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Jenybeen

I'm A Wreck...

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I am so nervous. Isaac has his procedure in the hospital tomorrow. He'll be having an endoscopy and colonoscopy. I have never been put under anesthesia, and I am going to put my 5 year old under tomorrow. I am so uneasy about that. I was crying last night. My hubby said if I this nervous about it, then maybe we shouldn't do it. But it needs to be done, I need to know why he has the problems that he has. If we don't know what's wrong, then we can't fix it. Right? I am also feeling like I want to be in the room when they are doing the procedure, even though I know that's not going to happen. I just don't want to leave him. They said it shouldn't take longer than an hour...but still.

Isaac is home from school today because he is fasting and also has to take magnesium citrate which will "clean him out". He is kind of frustrated that he can't eat, but he's had jello and 7UP and a popsicle, so he isn't starving. His teacher is putting together a packet of the work they are doing today, and we'll pick that up when we pick up his big sister. That should give him something to do to keep his mind off food. Hopefully.

That's all...I am just nervous and needed to vent. Thanks for listening.

Jennifer

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will be thinking of you and your son tomorrow.

let us know how he does, and you too Mom.

judy in philly


Judy in Southern CA

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I am so nervous. Isaac has his procedure in the hospital tomorrow. He'll be having an endoscopy and colonoscopy. I have never been put under anesthesia, and I am going to put my 5 year old under tomorrow. I am so uneasy about that. I was crying last night. My hubby said if I this nervous about it, then maybe we shouldn't do it. But it needs to be done, I need to know why he has the problems that he has. If we don't know what's wrong, then we can't fix it. Right? I am also feeling like I want to be in the room when they are doing the procedure, even though I know that's not going to happen. I just don't want to leave him. They said it shouldn't take longer than an hour...but still.

Isaac is home from school today because he is fasting and also has to take magnesium citrate which will "clean him out". He is kind of frustrated that he can't eat, but he's had jello and 7UP and a popsicle, so he isn't starving. His teacher is putting together a packet of the work they are doing today, and we'll pick that up when we pick up his big sister. That should give him something to do to keep his mind off food. Hopefully.

That's all...I am just nervous and needed to vent. Thanks for listening.

Jennifer

Well, I don't have children, so I can't really say I know how you feel, but I just wanted to offer support, and to say that I DID have both procedures done at the same time...it really wasn't bad at all...the cleaning out process that he's going through now is the worst part! The IV was the next worst. The nurses and doctor were very kind and gentle with me, lol.

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Jenybeen,

Good luck! I know it is hard. Please know that we are thinking about you and your son. Write and let us know how it goes. This process is frustrating, but you are being your son's best advocate and helping him lead a healthy life. Love him lots today....and we'll keep you in our prayers tomorrow!

Laura

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You will be in my prayers. I know how frightening it is when a child has to have tests done. When my children have had tests and surgeries I just prayed alot before hand and took puzzle books or reading with me to TRY to pass time. Just make sure to take care of you too because he needs you strong.


jennyj

Diagnosed March 2006 celiac sprue

Severe iron deficent anemia Jan 2002

Hypoglecemia 2000

"I can do all things through Christ who strenghtens me"

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I'll be praying for you both. My son has had 3 scopes and my daughter 1. I too was nervous, but they really aren't bad at all. We only had to leave them for the few minutes it took to do the scope and then was right back with them. It's pretty simple and will be over quickly. the worst part for my son was the IV, but that wasn't bad either. good luck!


If you're looking for info on how to get started on the gluten-free diet, check out this List for Newly Diagnosed.

Self - Pain free since going gluten-free 9/05 (suffered from unexplained joint pain entire life), asthma improving, allergies improving, mysterious rash disappeared (probably DH)

Husband - Type 1 diabetic, Negative bloodwork

Son - Elevated IgA, Very high IgG, 2 negative biopsies - HLA DQ2 and DQ8 positive, Amazing dietary response since 1/06

Daughter - Congenital Heart Defect (2 surgeries), Reflux, choking issues, eczema, egg allergy - HLA DQ2 positive, Good dietary response (via me because of nursing) since 9/05

"All things happen for good for those who love God..." Romans 8:28

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Hi, just want to offer that my son, 4 at the time, went through both procedures and was fine. They didn't even start the IV until he was completely out. The only discomfort he did have was the gas after the colonoscopy in which case he kept thinking he had to poop. I think he was more tired and frustrated that in any pain. Good luck, let us know how it goes.

Nicole

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I will keep you and your son in my thoughts.

I remember how difficult it is when it's our little one who has to undergo a procedure. I'm sure everything will go smoothly--I had both done the same day, and felt absolutely fine when I woke up and didn't remember a thing.

