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LauraW

We Did The Biopsy....thank Goodness It Is Over

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Hey Everyone!

Wanted to give you guys an update on the biopsy yesterday. Well, thank god it is over. That is all I can say. Now...let me just say I hope I never have to do that again with my child, by far it was the worst day of our life yesterday. So traumatic on Ainsley (my daughter), me and my husband (he could barely hold back the tears). I will say it was very short (like 15 minutes total) and no pain at all afterward or any side effects whatsoever, but let me tell you about the I.V. It sucked big time!!!! From the second we got back to the area with beds where they prep you, she was terrified saying she was scared screaming hysterically (which I could not help but cry myself) even when they put the gown on her or put the toe thing on her to read her stats, it didn't matter, she screamed. THen they took us to the operating room, where she freaked out even more and I started to lose it myself. THey did not mask her first b/c evidentally it is a different anesthesia which can be a bit riskier and this hospital won't do it that way. Who knows if there is truth to that or not. So everyone basically held her down while she screamed for her daddy (god it was heartwrenching), but as soon as the IV went it, they put the meds in her and she was out and when she woke up she was great and did fine the rest of the afternoon as if nothing had happened. The amount of guilt you couldn't even put into words but the dr was great and made us feel much better about it. Because I explained that my parents were not supportive and basically think this is nonsense and that they can't believe I would do the biopsy. He said "well, you can do several things: one, ignore the bloodwork and not do the biopsy and she might get sicker and not grow properly, you can not do the biopsy and do the diet when you might not have to if the test is negative or do the biopsy and we can see what is going on and you can be at peace with a relatively certain diagnosis and move forward". He said he has a 3 year old and a one year and wouldn't think twice if he suspected they had it. I needed to know, b/c not all of the bloodwork came back + but there are indicators of celiac in her Igg and immunoglobins that say she could have this. Some people would disagree with my decision, but I just prayed alot and came to peace with the fact that life does have certain risks in it and that I needed to do this to get more information to best take care of my daughter and thankfully in my case, there were no complications. Afterwards, he said that the intestine looked relatively normal, however, he thinks she probably does have celiac disease and that her stomach looked a little pale and that he took a biopsy of that as well to be on the safe side. That also made me feel more at ease about my decision to do it b/c what if something is wrong with her stomach and we never knew. Anyhow, we should know something on Tuesday so I will keep everyone posted. Oh and my mother is still hardly speaking to me b/c of all this. Quite ridiculous really.... I just want to thank you guys for the overwhelming support and kind words you have sent our way. It has made this very stressful time easier and hopefully kept me from going into labor early. Which yesterday, there were a couple of moments I thought they might have to go ahead and admit me.

Laura

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Well, you got through it and it's done now so well done!!!

My son had his 2 weeks ago (came back positive) and I know what you mean about the guilt.

I felt terrible putting him through that - even though he was fine throughout and after (one of the pitfalls of being a parent I think!!!)

For me I felt I had to know for sure before committing him to a life long diet - I hate uncertanties!!! :unsure:(my son only had mild symptoms)

Be sure to let us know the results !! :)

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Laura, I am glad you got through this, and that your daughter is fine. Your doctor sounds great, that is always nice.

I hope that you get the answers you're looking for. Are you going to start your daughter on the gluten-free diet now? Since she's had the biopsy, there is obviously no need to wait.

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Laura,

Thank you so much for the update. That IV situation would have been hard for any parent to deal with. It's always hard when our kids scared and/or hurting.

I will be watching for your update on Tuesday.

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I am glad that it is all over for you. Don't you wish we could be as resilient as children.

I am wondering if the reason your Mother is not speaking to you is because you have been diagnosed with Celiac. And there is guilt on her behalf because she did not know this and get you tested, when you were a child. You are now testing your child which shows your strength. And she might be feeling that she fell short as a Mother. Just pseudo babble on my part.

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Oh Laura, I'm glad it's done with and she was fine afterwards! How hard it must have been to see her so scared and upset!

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How awful for you, but as long as she is fine now, there is no need to feel guilty.

It does seem a bit strange, that the doctor didn't really see anything unusual but still think she has celiac--obviously he didn't need to do the biopsy to arrive at that conclusion. But, as you said, at least he got a look around to rule out anything else.

I'm so sorry your mother is not being supportive of you. It's one thing to disagree with your decision--that's certainly her right. But to carry a grudge over a disagreement, especially when there weren't any long-term problems with the procedure--that's just punishing you, and I don't think she has THAT right.

