Dr. Rant!

[mrsnj91]

*sigh* I am just going to bang my head against a wall as it seems that is the only thing that will listen to me!!

Here is our current standing. Just a reminder...we have been on a wheat free diet for two months. It turned out to be a gluten free as she was also having reactions to oats and we think Barley. She was having diarrhea and diaper rashes for 5 months with some eczema and hives. Since the diet she has been doing GREAT!!! I have been to the allergist, who is currently handeling Delaneys case, several times over this period. We have been debaiting if it is an allergy (which she doesn't show up on any test with) or Celiac. He says he wants to rule out a wheat allergy with a food challenge. We go yesterday for this challenge. I know it will be a waste of time cause I know she will not be having immed. reactions. They will be GI delayed reactions. We spend ALL day there. She eats some wheat items. Nothing. No hives. No eyes rolling back in the head. No breathing problems. Nothing. Now at the last visit he told me that if she should pass this wheat challenge she will be sent to a GI for further testing to look into Celiac/gluten intollerance. Yesterday he tells me after the day is done that he now wants her to be on a wheat diet (which BTW I have NOTHING to feed her here with wheat!!!) for a week and then do a stool sample. If the stool sample turns out that there is no blood then she is a pass. So I mention the GI and Celiac, etc and he tells me that it isn't a worry!!! I mention the oats and he tells me to go ahead and give them to her! When I mention the diarrhea he tells me it might have just been toddler diarrhea (what the heck is that!?) or a tummy bug. FOR 5 MONTHS????? And only when she started on grains!!!! Is this the same man I have been dealing with for two months??? Was it not him that sat in the room last month and told me he was concerned that this was in fact where we were likely to head??? I agreed to the wheat challenge to finally rule out an allergy. Done. Now I have to put her on wheat for a week? Then what? IF there is no blood in her stool she is announced perfect and mom is just a nut?? Come on! I was not the only one that had to change her diapers and hear her scream from the rashes. It wasn't a bug that lasted for 5 months! It started the day I gave her crackers and cookies. It went away when the grains went away. And now she is ok and we are going to do nothing?! I am beginning to think I am the one that is crazy! I am a bit mad and frustrated and feel like I am back to square one! Why is it that we have been talking an intollerance and now she is ok!? Is it honestly the end of the world to go to a GI and have her checked out there? I know he wasn't too happy about her having Celiac but isn't it better to know than to pretend it is all ok?? I just don't understand this change in direction! So now we are at yet another stand still (when I thought this was going to be finally a beginning to an end) and we wait now to see if she gets her GI reactions back. *sigh* I think I am going to take up drinking!

*breath in breath out* Ok....now I feel better!

[floridanative]

All I can say is your child obviously can NOT tolerate gluten - period! Why this doc has changed his tune is beyond me....it's almost like docs will do anything not to dx Celiac. What the h&%$ is going on? My sister's pcp said something like 'unless you want to change your whole life you may not want to get tested for Celiac' Excuse me! Of course it's better that someone gets cancer but at least they didn't have to give up gluten. Well if they survive cancer they probably will have to - duh.

Trust your instincts and remember you know what's best for your child. It's hard I know but you have to keep telling yourself - YOU know way more than 95% of docs in the US anyway, about Celiac disease. Best of luck to you.

[mrsnj91]

It just seems I keep coming up to walls. I tried to get my husbands and my GP to give us a gene test. Nope....he doesn't know the referral numbers and wants to send us to a GI. All I want is the gene test. You go behind your nurses desk, open the big book from my insurance co and look up Celiac and get the number. I don't work in an office there but I have done enough referrals to know how it works. Well that is just too hard to do. So I figured that the allergist, who up to yesterday was pretty sure this was where we were headed, would refer us and we would go that route. Nope. Another wall. Man he turned around so fast my head is still spinning! HTH! How do you sit and talk with me about Celiac/intollerance and now figure she is all just fine and Jim Dandy? Because she ate wheat in your office and didn't go into ana. shock? Come on! He knows the details. And here is little Missy walking round with her wheat cracker smiling like the world is just grand. *sigh* Maybe I am just going nuts. So far she hasnt' had any reactions. I keep waiting for it to come but nothing so far. Who knows...maybe it was an allergy and she outgrew it. Just seems rather fast and odd. Two months is not that long. I take her off and put her on a gluten-free diet and everything clears forever? Wow! Wish I had known that months ago! I am just sooooooooooo frustrated I wanna sit and cry.

I would rather keep her on this diet then to have everything come flying back and I am right back to where I started. She is young. She doesn't know the difference.

[taweavmo3]

I have been in your shoes, and I know how bad it is right now. But, don't keep second guessing your instinct. You KNOW she is doing better on a gluten-free diet, and that alone is more proof than any test can give you. I know it is really nice to have a diagnosis on paper, I have one daughter who has that. But I also have two boys who do not, and they are gluten free as well. I expressed my concerns to the ped, he agreed to testing. Those came back negative, but I put them on the diet anyway b/c I knew it worked. I don't feel the need to discuss this with the doc any further. It's a lifestyle choice, much like being vegetarian or eating stictly kosher food. I can see with my own eyes the subtle changes in my boys, and as much as I explain to the ped until I'm blue in the face, he will never understand b/c he doesn't live our lives. I have nothing against doctors at all, there are some excellent ones our there, but there comes a point when you just have to take control of your child's health, with or without their help.

A good doctor knows that a mother knows her children better than anyone. I have worked with very sick kids for years, and the #1 thing I have learned is to ALWAYS listen to a parent. Doesn't matter what a test says, if a parent says something is happening, it's 99% accurate.

Anyway, I don't mean to get preachy! And I'm sorry if I come across that way. I'm very passionate about this topic, b/c the neurological effects that celiac has had on my daughter are frightening. She is making progress, but it's slow and will take time. I never would have waited as long as I did for a diagnosis, if I knew ahead of time about the gluten free diet.

Good luck to you, keep coming here for support b/c we've all been there.

[Guest nini]

trust your mommy instinct. keep her gluten free, you saw the improvement, that is all you need to know. she may have healed enough in two months time so that she does not have an immediate reaction or any visible reaction at that, but trust your instinct that gluten is bad for her and do not second guess yourself because an idiot Dr. backpedaled on you.

My daughter is so much better off of gluten, her GI refused to dx her with Celiac, told me to feed her more whole wheat... WRONGO... NOT GONNA DO IT... She's now a very happy healthy soon to be six year old who is happily gluten free.