Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Latest Adventure With Ped Gi
0

8 posts in this topic

According to celiac blood test (not complete panel) 4 years ago and negative endoscopy biopsy results last September, my daughter does not have celiac disease. After being in pain for years and having "unexplained" failure to thrive, growth hormone deficiency, pancreatic insufficiency, chronic gastritis, mouth ulcers, constipation, etc., we put her on a gluten free diet in March after Enterolab results indicated gluten sensitivity. The change in how she feels, looks, etc. has been phenomenal.

I don't want to make this post too long but we switched back to our original Ped GI doc and he was not the one who scoped her. He has suggested that we put her back on gluten and rescope to see if she does indeed have celiac disease.

She has been through so many tests (cystic fibrosis, h.pylori, growth hormone tests, gi endoscopy, MRIs of head and stomach, etc.) that I don't want to put her through a gluten challenge and another scope. A couple of times that she has gotten glutened over the past six months, the pain has been horrible for her (crying for hours). I feel like she is starting to "heal" and adjusting to a gluten free way of life so why put her though this process again. I said no to a rescope. Am I wrong?

By the way, since going gluten free her pancreatic insufficiency test has come back normal, constipation is no longer an issue, and no mouth ulcers. Her stomach aches have gone from 5-6 per week to an occasional stomach ache. I feel like we have our answer but it seems like since I figured it out when the doctors could not, they seem less inclined to believe it. Why can't her positive response to gluten free diet be enough?

0

Share this post


Link to post
Share on other sites


Ads by Google:

If you were to sentence someone in a court of law to eat gluten when they do not tolerate it, I believe that would be classified as cruel and unusual punishment. And yet that is what your doctor is proposing for your little girl. How many chances do doctors think we should give them to "get it right".

You seem to have made the diagnosis to your satisfaction and I am sure to your daughter's satisfaction. If I were you I would tell the doctor that it is obvious that she is gluten intolerant and if they couldn't find celiac disease before, she either does not have it or they did not do enough blood tests or take enough samples during the scope (how many did they take?) They are not going to get a "do over" at your daughter's expense. I would also ask him to give you a letter diagnosing her as gluten intolerant that you can use when necessary during her schooling.

This is all, of course, dependent on your not needing the diagnosis of celiac for some reason.... I am just stating how I feel about it. And you did not mention how long a challenge he was proposing. But it still sounds barbaric with the symptoms she has had.

1

Share this post


Link to post
Share on other sites

No, you are not "wrong."

Because the doctor knows you have insurance that will reimburse him for screwing up her diagnosis again, because now the chance of it being negative is even higher, you did the right thing.

What a sadistic son of a .......... <_<:angry:

This is the equivalent of going to a new doctor 7 months after recovering from an infectious disease, and the doctor saying

"why don't we re-infect you with the bacteria, and then I can run a culture and treat you with a better (more $expensive$) antibiotic."

1

Share this post


Link to post
Share on other sites

I agree and think you were absolutely correct to refuse the repeat endoscopy. Aside from being cruel - there is no guarantee that a challenge would produce positive biopsy results - while it would certainly harm your daughter's health.

Should you find you need a diagnosis for school or other reason in the future - perhaps you can try a GI that specializes in Celiac Disease - or even her primary doctor may be willing to provide proof of diagnosis based on her history. I can tell you that we have not had to provide any documentation for my kids that tested negative, but had severe health problems resolve once gluten-free.

Perhaps the doctor would like to consume a just a little ground glass each day so we can check if there is any damage after a few months ;)

0

Share this post


Link to post
Share on other sites

Thanks Mushroom. That is exactly how I feel. I just wanted confirmation that I was not being crazy for refusing to put my daughter through that. I cannot stand the thought of going back to how she used to feel.

My main goal is to have documentation when needed for school. With or without the scope, I believe the GI doctor will work with us on that.

0

Share this post


Link to post
Share on other sites




Thanks Takala and Gottaski. I have to admit, I was surprised that he even suggested it after my going over all the issues that have resolved after going gluten free.

0

Share this post


Link to post
Share on other sites

No, you are not "wrong."

Because the doctor knows you have insurance that will reimburse him for screwing up her diagnosis again, because now the chance of it being negative is even higher, you did the right thing.

What a sadistic son of a .......... <_<:angry:

This is the equivalent of going to a new doctor 7 months after recovering from an infectious disease, and the doctor saying

"why don't we re-infect you with the bacteria, and then I can run a culture and treat you with a better (more $expensive$) antibiotic."

LOL, we are on the same page. The phrase that came to my mind was "No )(%$^**( way!

0

Share this post


Link to post
Share on other sites

I'm with you. I made a very similar decision to not do a scope with a gi who had proven herself ignorant of celiac. When she called me and said, "I've never seen a child get a negative blood test and then get a positive biopsy but I GUESS it does happen", I just knew I didn't want this person scoping my child and profiting from it. I'm sure she has sent tons of celiacs away from her practice because she doesn't believe they can have it and/or doesn't know how to recognize it. Honestly I don't want her to have my insurance company's money or mine!

So I decided to switch to a specialist in Celiac. I'll go see her but it will be another month. I couldn't get in for an INITIAL visit any sooner than a month, which would mean another month for a scope. I just tested positive for celiac. My son has it. I wouldn't have him keep eating paint to see if the paint has lead in it. He'll go gluten-free for six months and we'll observe him. If a doctor doesn't diagnose based on that, I'll keep looking for one who does!

OP, I'm feeling a little uncertain too because I like to follow the rules. But seeing your post about your daughter's progress (my son is very similar) gave me hope. And you reminded me what really matters, the health of our kids. Thanks for that!

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,145
    • Total Posts
      919,571
  • Topics

  • Posts

    • I found when I went gluten free I started eating more dairy and that gave me worse stomach aches and bloating than the gluten did. So now I have to avoid gluten and dairy.  Maybe you have a similar problem with something you are eating.  I hope you feel better soon.  
    • Hi! I received my "official" celiac diagnosis last week. I had an endoscopy last month that was originally looking for ulcers and h. pylori, but they did some biopsies of my duodenum since they were in the neighborhood and the biopsy came back "consistent with Celiac's disease" and later. They urged me to get my blood checked and follow up with my primary doctor. My blood work came back negative, but my doctor was confident it's Celiac so told me to stay away from gluten. I've been completely gluten free (or to the best of my knowledge) for 2 weeks now, and my results are mixed. At first, I felt great! My stomach was no longer CRAZY bloated once I stopped eating pasta and bread, my acne started healing, and the red rash on the back of my arms started to fade. That was the first few days. Lately, though, my acne is once again flaring up and I've been SO EXHAUSTED. I feel so tired all the time. Even now I have fatigue in my head, limbs, and I could hardly walk or move my body earlier today. I'm overweight and I like to go to the gym, but what used to be an easy workout for me is kicking my ass! I used to go to the gym and tear it up: HIIT on the treadmill followed by 40 minutes of heavy weight lifting. Now I can hardly finish 3 reps in my first set without feeling like a nap. I can't run anymore because my body feels clumsy and heavy. Also, I'm still bloated. I don't suffer from painful, acute bloating, but I struggle to pass gas and I look like I have pregnant belly. I think I'm also retaining water all over my body, and I'm not sure if that's normal? For whatever reason, I have this belief that water is mainly retained in the core and not arms, legs, and face. Anyway, I'd love to hear what you have to say/what you've experienced. Is this typical to first going gluten free?
    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

    There are no registered users currently online

  • Member Statistics

    • Total Members
      61,177
    • Most Online
      1,763

    Newest Member
    lolobaggins
    Joined