Probably she was just angry, frightened, and also having some residual guilt at not having diagnosed you correctly, and she simply isn't capable of dealing with all that right now. I hope you can manage to give her some space and forgive her for her inadequacies--it's always hard to forgive a parent for not living up to our expectations, isn't it?

Hopefully, she'll be able to pull herself together and be there for you after she gets past this.

In the meantime, put your feet up, rest, and read some good gluten-freee cookbooks! I think it's great that the answer is as simple as a diet change--no medications to tinker around with and give side effects! And you can still make chocolate chip cookies, the world's best comfort food! :)

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Just wanted to let you know that my 10 year old had a terrible experience with her biopsy just last May! The IV was the easy part. When I went back to the operating room with her they gave her the gas mask and she kept reaching out for me with her wide-open scared beautiful blue eyes. It was the most painful image in my mind. Recovery was awful. She had this awful stench and the nurse just said she was passing gas from the gas they gave her. Well no, she had actually pooped a bit in her panties and then she began to vomit several times. They had to give her a supository before we could take her home and she still vomitted in the car! Doctor said that everything looked great could not see any signs of damaged villi in the small intestine. ..... Days later results came back positive..... in fact advanced celiac disease, villi were totally atrophed.

Kathryn has always been very petite. She is about the size of a six year old and she is in the 5th grade. Since starting the gluten free diet, she has started to grow. Endicronologist has not ruled out growth hormone deficiency. We go back to MUSC Children's hospital this week for a follow up.

Finding out last May felt like mourning the loss of a lost one. We were all in shock for a couple of weeks, but we've come to grip with it and Kathryn is such a trooper. Birthday parties, class parties and sleepovers are a little hard. She handles them better than me. I just try to send something she can eat too!!

Hang in there. It is manageable!!!!

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Congratulations on getting through a hard experience! I think your decision was a wise one, to go ahead and get the biopsy. Only the slides of the tissues will tell you much, although a good-looking view on 'scope is a good indication that nothing else is wrong. And remember, since the biopsy sites are selective, you could get a "no damage" result and still be looking at celiac (it's always something, isn't it?)

Ignore your mother. Or stick your tongue out at her! All of us who have been in the gluten-free world for a while will confirm that there is ALWAYS someone who doesn't believe you, tries to feed your kid bread, tells you about the miraculous cure, undermines your approach. They don't know nuthin! We're behind you!

...And on that last note, I leave you with this scenario: when my son was a babe, he reacted to some foods. He got terribly constipated. He had terrible gas. He was tiny, and slow-growing. At 4, we saw a specialist (who did NOT mention Celiac) but I was so scared of a colonscopy/upper GI that we sighed with relief when the doctors didn't insist. Fast forward to age 9 --- he's losing weight massively( 48 pounds at his worst, when normal was about 70) , missed a year of school, spent 2 months in the hospital, had 8 million invasive tests and 4 million IVs, a picc line, a devastated GI system, and ALL his body fat and muscle were burned up by untreated celiac. I don't blame myself -- how could we have known? -- but look at how brave you were, to possibly save your daughter all of that heartbreak at the small cost (relatively). Be proud of yourself for stepping up and doing the hard -- but healthy -- thing.

joanna (mom of a normal weight, tall-as-me, eating machine of a 13 year old who happens to also have Celiac)

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Congratulations on getting through a hard experience! I think your decision was a wise one, to go ahead and get the biopsy. Only the slides of the tissues will tell you much, although a good-looking view on 'scope is a good indication that nothing else is wrong. And remember, since the biopsy sites are selective, you could get a "no damage" result and still be looking at celiac (it's always something, isn't it?)

Ignore your mother. Or stick your tongue out at her! All of us who have been in the gluten-free world for a while will confirm that there is ALWAYS someone who doesn't believe you, tries to feed your kid bread, tells you about the miraculous cure, undermines your approach. They don't know nuthin! We're behind you!

