Jump to content

  • 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

Question About Endoscopy For My 8 Year Old Child

pryforma

Recommended Posts

pryforma Newbie
pryforma
Posted

My daughter (she is 8) tested positive for celiac ( blood test) at the time  she was 10 days gluten free, she did test negative one year ago for celiac but her health and growth went downhill from there and the last couple of months got worse so  i decided to cut the gluten and make a doctor appointment as soon as I could.  She started to feel better within a week 

 

as of 2 days ago she was 3 1/2 weeks off gluten ( she had one day couscous) most of her symptoms disappeared the bloat, hard tummy, the irritability, stomach pain , etc...

Well yesterday we got the results and her gi doctor said that to make really sure and to fully give her the diagnosis we should do an endoscopy he said it would be up to me... that for some parents the blood test is enough but to see the full picture it would be a good idea to do the endoscopy, I know people have different opinion on this...

 

so here is the thing

 

 I put her back on gluten she will be on gluten for 10 days before the biopsy (she was only off gluten for 3 1/2 weeks)

He said that as soon she starts to feel all the symptoms again  it's a good sign that we could see something in the biopsy ( I think that is what he meant )  regardless her appointment is in 10 days. 

My question is do you think that will be enough time to see something ? I've read so much already but some say it takes months to heal some say days .I don't want to have a false negative. But I don't want to put her on gluten more that I have to.What do you think?

Thank you for your opinion !

 

 

I called hr doctor's office for a copy in the meantime I asked for the results and she was telling me over the phone but of course my 2 year old started to scream she said something like

 

 igg 44.3

ig 98.7

iga 106

iga 2567 - (maybe these is not right I think that is what I heard) 
 
not even sure if it makes sense the results I should have asked for a copy ...

 

When  i will get the copy and post here :)

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

Celiac.com Sponsor (A8-M):


Christine0125 Contributor
Christine0125
Posted

Is the doctor willing to do a formal diagnosis of celiac without the endoscopy?  If so, then I probably wouldn't bother with it even though it was very easy both for myself and daughter especially since she's already gluten-free and doing so well with it.

 

My 9 year old was recently diagnosed (i was diagnosed about a year ago) and we did do the endoscopy with her but her labs were not nearly as conclusive as it the ones you posted above - I'm not an expert by any means but those look pretty significant.  Her doctor indicated that without the confirming endoscopy she wouldn't have a formal diagnosis which could prevent her from treatments as they become available in the future (her doc is at a hospital with a big celiac research center).  She also felt strongly that we should get a baseline so that if her growth and symptoms didn't improve gluten free we would have it as a comparison point.  Bottom line, we wanted her as a patient in the hospital's celiac center so we moved forward and had it done. 

mushroom Proficient
mushroom
Posted

Hello, and welcome.

 

The first thing you should understand is that there is a difference between beginning to heal, and being healed.  Obviously healing is the goal when one removes gluten from the diet, but that takes a while, longer in some than in others.  In most, however, healing begins right away, and in some a period of three weeks can be enough to change a positive result to a negative.  The blood tests look for antibodies to gliadin, and once the antibodies are no longer required to fight gluten the body stops making them so they can disappear from the blood quite quickly.  The damage in the gut also starts to heal but usually takes a lot longer than the disappearance of the antibodies.  If the damage is minimal it can also heal over quickly enough to not show on biopsy and that is why a gluten challenge is recommended after a period of gluten free.  There is a lot of disagreement as to how long a challenge needs to be.  Most doctors do not think it needs to be longer than a couple of weeks, although the consensus seems to focus on a longer period.  Still, it is up to you to work out with your doctor.  If you are going to make the effort it seems like you would want it to be valid.  Also, make sure that the GI takes at least 6 samples to be sure that he doesn't miss damaged areas.  Early celiac cannot be seen with the naked eye.

 

Regardless, it is possible to have negative blood work and biopsy and still be gluten intolerant, a diagnosis called non-celiac gluten intolerant.  Research into this condition is sketchy so far.

 

Good luck to your and your daughter.

pryforma Newbie
pryforma
Posted
  • Author

Is the doctor willing to do a formal diagnosis of celiac without the endoscopy?  If so, then I probably wouldn't bother with it even though it was very easy both for myself and daughter especially since she's already gluten-free and doing so well with it.

