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8/4/04
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Hi all! It's 1:12 am here in western Pa. I just want to let everyone know I'm off to bed and getting ready to start a brand new day!

I guess, now, to adapt the expression to my liking, the calm AFTER the storm. The numbness after hours of screaming and crying to fight everything away.

I'd like to thank every person who has been supportive of and helpful to me throughout this journey. I'll keep you posted.

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If you see this before you go in to the doctor, good luck, and hopefully they drug ya up nicely! =)

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Hope all went well for you and let us all know how you are doing.

This is a great site for support.

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Hi Jill! I just wanted to let you know that I'm thinking of you and I hope everything went well. Keep us posted!

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How did it go, Jill?

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Hey Everyone!!

I cannot thank you enough for the posts. Such support is priceless

It went well. I don't remember the doctor feeding the scope down my throat. Here's the whole story.

My endoscopy was scheduled for 2:00, but the hospital had me arrive at 12:30 to complete all the necessary paperwork (sign here, sign there, blah blah.) I was then hooked to the original rehydration IV, adn the nurse had me repeat my name, SS#, and procedure to him (even thought it was on my bracelet). I sat and talked to my mom until two kids dressed entirely in red (candy stripers, I think) walked in, stopped in fron of me, and stared. "Is it time?" I asked them. They simply reached over and pulled the bars up on either side of the bed and started to wheel me away. My mother stopped them so I could take my glasses off( I usually wear contacts, but I figured it would be smart to leave them out). So then the two teen-aged red blurry things led me to the operating room. What was funny is that my vision is horrendous--nurses kept walking by me, smiling and saying hello. I couldn't see them, and I bet they wondered why I was "glaring" at people (mostly staring off in space because I'm as blind as a bat in a cardboard box). Finally, I went in. One nurse ran over another nurse's foot with my bed (haha!). Then they parked me next to the monitor, and my GI started asking me questions (did I know what celiac disease is, etc.) I told him I'd researched the disease online. He then said, "Well, young lady, tell us what it is you know and I'll grade you." He's such a nut! So I told him the whole wheat-sticking-to-villi crap, he gave me a "A" (haha!), and then began telling me of the risks involved with the procedure (intestinal tearing, hemorraging, etc.) What a time to tell a person! :lol: Then, a nurse in yellow (she's important--I remember her later ;) ), says "Have you had this procedure done before?" I say no, of course. She picked up an aerosol can with a bulb on the other end and told me to hold my breath and open my mouth as wide as I could. She sprayed this banana/paint thinner tasting Novocain into the back of my throat, and I swallowed (with what muscles in my esophagus could still move). She explained the whole scope business ( I couldn't even SEE the scope!!! The black blurry hissing snake on the little table thingy), to me, told me to turn on my left side, and said, "Jill, are you starting to feel sleepy yet?" I said, "I don't know, is the thing in my arm?" (the IV drip) "Yes," she answered. I then remember her saying, "Here's your mouth guard." (the tan plastic thing with the hole in the middle for the scope). Then, at some point, she held my head up and said something to me. I was so drugged up that I don't remember anything else until I saw people moving. I remembered that nurse's yellow shirt and had watched her moved further to the left when I "woke up". She walked over to me to push me out, and I said, "Are we done yet?" She said, "Yes," and pushed me back to the room I was in before the procedure. My GI came in and ten minutes later and showed me the pictures of my duodenum (lower portion of the stomach/beginning of the small intestine) and part of the small intestine. He said that portion was healed, but the intestine is often "patchy" (I may have damaged cells further down where the scope cannot reach). I thought, "they actually got those?" Since I didn't remember them getting the scope in, I was amazed they had for some reason :lol: My mom drove me home, and I reclined in the passenger seat. I came home at 4:00, ate scrambled eggs with cheese and had a bowl of Cream of Rice with butter, cinnamon, sugar, and Hershey's syrup (it sounds gross, but's it's delicious!! ) I went to bed at 7:00 pm.

The hospital called me today to ask if I was ok. I told the lady on the phone I was ok, but a little tired. Whatever is in that sedative, it makes you energetic the next day, because I spent two hours pulling weeds out of our flower beds, cleaned my bathroom, and swept grass off the driveway!!! And I was EXCITED about it! (how sad. I know I it's wrong to start a sentence with a preposition, but oh well!)

My GI said that even if my biopsy is negative, if I have the antibodies in my blood, I still have celiac disease. My parents and my brother are getting tested next Friday, and while they get bloodwork done, I'm getting my Thyroid checked!! Woo hoo! (I could live at the hospital!) He also said that I'm prone to Arthritis. Is that prevalent in young people with celiac disease!!

Take care and thank you VERY much for your support, :wub::wub::wub:

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My GI said that even if my biopsy is negative, if I have the antibodies in my blood, I still have celiac disease.

Jill,

Good for you! :D I'm glad it went so well and that your family members will be tested.

I am not surprised that your intestine showed that it has healed quite a bit in the three weeks being gluten-free.

I am so glad that your doctor is openminded about the negative biopsy, and it still being celiac disease! :) I wish mine was that open-minded!

