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New Gi Doesn't Believe That My Dd Has Celiac!

ptkds

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ptkds Community Regular
ptkds
Posted

I haven't been on here in a while, but I just need to vent to those that understand!

My 4 yr old dd has a range of health issues. She has been having blood on her poop for a while so another dr wanted her to see a GI. Well, this is a new GI because the old one left :(. He told me that he doesn't really think my dd (or my others for that matter) actually have Celiac. I KNOW they have it. I don't care that they weren't scoped. They improved so much after going gluten-free. He then told me I should have them retested so that they will know whether staying gluten-free would be a requirement or a "lifestyle choice". Like I would choose this rotten lifestyle (sorry, not too happy about a gluten-free lifestyle!). He suggested that I put her back on gluten for 2 weeks and then do an endoscopy to "confirm" Celiac disease. He also wants to do a colonoscopy to try to see what the cause of the bleeding is. I don't have a problem with that (at least not too much!)

First of all, she has been gluten-free for 3 years. She will not have enough damage after only 2 wks to show up positive on an endoscopy. That is my 1st clue that this man is clueless. Second of all, she has a bleeding disorder. Why put her through some unneccesary testing that could cause her to bleed out? And third, he wasn't the dr that made the diagnosis. He didn't see my kids back then. Why does he think he has to change that diagnosis?

IMO, if she feels the need to "challenge" the diagnosis when she is an adult, then she can. But I will not knowingly give my 4 year old poison just to make the dr happy. She is a very happy child, and she is healthy!

I hate it when dr's act like this. It is just so frustrating! GGGGGGRRRRRRRRRRRR

Ok, I'm done venting for now!!

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ThatlldoGyp Rookie
ThatlldoGyp
Posted
I haven't been on here in a while, but I just need to vent to those that understand!

My 4 yr old dd has a range of health issues. She has been having blood on her poop for a while so another dr wanted her to see a GI. Well, this is a new GI because the old one left :(. He told me that he doesn't really think my dd (or my others for that matter) actually have Celiac. I KNOW they have it. I don't care that they weren't scoped. They improved so much after going gluten-free. He then told me I should have them retested so that they will know whether staying gluten-free would be a requirement or a "lifestyle choice". Like I would choose this rotten lifestyle (sorry, not too happy about a gluten-free lifestyle!). He suggested that I put her back on gluten for 2 weeks and then do an endoscopy to "confirm" Celiac disease. He also wants to do a colonoscopy to try to see what the cause of the bleeding is. I don't have a problem with that (at least not too much!)

First of all, she has been gluten-free for 3 years. She will not have enough damage after only 2 wks to show up positive on an endoscopy. That is my 1st clue that this man is clueless. Second of all, she has a bleeding disorder. Why put her through some unneccesary testing that could cause her to bleed out? And third, he wasn't the dr that made the diagnosis. He didn't see my kids back then. Why does he think he has to change that diagnosis?

IMO, if she feels the need to "challenge" the diagnosis when she is an adult, then she can. But I will not knowingly give my 4 year old poison just to make the dr happy. She is a very happy child, and she is healthy!

I hate it when dr's act like this. It is just so frustrating! GGGGGGRRRRRRRRRRRR

Ok, I'm done venting for now!!

seriously? With that family history? I would "just say NO" about that and let him know that any gluten challenge will be her choice when an adult. Don't argue about it, just state your decision and move on. If he has a problem with that, then I think a new GI is hopefully in your future!

Blessings!

TrillumHunter Enthusiast
TrillumHunter
Posted

Do I understand that he doesn't believe many people have celiac? If that's true, it might be best to move on if you can as he is woefully behind on current statistics and knowledge.

I wouldn't do that to a four-year-old. Think of how confusing it would be to be told she can eat what previously she was told was poison. Think of her young developing brain. Is it worth taking those risks to most likely end up with a negative biopsy? You are doing the right thing by refusing this for her. If she wants to challenge it later, you can help her then.

My kids were older when they went gluten-free. My dd was just under the cut-off and showing lots of signs. She was furious when we told her what we were going to do, but she did it. We saw amazing changes in her! She doesn't even look like the same kid because of how the puffiness in her face went down. And the behavior issues are just the run of the mill ones I expect now, not five-hour screaming fits. Two days ago she told me she didn't care what any test said, she would never eat gluten again.

Protect her health! You know what is best!

chiroptera Apprentice
chiroptera
Posted

I am sorry you have such an unsupportive doctor, although I have to say I am not surprised. You are SO doing the right thing (as moms/dad seem to do :) ) and try not to worry about what he said. I know, easier said than done and the doctor was insulting.

Btw, my kids were diagnosed also without an endoscopy and they said they would never ever ever eat gluten; they are nine.

take care! :)

  • 2 weeks later...
BlueTaelon Rookie
BlueTaelon
Posted

I ran into the same problem with our GI and he swore even a week would be enough to get + biopsy. I tried and dd reacted to badly, I ended up going behind his back and had DNA testing done and of course she came back + for the gene. He kind of backed off a bit but did state we can just test her when she's in her teens and hits the rebellion phase and starts sneaking gluten like most celiac teens seem to do. Our family is gluten-free period, I'm not going to change our diet to make some Dr happy when I see for myself how much our lives changed by the diet. I spent most of my life in severe pain and misery, I was begging for a hysterectomy at only 24 because I was in so much pain and I thought it could only be my girly bits causing it. The cramps would literally bring me to my knees when they hit they were so painful. All my health issues went away when I went gluten-free and since then we've found out celiac is very heavy in my family tree including a biopsy dx'd 30 years go!. 12 different people in 4 generations, thats a lot of misery going around!

Ahorsesoul Enthusiast
Ahorsesoul
Posted
Well, this is a new GI because the old one left :(. He told me that he doesn't really think my dd (or my others for that matter) actually have Celiac.

Ok he doesn't think they are celiac. You can tell him I dont think he knows much about celiac. lol

Wouldn't you just love to slap him up the side of the face with a full blown out of control case of celiac disease.

lovegrov Collaborator
lovegrov
Posted

Time for another GI if possible. For one thing, two weeks on back on gluten will tell him nothing.

richard

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EmilyR83 Rookie
EmilyR83
Posted

Oh gosh, I am going through almost the exact same thing. At first they were all supportive of us doing the gluten free diet and not doing the testing. They were so helpful. All the sudden, they decided he didnt have it and are calling me all the time telling me to put him on gluten. I finally gave and gave him gluten and he was in pain for days. I told them I wouldnt do it anymore and they are very upset saying that he probably doesnt have celiacs and it is a milk allergy(which he has been drinking milk with no problem-the only thing we did was cut out gluten and suddenly he was gaining weight and healthy and not crying constantly). We are currently looking for a new GI that actually listens to what we have to say. It is so frustrating! My husband keeps telling me, remember they have the degree, but you have the hands on experience. If you can clearly see that gluten causes the problem than cut it out!!!

Ahorsesoul Enthusiast
Ahorsesoul
Posted
remember they have the degree, but you have the hands on experience.

A very smart dh!

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