...And on that last note, I leave you with this scenario: when my son was a babe, he reacted to some foods. He got terribly constipated. He had terrible gas. He was tiny, and slow-growing. At 4, we saw a specialist (who did NOT mention Celiac) but I was so scared of a colonscopy/upper GI that we sighed with relief when the doctors didn't insist. Fast forward to age 9 --- he's losing weight massively( 48 pounds at his worst, when normal was about 70) , missed a year of school, spent 2 months in the hospital, had 8 million invasive tests and 4 million IVs, a picc line, a devastated GI system, and ALL his body fat and muscle were burned up by untreated celiac. I don't blame myself -- how could we have known? -- but look at how brave you were, to possibly save your daughter all of that heartbreak at the small cost (relatively). Be proud of yourself for stepping up and doing the hard -- but healthy -- thing.

joanna (mom of a normal weight, tall-as-me, eating machine of a 13 year old who happens to also have Celiac)

wow...hearing that story makes me so thankful that her pediatrician thought to even run the bloodwork on her. Because that would be horrible for that to happen 6 years down the road. My mom, on the other hand, has made snide comments about the ped even checking for it saying "I guess they are just sooo afraid of getting sued these days, that they have to do that". Can you believe it???? We should be kissing his *** thanking him for being knowledgeable to even screen for it. You're right, I am ignoring it and moving on. With or without their support. I was reading my new gluten freen cookbook today and alot of the recipes called for gluten free flour or how to make gluten free flour. Can you just buy the gluten free flour premade? I hope so or I'm in deep, cuz I ain't no Betty Crocker! Thanks for your story.

Laura

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Hi Kathryn's Mommy, and welcome to this board. What a horrible experience you had! But I am glad Kathryn is fine now. Who knows, she might end up being a relatively normal height in the end. But being healthy is the most important thing, being petite isn't too terrible for a woman.

Laura, you can get quite a few pre-made flours. The good thing about making it yourself is, that you can substitute if there are other intolerances, and it's much cheaper, too.

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Just wanted to let you know that my 10 year old had a terrible experience with her biopsy just last May! The IV was the easy part. When I went back to the operating room with her they gave her the gas mask and she kept reaching out for me with her wide-open scared beautiful blue eyes. It was the most painful image in my mind. Recovery was awful. She had this awful stench and the nurse just said she was passing gas from the gas they gave her. Well no, she had actually pooped a bit in her panties and then she began to vomit several times. They had to give her a supository before we could take her home and she still vomitted in the car! Doctor said that everything looked great could not see any signs of damaged villi in the small intestine. ..... Days later results came back positive..... in fact advanced celiac disease, villi were totally atrophed.

Kathryn has always been very petite. She is about the size of a six year old and she is in the 5th grade. Since starting the gluten free diet, she has started to grow. Endicronologist has not ruled out growth hormone deficiency. We go back to MUSC Children's hospital this week for a follow up.

Finding out last May felt like mourning the loss of a lost one. We were all in shock for a couple of weeks, but we've come to grip with it and Kathryn is such a trooper. Birthday parties, class parties and sleepovers are a little hard. She handles them better than me. I just try to send something she can eat too!!

Hang in there. It is manageable!!!!

That is horrible!!!!! Why in the world did they give her a suppository? I am glad she is okay and things seem to be looking better for her. It breaks your heart to see your kids go through something traumatic. And it looks like it doesn't get any easier the older they get. I am petite and my daughter is very petite as well. Still wearing 12 month clothes. Good luck next week for the follow up. Keep us posted!

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When I first went gluten free, I found a recipe for a gluten-free flour mix. I made a double of it and stored it in the freezer. It was easy to just take out what I needed without always having to make more. I have bought some pre-mixed gluten-free flours but have not used them yet. And I am also not a Betty Crocker.

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I'm sorry it was hard, but glad it's over now. I hope you can get some definitive results from it. That was the hardest part for us, still not knowing b/c it was negative. I pray your Mom comes around soon. Like I said on the other thread, if she improves as much as my son did your Mom will be on board in no time.

As for the flour, I LOVE to cook, but I'm no baker. I've found that buying Pamela's gluten free Baking and Pancake mix is a lifesaver for me. I get it on Amazon and it's much cheaper. There are a lot of other mixes on there too that are very good. I have a list that I did for my son that might be helpful for you. Just PM me if you want it. My daughter's in the hospital a lot and I did it for people who keep him to be able to handle his issues.

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Laura, if it's an consolation, I feel like I have BECOME Betty Crocker because of this diet! It's SO much easier than I expected, and it's actually fun (really)!

There are premade flour blends available--get them the first few times and then make your own, you'll save a fortune.