Try and relax, he's going to be fine :)


Patti

"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

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We're home! And sooner than we expected, too. Isaac did really well. He screamed when they were placing the IV, but he was fine as soon as it was done. Watching him be put under anesthesia was the most difficult thing I have ever had to watch. First he was yawning, then he started screaming for Zachary (his brother), it was so weird. He was obviously hallucinating. That's when I broke down. I let my hubby hold him after that, because I just couldn't do it and I didn't want Isaac to freak out if he saw me crying. He was almost in a panic as it was. By the time he calmed down and fell asleep, hubby and I were both in tears.

After he was asleep, we went to the waiting room. My mom treated us to breakfast at the little cafe. I couldn't eat, of course, lol. After about an hour and 15 minutes, then came and got me, said he was crying for me. My hubby had to stay in the waiting room. On the way to go see him, the nurse said that he woke up right as they finished the procedure. I could hear him crying from down the hall. It was heartbreaking. He wasn't even fully awake, and was crying "Mommy, mommy" even though I was right there rubbing his hair and shushing him. I cried again. I didn't like seeing him like that all! He said he had to go the bathroom, so they unhooked him from everything and I carried him to the restroom and helped him. After that they gave him a popsicle and some stickers and removed his IV.

His doctor showed me some pictures and said that everything looked ok, except he had swelling in his small intestine. The took biopsies of the small intestine and his colon. We should have the results in 3 days. Isaac doesn't remember much, he just keeps asking me where I was when he woke up. He also keeps asking if I am proud of him because he was brave! So cute...I am. :-)

Whew! What an experience. I hope we never have to do that with any of our other kids. The procedure is a piece of cake, it's getting them there that's the hard part. I'll let you all know what we find out about the biopsies.

Thanks for all the prayers, positive thoughts and support!

Jennifer

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Glad that it went smoothly and that it's over! Hope you get some answers.


Liz

Started Specific Carbohydrate Diet on 8-16-09 because son was diagnosed with Ulcerative Colitis and want to give him moral support.

Diagnosed with Minimal Change Nephrotic Syndrome in 2003. Discovered that going completely gluten-free put me in remission.

I would have despaired unless I had believed that I would see the goodness of the Lord in the land of the living. Psalms 27:13

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That is great! Its amazing how well kids hold up and he probably won't remember much about it. Life goes on. Its always us adults that worry!

Happy to hear everything went well. Let us know the results. xoox

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I just saw this Jennifer.

I'm glad to hear that everything worked out for all of you. I can imagine I would have been a crying mess...I cry very easily.

I will be waiting for his results as well.

Yes, he was brave and did good. :)


Andrea

Enterolab positive results only June 06:
Me HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0301; Serologic equivalent: HLA-DQ 2,3 (subtype 2, 7)
Husband HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0302; Serologic equivalent: HLA-DQ 2,3 (subtype 2,8)



The whole family has been soy free since February, gluten free since June 2006.

The whole family went back to a gluten diet October 2011.  We never had official testing done and I decided to give gluten a go again.  At this point I've decided to work on making some gluten free things again, though healthwise everyone seems to be fine.  The decision to add gluten back in was also made based on other things I'd read about the 2nd sequence of genes.  It is my belief that we had a gluten intolerance, but thanks to things I've learned here, I know more what to keep an eye on.  If you have a confirmed case of celiac, please don't go back to gluten, it's a lifelong lifestyle change.

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Glad to hear it all went well Jennifer! Hopefully this is it for testing for a while! I do think it's very scarey for the little ones to be in that strange environment, but I love his comment about being brave, that is priceless!!!

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I am so glad that it went okay! What a brave little boy!


Kim

"Life isn't about how to survive the storm

but how to dance in the rain."

Positive bloodwork 1/9/06

gluten-free since 1/12/06

Very positive dietary response

DS (12 years old)

Biopsy 7/7/06 ~ Diagnosed Celiac 7/12/2006

gluten-free since 7/15/2006

DD (almost 6)

HLA-DQ2 positive

Celiac Bloodwork negative 2 different times

Still eating gluten for now.

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I'm glad everything went well!


Danielle

Diagnosed with Celiac 1/3/06 at age 20

Also dairy free and soy light

Guardian to 3 boys, ages 4, 3, and 2 who are gluten-free, df, corn free, and soy light

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Hi Jennifer,

Glad to hear that it went well for your child. My daughter had her endoscopy/biopsy on Mon this week, and my son has his procedure next week. So we've got 1 down and 1 to go.

The IV was the worst part for my daughter- I expected that it would be and requested some lidocaine cream to apply to her arm before we went into the hospital on Monday (a tip I read about in Danna Korn's book). But she still got upset about having the IV put in. I just held her and kept telling her what a good job she was doing.