 

My 9 year old was recently diagnosed (i was diagnosed about a year ago) and we did do the endoscopy with her but her labs were not nearly as conclusive as it the ones you posted above - I'm not an expert by any means but those look pretty significant.  Her doctor indicated that without the confirming endoscopy she wouldn't have a formal diagnosis which could prevent her from treatments as they become available in the future (her doc is at a hospital with a big celiac research center).  She also felt strongly that we should get a baseline so that if her growth and symptoms didn't improve gluten free we would have it as a comparison point.  Bottom line, we wanted her as a patient in the hospital's celiac center so we moved forward and had it done. 

Thank you , for your reply , yea he is willing to leave as it is but we would never know everything for sure he too wants to give a formal diagnosis so that is why i want to get it done  . I just worry that 10 days on gluten is not enough although she is only been off for 3 /12 weeks . So far she has not complain about her stomach and she is been eating gluten since yesterday .

Thanks again 

Christine0125 Contributor
Christine0125
Posted

Since celiac is considered a disability, it will also allow her to be covered if she should ever need accomodations in schools and such.  I went ahead and put a 504 plan in place at school so that the communication is there with those that come in contact with her and to make sure accomodations are made so she doesn't have to do any art/science projects involving gluten containing materials and such.  I also wanted her to have unlimited access to the nurse/bathroom, etc as needed.  The school nurse also allowed me to take a stash of gluten free foods/snacks that are kept in the health room should there be an unexpected party or should she leave her lunch at home, or just have an unsettled stomach and need a quick bite... etc. 

 

The good news is my daughter has adjusted to gluten free without complaint.  Oh... and she's gained 3 pounds in the 3 months since going gluten free - YAY!

Archived

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

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


  • Member Statistics

    • Total Members
      131,827
    • Most Online (within 30 mins)
      7,748
    Rebecca Hurst
    Newest Member
    Rebecca Hurst
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • sleuth
      Nicotine Gum For Gluten Symptoms.. Am I Crazy?

      By sleuth · Posted

      Of course my son is on a 100% gluten free diet.  I wish his symptoms were not debilitating as there are right now.  He cannot work, even when a miniscule of cross contamination occurs.  It's not just GI distress, but intense fatigue, brain fog, depression, anxiety, insomnia, etc.  It's literally neurological inflammation.  Not to be taken lightly here.  We have sought out many other possible ways to cope during this window of time (8 months!!!!)  without success.   AN-PEP does not help and seems like studies on this are not well researched.  So, we are trying this out because research shows some promising results.  And, all participants showed no cravings afterwards, no signs of addiction.  The patch is different than the oral route such as smoking, vaping, gum, pouch, etc. 
    • Scott Adams
      Nicotine Gum For Gluten Symptoms.. Am I Crazy?

      By Scott Adams · Posted

      Have you tried AN-PEP enzymes, for example, GlutenX (who is a sponsor here)? A lot of research has shown that it can break down small amounts of gluten in the stomach, before it reaches the intestines. It might be a better approach than risking nicotine addiction, and the questionable research around this. I also hope that he’s trying to be 100% Gluten-Free.
    • Me,Sue
      Nausea

      By Me,Sue · Posted

      Hi all  I was diagnosed Coeliac a few years ago and follow a gluten free diet. The list of foods that I can eat without a problem grows shorter on a weekly basis. [I also have diabetes and asthma also].  BUT the reason I am posting this is because I seem to struggle with nausea quite a lot, which is really quite debilitating, and I was wondering if others suffer from nausea, even if following a gluten free diet. 
    • sleuth
      Nicotine Gum For Gluten Symptoms.. Am I Crazy?

      By sleuth · Posted

      @fatjacksonthecat I have been doing some digging about the topic of nicotine and celiac.  I came across many studies that showed that the nicotine patch helped many with long covid and chronic fatigue syndrome.  I have a son who was diagnosed with celiac and his symptoms are severe when he is glutened.  He shows a lot of neurological inflammation and suffered with fatigue, brain fog, depression, anxiety and insomnia. There have been studies revealing that nicotine smoke actually masking celiac symptoms.  I also read that microdosing with a nictoine patch prevents one from addiction.  We are currently trying this out and so far it has lifted the brain fog and helped with anxiety and mood.  One of the studies I have read showed that it's not so much the dose, but the length of time a person is on the patch that showed improvements.  Many showed significant improvement as early as week 3 and continued through week 12.  We are taking 3 day breaks in between to make sure we don't down regulate the nicotine receptors.   How have things been for you?  Are you still chewing nicotine gum?  Perhaps, try the patch?  And how long did it take to ease up on your symptoms when glutened?
    • cristiana
      New here

      By cristiana · Posted

      Hi @KathyR37 and a very warm welcome here.  I am so very sorry that you are going through all of this. I just wanted to check, have you ever been tested for any other gastrointestinal conditions? Cristiana  
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.