I went to Sam's Club and found these wonderful clear plastic food-grade storage boxes that hold about 20 cups worth of flour blends. I bought 2--one holds the bread flour mix, the other holds the cake-and-cookie flour mix (both based on Annalise Roberts' cookbook, Gluten-Free baking Classics, which makes the best breads and cakes I've ever made in my LIFEW, including the gluteny stuff). For pancakes, I have a great recipe derived from one onwww.celiac.com--I open and label a bunch of quart-size ziploc bags, and measure out all the dry ingredients for say, 8 bags at one sitting. Then, all I have to do is add the eggs and milk, etc. Here is my pancake recipe:

gluten-free PANCAKES OR WAFFLES

Mix in bowl:

½ C brown rice flour

½ C white rice flour

½ C potato starch

¼ C Tapioca starch

¼ C cornstarch

1 Tablespoon baking powder

2 Tablespoons sugar

1 teaspoon xanthan gum

½ teaspoon salt

Mix in second bowl:

1 ½ Cups buttermilk

3 eggs (2 for waffles)

4 Tablespoons oil (6 for waffles)(I use canola)

1 teaspoon vanilla

Mix wet and dry ingredients together and make your pancakes (or waffles)!!!

I raised my eyebrows at the amount of oil going in, but it comes out perfect.

Oh--one last thing--you can get white rice flour, tapioca flour, potato starch,a nd cornstarch at any Asian grocery store. I live in Pittsburgh, which is not the hugest city around, and we have at least 7 of them. Ask at your local Chinese restaurant if they know of an Asian grocery store near you. It's worth it to drive a few hours to stock up if you have to. The Asian grocery charges 69 cents a pound for white rice flour, and my local supermarket sells it for over 3 DOLLARS a pound. Same with the cornstarch, potato starch, and tapioca flour.

Betty Crockering is so much easier than I'd expected--you just have to take your time, clear your kitchen table and work on that so you have lots of space, and organize it all in advance. I have a cheapie dollarsotre plastic basket that I keep all my pancake mix bags in, otherwise I'd end up with plastic bags getting squooshed and blasting flour everywhere.

Before you think I'm the picture of organization, I'm not. The only thing in my kitchen that is reasonably organized is the gluten-free stuff!! :lol:

I know this sounds sick, but I actually had FUN getting it all set up. In a weird way, it really helped me feel like I had some control over my life....

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That is horrible!!!!! Why in the world did they give her a suppository? I am glad she is okay and things seem to be looking better for her. It breaks your heart to see your kids go through something traumatic. And it looks like it doesn't get any easier the older they get. I am petite and my daughter is very petite as well. Still wearing 12 month clothes. Good luck next week for the follow up. Keep us posted!

To stop the vomiting, I would imagine (suppository).

This was probably a reaction to anesthesia. My DH did the same after eye surgery years ago. He was SO SICK.

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Wow, you had a terrible experience, and I would blame that hospital too. I took my son to Children's in Pittsburgh and they were nothing like that. They should not have put an iv in her without the sedative, and they definitly shouldn't have brought you back to the operating room! That's just nuts! Of course you are going to get emotional, and that will make her more emotional, that's why they are supposed to take her back themselves while you wait out in the waiting room. I'm sorry you had a bad experience. I promise not every place is like that. They don't sounds like they know how to deal with kids that well. Was it a regular hospital or Children's?

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Wow, you had a terrible experience, and I would blame that hospital too. I took my son to Children's in Pittsburgh and they were nothing like that. They should not have put an iv in her without the sedative, and they definitly shouldn't have brought you back to the operating room! That's just nuts! Of course you are going to get emotional, and that will make her more emotional, that's why they are supposed to take her back themselves while you wait out in the waiting room. I'm sorry you had a bad experience. I promise not every place is like that. They don't sounds like they know how to deal with kids that well. Was it a regular hospital or Children's?

It was a regular hospital. Looking back on it, we probably should have gone to a children's hospital. If we had it to do over, I would have gone to a children's hospital. It never occured to me that it would be that different at a children's hospital. The I.V. part I'm sure would have been easier, however, even at a children's hospital, she would have screamed just seeing a nurse. I'm telling you, any medical office or hospital, nurse or dr, she screams bloody murder. As far as taking us back to the operating room. It's a catch 22, b/c you don't want your child to be scared without you, but on the other hand, as you said, she see's me upset, my husband who is barely, I mean barely, holding it together, and that scares her as well. I just want to put that part out of my mind, and hope she doesn't remember it.

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It was a regular hospital. Looking back on it, we probably should have gone to a children's hospital. If we had it to do over, I would have gone to a children's hospital. It never occured to me that it would be that different at a children's hospital. The I.V. part I'm sure would have been easier, however, even at a children's hospital, she would have screamed just seeing a nurse. I'm telling you, any medical office or hospital, nurse or dr, she screams bloody murder. As far as taking us back to the operating room. It's a catch 22, b/c you don't want your child to be scared without you, but on the other hand, as you said, she see's me upset, my husband who is barely, I mean barely, holding it together, and that scares her as well. I just want to put that part out of my mind, and hope she doesn't remember it.

