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Old 12-16-2009, 05:57 PM #1
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Default I DONT have Celiac

I have been poked, prodded, and scolded by some very nice, well meaning friends. I have heard it over, and over and over that I probably dont really have MS, I MUST have Celiac! If I would just stop eating gluten or products contaminated by gluten, my MS would disappear! imagine that?!

My DD has severe celiac (she is adopted) and was extremely restrictive of diets while under our roof. Once she left for college, we added gluten back to the household, and I saw NO difference in my energy, attitude, illness, or standing in life.

Anyway, since I am having so much trouble with my tummy, and needed an endoscopy, I asked if he would please do celiac biopsies to double check. He took several from the esophagus, and several from the tummy, and several from the duodeum (sp) and the JE area. It was about a dozen all total.

I got the result today. He called and said that there was NO inflammation in my tummy, or intestine. No flattening of the cilia. No raw or blanched areas. He said he is well versed in just how sick Celiac patients are, and has helped 3 MS patients reverse their MS dx into a Celiac or Gluten issues. After gluten free diets, and so forth they were discharged as MS patients after lesions healed, and sx were gone. So...He said he went thru me with a fine toothed comb (literally!) and is 100% sure that do NOT have issues with gluten. He asked me to go on a gluten binge before surgery to give the tissues time to react. So....

That answers so many of my critics, and allows me to definitivaly say I DONT have celiac, and I have my MDs permission to include gluten in my diet if I wish it. That still means that they havent gotten to the final answers of what IS happening with my tummy. The surgeon still says its folding upon itself and wants to take a corner of it.

Thanks for all the prayers, well wishes, and support.
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Old 12-17-2009, 05:32 AM #2
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Well if there is one good thing about having ms, it does help you in learning all the stuff you don't have. It's not fun, but it helps.

I'm glad to hear this.

Seems like it became popular to be lactose intolerant, so everybody thought they were, and you must be too. Now celiac is a buzz word. *They* think they have it so they thought you did too.

I hate it when disorders are a fad - everyone has ADD, everyone is dyslexic, everyone has carpal tunnel.
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Old 12-17-2009, 06:14 AM #3
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In my little corner of the world, "everyone" has chronic lyme. I probably don't really have MS, either.
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Old 12-17-2009, 08:41 AM #4
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I think its because my DD IS celiac, and severely so. She was hospitalized, and very sick before we finally pinned down why. She was emmaciated, and painfully thin. She was bloated, and grey in complextion. We were dismissed by several MDs who told us she had everything from growing pains, to anxiety, to attention seeking behavior. Why sure! what child doesnt drop down to 75 pounds, just to get attention?! Anyway, I think that is why so many are quick to slap that label on me, and its been sorta hard.

I have had well meaning friend dig thru my cabinet and say "no wonder you have brain lesions! you have a loaf of whole wheat bread here!" So, while Celiac would have been an answer, I swear to God! I was ready to start slapping folks.

I do NOT want to be restrictive in my diet unless I NEED to be. We like bread! A completely gluten free life style is a mess to maintain. Like the new gluten free cakes that betty crocker makes. they are made on a machine that also makes gluten products, and that means....you CANT eat it if you are severly resistant to gluten! You see many shining products on store shelves now, but many are cross contaminated. My DD had celiac long before the store was filled with choices. We used to have friends wipe their hands at the door to stop the cross contamination. They would eat a cheeseburger, and then come want to shake hands with her. No wonder she had anxiety.

I think this answers my worst critics with a LEAVE ME ALONE kinda stab. I am so tired of well meaning folks telling me I just need to clean up my diet, or be stung by bees, or remove all metal from my teeth, or take 6 months of abx for lyme, or get retested for lupus cause I have a small rash on my face. SHEESH! Its a good solid NO, I dont have this, now can just let me have MS?
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Old 12-17-2009, 10:20 AM #5
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Glad to hear you don't have celiac, Dej...like you said, it's extremely high maintenance.
I think people are well-meaning when they give advice...many people feel powerless when someone they love has a condition, and try to "solve" the problem for them...

At least you know it isn't celiac...
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Old 12-17-2009, 02:20 PM #6
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*passing Dej a whole wheat muffin* Enjoy my dear.

Oh, and now I know where my ''fine tooth comb'' disappeared to.

Glad your'e getting some answers Dej and that Celiac's has been ruled out.
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Old 12-17-2009, 02:55 PM #7
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good news Dej.
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