God bless,

Mariann

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Wish mine was open minded like that too! Good everything went well for ya Jill. =)

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Jill,

I'm glad that your procedure went well! I must say, your recount of the endoscopy was quite humorous and I quite enjoyed reading it... perhaps because it brings back those foggy memories of my own! Did they use that "V" drug? Good that you got it in writing because the amnesia will take whatever memories you have left. I hope that they find no damage, but it's also great to hear that your doc would still consider you celiac based on your blood results.

Gretchen

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LOL.. after they were done with my endoscopy, I kept asking them for more drugs! Guess I was enjoying it, I was a bit out of it at the time. (=

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Glad it went so well!

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A detailed and at times, humorous story :D .

I'm getting my Thyroid checked!! Woo hoo! (I could live at the hospital!)

I know -- I feel the same way sometimes -- I've had the scope, sonogram, urine, stool, bone density, and nearly ten bloodtests.......it's crazy! :D.....I'm not sure if I have had my thyroid checked -- my new doc. is going to want it checked if I haven't done so already, but my old GI has to send the info. over to him....that might be why I'm not gaining a lot of weight. My mom has a slow thyroid (hypothyroidism?).......yet another reason to think she has celiac disease (bloating after lots of bread, hypothyroid thing, unexplained stomach pains as a youngster....hmm).

Thanks for filling us in--glad it went well :)

LOL.. after they were done with my endoscopy, I kept asking them for more drugs! Guess I was enjoying it, I was a bit out of it at the time. (=

:lol: lol...

-celiac3270

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Thanks again, everyone!!!

I don't know if it was Vicodin or not (the "V" drug.) Everyone just said, "sedative." celiac3270, hypothyroidism is the correct term. :) The opposite is hyperthyroidism. ;)

Hahaha :lol: I was too dazed to ask for more drugs. I wanted FOOD!!! I was hungry before the procedure, and starving afterward. I'm sure at that point, sawdust would have tasted like gourmet cuisine.

My GI is the best doctor I've seen. Granted, he is a specialist, so he doesn't remember my previous visit (for bloodwork), or that my father is also a patient of his. He calls all men "buddy" and me "the young lady", but he knows what he's dong and is extremely knowledgable about, in my opinion, one of the world's hardest diseases to diagnose. :ph34r: <--*Dr. Smith in his surgery mask* Speaking of which, I heard him tell one of the nurses how many cc's to give me of the drug ("Let's give this young lady 250."). He said it right before Yellow Shirt Nurse asked me if I was sleepy yet.

I'll post my biopsy results and keep everyone updated. I'll put my family members' results as well.

Thank you,

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I was too dazed to ask for more drugs.

LOL, I was really really dazed too. I barely remember asking for more drugs, but was told later I kept asking and asking, when they had finished.

Before my procedure when I was talking to the nurses, I saw the TV screen that would show my insides, and I was like, "Oh, I get to watch!" And a nurse replied, "Yeah, but you won't remember." And she was basically right. I do fately remember watching, but way too much of a blur, lol.

The last thing I clearly remember, was them telling me to open my mouth and bite down on that thingy.

Hopefully your biopsies shows you are messed up and have celiac disease! Normally a mean thing to hope, but a good thing for someone with celiac disease. =)

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Hahaha  I was too dazed to ask for more drugs. I wanted FOOD!!! I was hungry before the procedure, and starving afterward. I'm sure at that point, sawdust would have tasted like gourmet cuisine.

I didn't ask for drugs, either, but was really hungry after.....then again, breakfast is my largest meal by far and I had to skip breakfast, and it was already lunch time when they were done. :)

  :ph34r: <--*Dr. Smith in his surgery mask*

LOL.... :lol: this is one of those rare occasions when you can use that "smiley"

Hopefully your biopsies shows you are messed up and have celiac disease! Normally a mean thing to hope, but a good thing for someone with celiac disease. =)

Indeed.......

Once again, glad all went well. Please share the results with us :D

-celiac3270

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teehee, after my 4th biopsy 12 years after the diagnosis, my throat hurt a lot, (not nearly as much as it did after i got my tonsils out, then i kept asking for more drugs :)) but they wouldn't give me anymore. I was already checked into the hospital because I was haveing way thyroid problems, so I woke up and they wheeled me right to my room.

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Hey, hey, what can I say? I LOVE MY GLUTEN FREE FRIENDS!!!!

I actually thought my "Dr. Smith" mask was a ninja. I figured I'd be creative with that one. I'm sure my passion for writing came alive to readers when I posted my endoscopy experience. :)

I hope my intestines are more screwed up than they look...hahahaa...they're pink, and Dr. Smith says that's a good sign. Oh well.

If I had to guess, I'd say the family member who's the biggest candidate for celiac disease is my older brother. He has constant diarrhea, and is WAY more fatigued that I am now. What bothered me was that he said he wouldn't follow the diet if he was diagnosed. That was before Dr. Smith told the rest of my family to get bloodwork done, and now my brother is scared.

My parents are asymptomatic if they have celiac disease--they are disgustingly healthy ;) (that is, of course, in comparison to me).