Childrens hospitals are a A LOT BETTER. when i had my tonsils out at a regular hospital it was terrible, they used an IV needle for adults and I was 11 at this time and under 5 feet and about 80 lbs. and they didn't use gas they just did the IV, they took me back into the OR and then sedated me.

In childrens they sedated me before I went into the OR, much better so you don't see all the tools and such. They used gas also and they used a tiny IV needle that doesn't hurt.

Just for further reference always go to a children's hospital if possible, it makes it a lot easier on everyone, and they are trained to work with crying children a lot more than the adult nurses.

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I think it totally depends on the individual hospital. My son had two cardiac procedures, one at a regular hospital, where the doctor made sure I could holdand nurse my son as soon as he came up from the recovery room. The other was at Pittsburgh Children's Hospital, where they would not let me hold or nurse him at all. They said I could pump my milk and hold a bottle for him--AFTER he kept down apple juice, even though I insisted that he always got diarrhea from apple juice.

It took the doctor from the first hospital to come visit, yell at the nurse, and tell her that HE knew that had waiver forms that I could sign, and that she should get me a form, and then get me a bed so I could sleep holding my son instead of making him stay in that horrible metal cage they called a crib.

That was 9 years ago, so I would hope things are better now, but you never know.

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Oh JEEZ, I have been pushing for the biopsy for our little one now for a year. Last year I was told I was unreasonable to expect them to order the test just because I had Celiac and she had what I thought were symptoms. (Vomits freq. weight is at 29 pounds, below the 5% in height, headaches and she is only 5 years old, mouth sores, windy, says she has "sick-ups all the time etc..) Finally she is scheduled for it next week. I had not though it would be so terrible for her. I have had two of them and where I was at they were generous with the medication. We are going to Children's Hosp. for the scope and a MRI within the next week. This has been going on now for 2 and a half years. But because her blood work did not confirm the Celiac they decided to do tons of other tests to rule out eveything else.

Say a prayer for her on the 8th and 13th.

Laura

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Oh JEEZ, I have been pushing for the biopsy for our little one now for a year. Last year I was told I was unreasonable to expect them to order the test just because I had Celiac and she had what I thought were symptoms. (Vomits freq. weight is at 29 pounds, below the 5% in height, headaches and she is only 5 years old, mouth sores, windy, says she has "sick-ups all the time etc..) Finally she is scheduled for it next week. I had not though it would be so terrible for her. I have had two of them and where I was at they were generous with the medication. We are going to Children's Hosp. for the scope and a MRI within the next week. This has been going on now for 2 and a half years. But because her blood work did not confirm the Celiac they decided to do tons of other tests to rule out eveything else.

Say a prayer for her on the 8th and 13th.

Laura

Hi Laura,

I will definitely pray for you and and your daughter next week. If they don't have to put the IV in when she is awake, then the procedure shouldn't be bad at all. My daughter has been to the doctor so much since she was born, she freaks out when we are on the street headed to the dr's office (she is very perceptive for a 2 year old). So basically, she screams when she see's nurses, dr's, hopsitals, etc... But the procedure wasn't bad at all. She was only out for about 30 minutes, the procedure took about 10 minutes, and she felt great afterward, no pain or irritability at all. Here's the kicker though...the doctor called on Wed to say test was negative (he did say after biopsy he thought for sure she had it) and that he doesn't think we should do the diet unless her symptoms come back or get worse. Her stomach has been better since we put her on Miralax (she has constipation severly) and been eating fairly well, so needless to say....I am VERY confused. What were her blood results? The only positive number in my daughter's was the antigliadin IGG which was 33. Her ttg's were both negative. My Iga and Igg antigliadin came back both positive, however, my ob did not run the ttg's on me, so I am going to a GI next week for a consult to see if I should pursue. I am thinking I should. Please keep us posted on daughter's biopsy.

Laura

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My son has been a patient at Children's of Pgh for 3 years now, and I have nothing but wonderful things to say about everyone there (except the cafeteria people! LOL) If you have specific questions about anything, I'd be happy to answer them. My son was inpatient 7 weeks and has had 4 scopes, plus numerous other procedures there. Be really vocal about what you want and bring lots to occupy yourself -- all told this will take about 2 hours, maybe 3 (the procedure is quick, but the waiting/paperwork/recovery clogs stuff up)

joanna

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