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Couple Of Things

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Posted 09 April 2012 - 12:08 PM

I was diagnosed in December 2011, with a 98% positive blood test. I got no better, so 2 weeks ago, I went for a biopsy. The results show, that I a, obviously very very sensitive to gluten. The consultant said I am the most sensitive he's ever seen. Apparently I had a score of 284 on the blood test, and normal is under 10. I'm not sure what that score is about? But surely thats not good! I am very disheartened as I have been on a gluten free diet for 4 months. But I suppose I need to concentrate more on cross contamination. I live in a house where there is still gluten.

I was just wondering on some tips that could help me get better? Including how to prevent cross contamination, and also what does that score signify on the blood test? And what does super sensitive mean, is it possible that a crumb could make me ill? And also what do I do if i do intake some gluten and how long will it take for me to recover? Although I feel ill constantly!

Many thanks! Hoping for some answers and to recover soon :(
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16 year old female. Been diagnosed December 2011. Currently being gluten free and also not eating Gluten free oats.

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Posted 09 April 2012 - 03:51 PM


I am sorry you are getting no improvement in 4 months. I am not one of the experts here. What are your worst symptoms? Do you have the Dermatitis Herpetiformis or Hashimoto's thyroid too? How did your vitamin panel come out? Were you gluten-free when the biopsy was done? These are all things to know. To my knowledge the biopsied samples are looked at under a microscope to see how badly damaged the villi of the small intestine are. I am not aware of a test that can tell how badly you may react to a minute amount of gluten, but after being gluten-free you become MORE sensitive.

Are you having flareups or just no change going gluten-free?

Hang in there. People who know far more than I will respond no doubt.

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Posted 09 April 2012 - 05:47 PM

Hey Babe! I really isn't the end of the world, but it might seem like it right now. B)

Being diagnosed with Celiac means that you have to be very careful about what you eat, at home and at school. And being 14, that's pretty hard to do.

Do your mom and dad have a good idea about what you can eat and what you can't? Can they help you make choices.

The key is to be totally gluten free, yet being able to hang with your friends and feel "normal".

You really should eat nothing with gluten. I can suggest some teen age food that you can enjoy with your friends, if you would like.
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Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien



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Posted 09 April 2012 - 07:55 PM

"Super sensitive" means that you are one of the people who react to smaller amounts of gluten. There is a wide variation in how sensitive people are who are gluten intolerant or celiac. I have read here that some researchers claim that a typical celiac can handle "x" very small amount of gluten per day, my reaction has always been, :ph34r: :blink: is that a typo or did he really say that ?

Also, the longer one is off of gluten, if one is celiac/gluten intolerant, the more sensitive one becomes if one accidentally ingests a small amount of it. They don't know why this happens (yet) but it is a real phenomena.

To prevent cross contamination, you have to be almost neurotic in a mixed household. This is where, if you have any sort of over - meticulous tendencies, go ahead and use them. For example, I have lived gluten free with my spouse for going on nine years now, he is the only person who I would trust to cook for me, outside of certain restaurants or maybe a few people here, and even HE has gotten me. Our house is gluten free (he did this voluntarily after about 2 years in ) but sometimes an "iffy" item makes it way in, which we give to him to eat. Example: this weekend I laid a cutting knife down on a paper towel on the counter, after I had cut off a piece of cheese to eat. He comes along, opens up a bag of dried fruit I had not checked the status of, takes several pieces of it out to snack on, and absentmindedly lays them right down on the blade of the knife. I am looking at this, thinking, oh, how cute. :huh: He has the entire kitchen and he has managed to zero in on the cutting tool I was using, before he gets a paper napkin, and I just managed to see this. So I took the knife and quickly cleaned it and he saw me and said, "oh...." :o They don't mean to do this, but they (gluten eaters) DO THIS ALL THE TIME.

This means that it is best, if you are in a kitchen with mixed items, to be there if and when somebody else is preparing something you might eat at the same time they're messing around with something they might eat.

Paper towels are your friends. Get some rolls of the pick a sizes and learn to lay them down all the time on the counter. You can lay them down on a clean plate to use as a cutting board, and you can lay them in the microwave. You can wipe up things with them, and then throw them away.

For example, I have cast iron pans that only do gluten free. They are prone to cross contamination, so I do not use a sponge on them, and you are not supposed to use soap on them, so I clean them with a paper towel, baking soda, pure apple cider vinegar, and water.

Besides your own cutting board and toaster, if you are using any teflon, you need your own gluten free dedicated pans, such as for some bakeware. Glass, ceramic, and steel are okay.

Sharpie marking pens are your friends. Anything that gets dipped into, like butter or condiments or cream cheese, needs to be "yours" only. I have watched my spouse dip into a jar of salsa and then spread it across a tortilla and then re- dip the spoon into the jar..... 4 or 5 times.... if that isn't a gluten free tortilla, you know what just happened.

If you have indoor pets, especially the kind that lick you, drool a lot, or sleep on the bed, get them on gluten free food. This way they are one less thing to worry about. And watch out for cat litter that has grain in it, incredibly, there is such a thing. Maybe a normal person doesn't have to worry about this, but a super sensitive does. I have a dog with a wheat allergy, (on grain free food) and I have accidentally glutened him, by giving him a table scrap, and he would be called a "super sensitive" if you could see his reactions. :ph34r:

It is not the "one thing," it is the accumulation of exposures that makes it or breaks it.

The other most incredibly annoying thing for the super sensitives is tracking down what could be causing a reaction, even when things are going seemingly well. You have my complete sympathy on this.
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