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

[ryebaby0]

Hi, Joanna, do you live in or near Pittsburgh?

Actually, we are about 3 hours away --- closer to 4 in the winter, or when PennDOT is busy tearing up Rt. 22! We're quite a bit east of the 'burgh

j.

[lcmcafee2]

She has the MRI first and I believe they are doing a contrast so that will be another needle. They have said the sedation willl be the kind that I can be there with her almost the whole time. Then the next week is the scope and the sleep medication. I believe they plan to put the IV in to put her to sleep with. We have to be there a half hour earlier for them to use some kind of cream on her arm to make it easier or less painful.

Last week she got a flu shot. The nurse ask her if she was going to cry ... Julie just looked her in the eye and said "I don't cry, but I fight!" I counted the folks in the room, totaled four and hoped that was enough! She actually did very well. I held her and she got the flu shot without any more comments or actions ..then marched herself out of the room.

My family mostly think I just want someone else diagnosed "with me" so I am not the only one with Celiac in the family. It angers me for that. Julie is our granddaughter we have had custody of since birth. I KNOW her. I quit my job to stay home with her and her brother (10 months older than her) This child has been on prevacid for a year now with some improvement. At least she isn't throwing up once or twice a week. It has improved to 3-5 times a month. Back in June of 2005 this is a quote of what I got when I asked for her results of the tests.

Labs: Amino Acid, Serum - Normal; IGF - I 72; Normal bone age; Cortisol 11.5; T4, Total 9.3: TSH 1.130' IGFBP - 3 2.1

She just had another set of labs done and I have yet to hear about them. It is almost like pulling teeth to get them to send me a copy of the results.

She has insomnia and it wasn't until she turned 5 (last month) that she actually stayed in her bed and slept the night. Now at least half the time she sleeps through the night. I feel she needs the diagnosis confirmed or ruled out in case we need to enforce what she eats for when she goes to her mothers. If she has to be gluten free her mom would not abide by that unless we had documentation.

Sorry for running on so .... I am just getting stressed about this for her.

Laura

[lcmcafee2]

Well Julie had the MRI yesterday and the nurses were great. They put the cream on the back of her hands, so when it came time for the IV she didn't even react. (It took five of us to get the hand bone x-ray done last year... she went crazy) After the first two medications they put in she drifted out ..... She was a real trooper! Once we got home she wanted chicken noodle soup so I fixed her some and she has been throwing up when she drinks/eats ever since. This morning I am going to call the doctor for something for the vomiting, since I am not sure this is from the medication or the gluten from the noodles. Monday she will have the biopsies. I sure hope we start to get some answers. Her weight is still at 29 pounds and we have been pushing a high calorie diet for 2 months now. Anyone know how long it takes the biopsies to come back? In the hospital, right after my scope they told me to go gluten free, do they do that for the kids?

Laura

[LauraW]

Well Julie had the MRI yesterday and the nurses were great. They put the cream on the back of her hands, so when it came time for the IV she didn't even react. (It took five of us to get the hand bone x-ray done last year... she went crazy) After the first two medications they put in she drifted out ..... She was a real trooper! Once we got home she wanted chicken noodle soup so I fixed her some and she has been throwing up when she drinks/eats ever since. This morning I am going to call the doctor for something for the vomiting, since I am not sure this is from the medication or the gluten from the noodles. Monday she will have the biopsies. I sure hope we start to get some answers. Her weight is still at 29 pounds and we have been pushing a high calorie diet for 2 months now. Anyone know how long it takes the biopsies to come back? In the hospital, right after my scope they told me to go gluten free, do they do that for the kids?

Laura

Hi Laura,

I am so glad it is over for you guys. I'm sure it feels like a weight has been lifited off your shoulders. My dd actually did great from the anesthia and didn't get sick at all, so I would definitely call the dr and get some phenergran or something that will help her. I would think it was probably from the anesthia, not the noodles, but definitely call the dr. My dd's biopsy was on a THursday and he called with the results the next Wednesday. So 3-4 bus days I would think. My doctor did not say go gluten free until results came back, however, it sounds like your dr thinks there is a good chance Julie does, so I would probably go ahead and start now. I just wanted also to comment on your last post as well. It sounds like you are doing a wonderful job raising your grandaughter and that you are a hero in my eyes. She is very lucky to have you (I'm sure she knows that) and I hope it all works out with her mom following the rules with her diet. It won't take long to figure outif she is not. She will either tell you or get sick. Please keep us posted and I am glad it is all over for you.

Laura

[lcmcafee2]

Laura,

Actually it is only half over. The Endoscope is Monday. I am hoping it goes as easy as the MRI! I will post and let you know when we get the results from that.

Thanks for the words of encoragement, means a lot, and I appreciate hearing them.

I hope you get answers for you and your daughter. Didn't I read that you were thinking of checking into having the biopsies? If you go the the GI and have the biopsies and they come back as Celiac that would definitely give you direction for your daughter. The waiting... testing.... waiting... explaining.... yadda.. yadda.. yadda.. makes it so frustrating. I have been gluten free for a few years now and for me just putting a name to the symptoms was a relief.

Thanks again,

Laura

[Fiddle-Faddle]

Just a heads-up here--I read on some of the other threads that some of the members of this board have been denied life insurance and HEALTH CARE COVERAGE after being diagnosed as celiac.

We all know how deeply flawed our health care system is. Unless you really think you will learn about a diagnosis other than celiac from an endoscopy, or if you don't believe in the diagnostic ability of a positive response to a gluten-free diet, you might want to wait on an endoscopy, especially if there is any chance you might be moving or switching insurance companies.

Either way, good luck!

[LauraW]

Laura,

Actually it is only half over. The Endoscope is Monday. I am hoping it goes as easy as the MRI! I will post and let you know when we get the results from that.

Thanks for the words of encoragement, means a lot, and I appreciate hearing them.

I hope you get answers for you and your daughter. Didn't I read that you were thinking of checking into having the biopsies? If you go the the GI and have the biopsies and they come back as Celiac that would definitely give you direction for your daughter. The waiting... testing.... waiting... explaining.... yadda.. yadda.. yadda.. makes it so frustrating. I have been gluten free for a few years now and for me just putting a name to the symptoms was a relief.

Thanks again,

Laura

I'm a ding dong! I obviously can't read, b/c you put in your post MRI and I guess I was thinking biopsy the whole time. Please keep us posted next week with the biopsy. Yes, I saw a GI yesterday and they are going to run my ttg's, since the only bloodwork they did on my was the antigliadin IGG and IGA (both were positive). He does think I should be scoped just to make sure, even if it is not celiac, that something else isn't giong on. Most definitely, yes, I will have a clearer direction with my daughter, if I do have celiac. In one sense, you don't wan't this life long disease, in another, it gives you answers you have been searching for for years. Keep us posted Laura!!!

Laura

[Guest nini]

Just a heads-up here--I read on some of the other threads that some of the members of this board have been denied life insurance and HEALTH CARE COVERAGE after being diagnosed as celiac.

We all know how deeply flawed our health care system is. Unless you really think you will learn about a diagnosis other than celiac from an endoscopy, or if you don't believe in the diagnostic ability of a positive response to a gluten-free diet, you might want to wait on an endoscopy, especially if there is any chance you might be moving or switching insurance companies.

Either way, good luck!

raising hand, me... I was denied health insurance because of the Celiac dx on my permanent health record and I didn't even have the biopsy.

[zachsmom]

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

Laura your mom will get over it. You have to do what you think is best. I support you.