaise and etc. Have a
separate jar of peanut butter and jelly; same is true with butters and
margarines.
-- Kids need to be careful at school, crawling on the floors where there has
been gluten crumbs.
-- Also in the lunch room, after school clubs, hallways, bathrooms.
-- Check ingredients in school supplies: Clay, crayons, paints, magic
markers, finger paints, glue, art supplies.
-- Play-doh, paper macha (made with wheat flour)
-- Check the ingredients in your shampoo (DH), hair care products,
hairspray, dental products, hand lotions, suntan lotions, lipstick, make-up,
medicines, vitamins, spray starch for laundry.
-- Shared computers may have gluten left overs.
-- Make sure your Charcoal doesn't have wheat binders in it. Grill tops are
usually full of contamination.
-- Duplicate/triplicate forms and cashier paper tapes made with gluten.
Take the first few sheets of paper towels off the roll and don't use the
last couple as glue could be from wheat.
-- Check dish detergent and laundry detergent (residue ends up on dish
towels, spreads to dishes.
If you live with others who eat gluten in the household, consider these:
-- Kissing from significant other or children
-- Telephone
-- Door knobs
-- Mixers (wheat flour can remain airborne for 24 hours)
-- Sharing a bowl of gf snacks with others unwashed hands
-- Significant other's mustache (breeding ground for gluten crumbs)
-- Hand towels
Helpful hints:
-- Color code all gf items and have separate drawers and cupboard for pans,
cooking utensils, plastic ware and etc.
-- Use parchment paper and baking liners when baking.
-- Never lay anything down on a counter without placing a paper towel down
first, or putting a plate underneath it.
-- Clean the knobs on stove, microwave, door on refrigerator often.
I am sure there are more which could be added to this list. You don't have
to live in a bubble-just be careful; gluten contamination isn't fun!
Visit the Celiac Web Page at Http://www.enabling.org/ia/celiac/index.html
Archives are at: Http://Listserv.icors.org/SCRIPTS/WA-ICORS.EXE?LIST=CELIAC
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