Family updates will follow.

Thank you all for your kindness,

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my throat hurt a lot, (not nearly as much as it did after i got my tonsils out, then i kept asking for more drugs ) but they wouldn't give me anymore.

Ouch Molly! Though my throat felt fine. I just wanted more drugs! LOL

Wow, so your family is getting tested Jill? Mentioned to mine it'd be good if they got tested, but no one else has any symptons.. and knowing what the diet involves, they'd rather not know if they should get tested, lol.. oh well. Least if they start to develop symptons, it won't take them 10 years to figure out what's causing them.

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    • I can't believe your doctors!!! You have a daughter who is dx'd already! Yet the ped doesn't want to test your other kids unless you have a dx????!!! Are you kidding me???!!! That's absurd!!! They have a first degree relative who has been dx'd with celiac already. There is no need to wait to see what you turn out to be!! And then, and then, and then....don't even get me started on your doctor!!! Does he have brain damage? Oh this is insane & ridiculous!  I have never heard of a disease that doctors are so unwilling to consider or test for OR to diagnose as this one! Usually they are hot to trot to make a dx but say the word celiac & they shake in their boots. Grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr!!!!!!!!!!!!!!!!!!
    • I had a negative biopsy and was still diagnosed with Celiac. My GI ran a bunch of tests looking for the cause of my 15+ years of diarrhea and the only thing that came back positive was the entire Celiac panel. All very high. So he performed an endoscopy with biopsy. The biopsy was negative. So he ordered a genetic test. When that came back as "high risk" he decided a trial gluten free diet was in order. After 8 weeks my symptoms resolved and my antibodies were back to normal. Since then, follow up testing had shown I have osteoporosis. I am a 40 year old male.  So yes, you can definitely still have it and have significant damage with a negative biopsy. 
    • Pork Fried Rice  (Gluten Free, Dairy Free) Prep time: About 15 minutes Cook time: About 10 minutes Makes: 3-4 servings   Ingredients: 4 Pork Chops,  1/2 teaspoon salt 1/4-1/2 teaspoons black pepper 1/4-1/2 teaspoon red pepper flakes (optional) 1 Tablespoon Coconut Oil 1/2 large or 1 small onion 2 large carrots 2 cloves garlic, minced 1/4 green cabbage, very finely sliced 1-2 heads of broccoli, roasted and salted(optional) 2-3 eggs 2-3 cups cooked white rice  2 Tablespoons gluten-free Tamari or Coconut Aminos Sriracha (optional)   Instructions: 1. Cut pork chops into small bite sized pieces.  2. Next add a tablespoon of coconut oil to a large wok and heat on medium-high heat for a about a minute.   3. Add your chopped pork chops to the wok and season with the salt, black pepper.  Cook for about 6-8 minutes or until lightly browned. 4. While your pork chops are cooking, dice your onion, mince your garlic cloves, chop your carrots and finely slice your cabbage. 5. Once your pork is lightly browned, add all your veggies and stir fry over medium-high heat fro about 5 minutes. 6. Make a hole in the middle of your veggies and add your eggs.  Scramble your eggs with a big metal spatula until they are cooked and then mix everything together. 7. Add your cooked rice and about 2 Tablespoons of Tamari. Mix everything together and cook for another 3-4 minutes or just enough to warm up the rice.
    • Annual celiac antibody testing is, in my opinion (and based on what celiac researchers have published), is critical, especially for a 12 year old.  Life is going to get harder for her.  Peer pressure is huge (I have a 15 year old daughter), and remaining diet compliant can be tough.   In Dr. Fasano's, Gluten Freedom, he discusses a young patient who became ill in high school after being gluten free for years.  His parents were perplexed.  Dr. Fasano took the young man aside and he confessed that while on a date, he didn't want to bring up his celiac disease.  So, he ate pizza.  He was too embarrassed to tell his parents.   My daughter does not have celiac disease.  She was first tested two years ago.  Since she is symptom free, is not anemic and her other lab work is fine, we'll wait to test her in another year.  It all depends on the patient, but every few years, testing is recommended for all undiagnosed first-degree relatives.   It certainly sounds like your younger children should be screened.   I wish you both well!      
    • Perhaps you should consider asking for a GI referral.  You might just skip the blood tests and go directly to an endoscopy/biopsies while you are still consuming gluten.  It is the "gold" standard for a celiac diagnosis anyway!   Here's the deal with going gluten free.  You can do it.  It costs nothing, but you must give it six months or longer.  You'd need to think like a celiac, but it can be done!  I'll tell you my tale.  My hubby went gluten-free 15 years ago per the very poor advice of his GP/PCP and my allergist.  After a year of mistakes and learning, he got well.  It worked!  Thirteen years later, I was formally diagnosed.  (It was a shock as I was only anemic at the time.)  Hubby would be the first to say that I have had way more support from family, friends and medical.  I must say, it's nice to see those lab results.  It really helped me adhere to the diet in the beginning too.   So, you know your medical situation.  You must do what's best for you!   I hope you feel better soon!  
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