This Month Is Out Gi Appointment

[vampella]

So after months of waiting , our GI appointment is this month. I'm nervous, I'm not sure why. I guess because I'm going to fighting with this doctor about what's happening and whats not happening.

I'm still not sure what the point is in going since I am not doing the biopsy.I don't need a Dr's note saying yes she has celiac disease. it's not important to me. I know she has it, her ped knows she has it even after neg ttg's. We have a lot of people with celiac disease in our family. I've told her ped I am not doing the biopsy and he say your going to have to tell him that. If I'm not doing the biopsy because of AMAZING dietary respons, what is the point of going at all? She's perfect & health now so, I don't get it.

[2Boys4Me]

Good luck. I'm sure the GI will have to agree there's no point to the biopsy since she's been on the diet for a while and clearly getting better.

[rez]

Not to pry, but just curious. I don't know your whole story. Why are you not doing the biopsy? I just read Dr. Peter Greene's book and he stresses the importance of a strong diagnosis for a child because some day they will be out on their own and start eating wheat again and may not have immediate symptoms. Even if the blood test was negative, isn't there a better chance that it would show up in a biopsy. Marsh 1 can take up to 6 mos to a year to heal and Marsh 4 up to two years. Again, I'm not disagreeing with your decision, I just would love to hear your rationale for my own benefit. My son's bloodwork was positive, but he's been on a gluten free diet for 4 months now. I don't know if he'll be able to handle a gluten challenge, but I feel like I need to know for sure because it affects his life so greatly in school and social situations. I know you said you have a family history, but we don't. I'm the lucky pioneer. I'm just curious why you're opting out of the biopsy, and not saying it's wrong. From what I've read on here, people say it's not that bad. Again, I'm just looking for help in my own situation as well. Good luck to you and your adorable little girl. :)

[vampella]

Not to pry, but just curious. I don't know your whole story. Why are you not doing the biopsy? I just read Dr. Peter Greene's book and he stresses the importance of a strong diagnosis for a child because some day they will be out on their own and start eating wheat again and may not have immediate symptoms. Even if the blood test was negative, isn't there a better chance that it would show up in a biopsy. Marsh 1 can take up to 6 mos to a year to heal and Marsh 4 up to two years. Again, I'm not disagreeing with your decision, I just would love to hear your rationale for my own benefit. My son's bloodwork was positive, but he's been on a gluten free diet for 4 months now. I don't know if he'll be able to handle a gluten challenge, but I feel like I need to know for sure because it affects his life so greatly in school and social situations. I know you said you have a family history, but we don't. I'm the lucky pioneer. I'm just curious why you're opting out of the biopsy, and not saying it's wrong. From what I've read on here, people say it's not that bad. Again, I'm just looking for help in my own situation as well. Good luck to you and your adorable little girl. :)

I understand, I know you aren't attacking me & telling me I am wrong!!

There are a lot of resons I am opting out of the biopsy.

1- I am not putting her back on gluten. She was SOOOO sick loosing pounds by the week, she lost over 5 lbs in a couple of months. Getting sicker and sicker by the minute. She was sleeping all day, pulling away from her peers hadn't grown since she was 18 months*she'll be 4 next month* she had D daily since she was a baby MANY times a day & so bad smelling. she's eat 1/2 of a med size pizza & still be hungry. she now eats normal sized meals

2- I could not torture/abuse her by making her ill again. it's one thing for it to happen by accident but not on purpose & I kick myself for accidents too.

3 I wasn't waiting from october to this month with her waisitng away in front of my eyes, so we dicided to go gluten-free. She mad a complete 360. she's healthy again and the DR is doing dances when she goes in because hse's doing so well. We are just seeing the GI this month, if she was still on gluten it could be another few months before she got a biopsy here.

She's gained 1 lb the first 2 weeks & 1 FULL inch the first month. that's the first height growth since she was 18 months and only 1 month after being gluten-free. she's gluten-free and has been for 3 months now and she's still gaining & growing. she's going to the bathroom regularly*NORMAL* poops

I am not putting her back on gluten to watch her get sicker & sicker again. I almost lost my mind the first time.

If she was still on gluten I would do the biopsy but I am NOT putting her back on it.

I completely understand some people wanting to know for sure but we know for sure as does her ped & that's all we need.

I don't even care if I get a paper saying she has celiac disease so I can claim her food expences because I would pay a million dollars a year to feed her to see her happy & healthy again.

If you have a positive blood test that's all the proof you need, no? biopsy just confirms and tells you

my dd is 4 next month and with the weight gain is 26.5 lbs & 36 inchs tall. We've been up graded by her ped from weekly visits to monthly!! yay!!

[vampella]

Sorry about the spelling mistakes & I also ment to say that she was full of gas all the time and so on. she's been glutened & get's very ill & gets the D from it, there is no doubt about her dx's.