I also asked to have a TV for her to watch while they were inserting the IV- unfortunately, there weren't any TV's available but they got one for her to watch soon afterwards and brought a Clifford video (she's 5 yrs). A recent study found that kids reported less discomfort with medical procedures if they were watching TV.

My daughter was really funny as she came out of the anaesthetic (ketamine)- she kept telling everyone that they had 2 noses. I'm glad it's over and I'll be REALLY relieved once my son's procedure is done too.

Suzie


Suzie

London, ON, Canada

celiac disease diagnosed by pos tTG March 2006 and pos biopsy June 2006

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In july We put my 2 yr old daughter out and it really is the hardest thing. She didn't scream though. It was real sad because righht as she was going under she said in the faintest saddest voicve Mommy. I lost it and broke down. It took a total of about 15-20 seconds before she was out.she looked at me with the mask on and looked fine then the anesthesiologist looked at her and moved her quickly to the laying dowm position and she was out,even though her eyes were still open. I am glad it is over. But now my 7 yr old is most likely going to be doing the same thing probably in nov. Because she tested high for celiac also. Where she had the testing her nor should have been <4 and they were 32.?

Celina

Nicole

alivia


Nicole- 3 yrs old Positive Celiac Blood test- 6/21/2006 //// Normal result: <20,,,Nicole-80

Positive Biopsy for Celiac- 7/17/2006

Gluten-Free Since - 7/22/2006

Alivia- 7 years- old Positive Celiac blood test-Aug. 2006////Normal result:<4,,,Alivia-32.

Biopsy showed positive for Celiac Disease and moderate to severe damage (Blood Work for both girls were done in different labs that is why they are different)

Gluten free since:Dec.2006

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Hear anything back yet?


Nicole- 3 yrs old Positive Celiac Blood test- 6/21/2006 //// Normal result: <20,,,Nicole-80

Positive Biopsy for Celiac- 7/17/2006

Gluten-Free Since - 7/22/2006

Alivia- 7 years- old Positive Celiac blood test-Aug. 2006////Normal result:<4,,,Alivia-32.

Biopsy showed positive for Celiac Disease and moderate to severe damage (Blood Work for both girls were done in different labs that is why they are different)

Gluten free since:Dec.2006

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Hear anything back yet?

Thanks for asking...been so busy I forgot to update you all. Well...we don't really have any answers, but this is what we know:

Isaac has chronic inflammation of the stomach and excessive stomach acid so he is being put on Prevacid. The colon biopsy came back ok with the exception of a high level of eosinophils (a type of white blood cell) which signifies allergic reaction, I guess. We think that means he is somehow getting something that he is allergic to in his system. We already know Isaac is severly allergic to milk and peanuts, he has been since he was a baby. I try to eliminate anything with even the tracest amount of milk in it, but maybe I am doing something wrong. And I know he isn't getting any peanuts...he wouldn't be breathing if that were the case.

The intestine biopsy showed no signs of celiac, but the doctor doesn't want to rule it out until the blood tests are back (which as of today, they are NOT and it's been over a week.) He said sometimes they could have gotten a "good" piece of intestine that doesn't show celiac, and there are good areas and bad areas. Something to that effect. The doctor said we haven't ruled out Crohn's Disease yet either, but with the biopsy, it doesn't look like it is Crohn's.

The doctor wants him to start drinking elecare, a milk substitute. He said the rice milk that Isaac has been drinking may have milk protein in it. I don't know how accurate that is though, because you would think it would be labeled on the carton and it says dairy free. Our main focus right now is to increase Isaac's caloric intake and control the stomach inflammation.

I am not satisfied with what we know...something is missing. I don't know what. I hope the blood results give us more of picture of what's going on. I just wish we could "fix" him.

Jennifer

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Jennifer,

It must be difficult with nothing conclusive to go on yet. I hope they help you get the problem sorted out. It's hard knowing that something is wrong with your child but not knowing exactly what the problem is.

My son had his endoscopy/biopsy yesterday...... BIG SIGH of relief!!!!!!!!!!

It all went well. We'll get the pathology report back within about 2 weeks- but both my kids are starting their gluten-free diet right away. They both had very obvious changes that could be seen with the endoscope- in the proximal part of their intestines there was a lot of nodularity (lumpy, bumpy stuff) and pathes of red, inflamed tissue too.

My son was surprised when I told him that his proxmal intestine had at least as much nodularity as his sister's. She has some symptoms and he doesn't.


Suzie

London, ON, Canada

celiac disease diagnosed by pos tTG March 2006 and pos biopsy June 2006

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