Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

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

ptkds

Recommended Posts

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!!

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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!

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      125,882
    • Most Online (within 30 mins)
      7,748
    tina.walstad
    Newest Member
    tina.walstad
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • gregoryC
      Celebrity Cruise for Gluten Free

      By gregoryC · Posted

      Just finished my second celebrity cruise. My first was on one of their oldest ships, it was awesome! Now we have sailed on the edge class. Wow! Not only do they have so many gluten-free options but the selection is mind blowing! Any given day you will have between 5 to 7 different gluten-free cakes to try. Yes that is right, one day at the coffee shop I had to choose between 5 gluten-free cakes not including the several puddings on display. So they gave me a small piece of each. 2 were great, 2 were just good, and 1 I did not enjoy. But never have I had the tough decision of which cake to eat?  These selections are from their normal options available for all guest. In the main dining room they always surprised me with some awesome desserts.  In my opinion the best pizza was on the Millennium class and best buffet on the Edge class. Although these two ship vary in size they are both consistent and serving high quality food from the main dinning room. The edge class gives you 4 “main” dining rooms (all included). I was unsure how this would work with my gluten-free diet? It worked great! I was able to order or see the next night’s menu for each of the four dinning venues finding that very little to no modifications needed to be made due to their extensive gluten free options.  The Millennium and Edge class ships provide the best gluten-free options from any of the cruise lines I have sailed with. You will find a larger selection and options on the edge class ships, however you will not be disappointed with the smaller Millennium class. Which is still my favorite cruise ship to date.   
    • trents
      9 year old- questionable results

      By trents · Posted

      Welcome to the forum, @ABP! We can't comment on the test numbers you give as you didn't include the range for negative. Different labs use different units and different ranges. There are no industry standards for this so we need more information. If your daughter doesn't have celiac disease she still could have NCGS (Non Celiac Gluten Sensitivity) which some experts believe can be a precursor to celiac disease and is 10x more common than celiac disease. However, there is no test for it yet but it does share many of the same symptoms with celiac disease. Both require complete abstinence from gluten.  It is seldom the case during testing where all tests are positive, even for those who do have celiac disease. This is no different than when diagnosing other medical conditions and that is why it is typical to run numbers of tests that come at things from different angles when seeking to arrive at a diagnosis. It seems like you are at the point, since you have had both blood antibody testing and endoscopy/biopsy done, that you need to trial the gluten free diet. If her symptoms improve then you know all you need to know, whatever you label you want to give it. But given that apparently at least one celiac antibody blood test is positive and she has classic celiac symptoms such as slow growth, constipation and bloating, my money would be on celiac disease as opposed to NCGS.
    • ABP
      9 year old- questionable results

      By ABP · Posted

      My nine-year-old daughter has suffered with severe constipation and bloating for years as well as frequent mouth sores, and keratosis Polaris on her arms. She also has recently decreased on her growth curve her % going down gradually.  After seeing a gastroenterologist, her IgG GLIADIN (DEAMIDATED) AB (IGG) was 22.4 while her IGA was normal. Her TISSUE TRANSGLUTAMINASE AB, IGA was 11.9.  Most recently her genetic test for celiac was positive.  After an endoscopy her tissue showed inflammation of the tissue as well as , increased intraepithelial lymphocytes (IELs) but there was no blunting of the change in the villi.    It seems that every result that we get one out of two things positive rather than all leading to an inconclusive diagnosis. While we do have another appointment with the doctor to go over the results. I'm curious based on this information what others think.    I would hate to have her eliminate gluten if not necessary- but also don't want to not remove if it is necessary.    Signed Confused and Concerned Mama
    • Scott Adams
      Gluten Free ADHD medications

      By Scott Adams · Posted

      I guess using "GF" instead of "PL" would have been too easy! 😉
    • trents
      Help with blood test result

      By trents · Posted

      I was wrong, however, about there being no particular health concerns associated with high total IGA: https://www.inspire.com/resources/chronic-disease/understanding-high-iga-levels-causes-impacts/ So maybe the physician's "borderline" remark is relevant to that.
×
×
  • Create New...