[rez]

Wow! That's great! My son definitely has more wishy, washy questionable reactions. His symptoms aren't as obvious and forward. I'm so glad she's doing much better. We are lucky it hasn't really affected his growth, yet. I would have done the same thing in your case and I hope she continues to feel better! Good luck!

[vampella]

ya she's pretty text book lol. We just can't figure out why the ttg's are coming back neg but like the ped said, no test is 100 precent & from what I am told it's not very accurate in young children.

Thanks for the good wishes & I hope the same for you!!!!!

How old is your son? do you have to wait long to see a GI spec? we only have 2 ped GI's here in manitoba so it's a bit of a wait. I just hope he doesn't yell at me because I tell him no LOL

[rez]

Stick to your guns. A mother's gut is always right. We got the blood results back the second week of December and our appointment is Monday. I want them to just do the biopsy ASAP w/out a gluten challenge and then if they don't find ANYTHING, I'd be willing to TRY a challenge. I heard the bloodwork normalizes before the intestines so maybe there's still a chance. It's been a living nightmare going through all this. I think my doctor thought I was nuts, so I kept searching for the right doc. Finally, found a GP w/ Celiac himself. He ran the bloodwork on Thomas and Haley. Thomas' tTG was positive, only slightly, but he'd been off gluten for 4 months and our first doc ran the wrong test so we don't know how high it was 4 months ago. My daughter turned up hypothyroid. We also have an appt in Chicago w/ Guandalini on the 31st of this month. I can't wait to put all this behind us. My son is 8 and daughter 10. Thomas reacts to everything. Soy, gluten , and dairy. He's super sensitive and that's why all this has been so hard to figure out. I didn't know if he was getting accidentally glutened or if it wasn't gluten or........ well, you get the picture. The doctor wants us to take my daughter gluten free for 6 weeks and see if her thyroid numbers go back to normal. He really doesn't want to medicate a 10 year old for the rest of her life if it can be avoided. I was happy of that. He's very supportive and I think he's learning a lot from our story(this is our original,not celiac guy). It's just sooooo huge as you know socialy. My 10 year old daughter does not like the idea of going gluten free and the reality of all this is sinking in and it's hard. Nobody wants their kids to be different and there are so many people who don't understand and have never heard of Celiac. My goal is to raise awareness and education. Well, anyway, sorry for the long post, but I'm just praying all this is resolved sooner than later. I'm so happy your daughter got better so soon. My son still complains of stomach aches every day. I think I would be doing better if he was 100%. Of course it's not near what it was, but it's still not perfect. Good luck and keep in touch!

[kimber]

Hi

Just my .02 but considering your dd's response to a gluten-free diet....that would be all I needed

I wouldn't put her through testing or even see a GI....i don't think there is anything he can do

My ds had undiagnosed GI issues his whole life and it is just my experience, but we have been to 7-8 GI's....I know it isn't that they don't care but all they had to offer was an endo, upper Gi etc

They don't have the magic crytal ball I was hoping for....

Hope all that made sense...good luck!

Kim

[ryebaby0]

Maybe your GI won't disagree with you, given the remarkable change in her health. And even if s/he does, in the end it's the decision you make. Certainly her life isn't endangered by the lack of biopsy, and if her pediatrician is convinced by her dramatic change, that's all the "medical" proof anyone should really need. Don't be afraid to disagree with doctors -- they are only people, too, and they have their own biases and comfort zones that they use to make decisions. You just say "i know you would prefer you give her a gluten challenge and biopsy her, but we've decided against that for the foreseeable future. When she's older, if she choose, she can always do it then" and don't let them argue about it. I wouldn't do it either!

[Theheatons]

We had the biopsy done on our daughter a few weeks ago. She also has Type 1 diabetes, and had been complaining even before that diagnosis that her tummy hurt, pretty much off and on all the time. Mostly, it would be first thing in the morning, and then would stop complaining about it after eating, so we at first thought that she was just hungry and couldn't differentiate. Anyway, last February she had her annual diabetes blood work done, and the doctor had them test for celiac based on her tummy hurting all the time. Her antibodies were extremely high. He immediately wanted to send us to a GI for further evaluation, but we decided to hold off. The reasoning for us was that she didn't have "full blown" symptoms; no diarhea, no massive intestinal pain, she was gaining weight, etc. We finally broke down about a month ago, and made the appointment with the GI. She was wonderful. She took a look at the blood work, said yes, she should have the biopsy, and squeezed her into her schedule the next day. After that, our daughter has been pretty much gluten free, and has not complained of tummy ache since....

I guess my point with all this rambling is that you know your daughter best. As others have said, stick to your guns and do what you feel is best for you and your daughter. God Bless