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waiting on biopsy for daughter...

smp
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smp Newbie
smp
Posted

Hi all,

My ten year old daughter had a celiac bloodwork panel done and her deaminated gliadin igg was highly positive (57).  All other markers were negative.  We have an appointment with a GI, but it isn't until May 26th.  Our pediatrician thinks they will recommend a biopsy, but isn't sure.  He suggested we put her on a gluten free diet "just to see how she responds" but the more I read the more I realize that to truly go gluten free is going to take some more work than "just try it", and she shouldn't be gluten free when getting the biopsy.

So, my questions are 1.  Does it make sense for us to go gluten free up until about 8 weeks before our appointment?  And then put her back on gluten so it is in her system before any follow up work? 2.  What do you all make of those bloodwork results?  It seems pretty likely celiac?  

If it is helpful to know... her symptoms are mainly mild-- gassy, headaches, brainfog, etc.  No major digestive pain.  

Thank you for any insights.  

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Ennis-TX Grand Master
Ennis-TX
Posted

If her symptoms are not bad right then it might be better to stay on gluten in the bare minimum (1-2 slices of bread a day) required until the biopsy. My reasoning is that many have MUCH worse symptoms reintroducing gluten after going gluten free for a bit. SO going back on gluten later could be really painful and hard later on to finish testing compared to staying on it just being minor for now.

I am unsure if she would understand the concept but for me I would say do a gluten bucket list, IE eat at restaurants you will not be able to go back to once on the diet, and get some of those treats from special bakeries out of the way. Once gluten free you can not eat out at as many places, most fast food joints are dangerous and everywhere non dedicated is Russian roulette.

Scott Adams Grand Master
Scott Adams
Posted

You may also want to share this with your doctor:

https://www.news-medical.net/news/20200207/New-guidelines-recommend-no-biopsy-approach-for-childhood-celiac-disease-diagnosis.aspx

smp Newbie
smp
Posted
  • Author
4 hours ago, Ennis_TX said:

If her symptoms are not bad right then it might be better to stay on gluten in the bare minimum (1-2 slices of bread a day) required until the biopsy. My reasoning is that many have MUCH worse symptoms reintroducing gluten after going gluten free for a bit. SO going back on gluten later could be really painful and hard later on to finish testing compared to staying on it just being minor for now.

I am unsure if she would understand the concept but for me I would say do a gluten bucket list, IE eat at restaurants you will not be able to go back to once on the diet, and get some of those treats from special bakeries out of the way. Once gluten free you can not eat out at as many places, most fast food joints are dangerous and everywhere non dedicated is Russian roulette.

Thank you for this perspective and the bucket list idea.  She totally gets it and has already started her list :)

3 hours ago, Scott Adams said:

You may also want to share this with your doctor:

https://www.news-medical.net/news/20200207/New-guidelines-recommend-no-biopsy-approach-for-childhood-celiac-disease-diagnosis.aspx

Thank you.  I wonder if the US is on board with this approach as well.

Fenrir Community Regular
Fenrir
Posted

I would definitely keep her on gluten until fully tested if it's manageable. I know I react to gluten way more harshly now that I've been gluten-free for six years than I did before I was diagnosed. 

Awol cast iron stomach Experienced
Awol cast iron stomach
Posted

I did reintroduce gluten to be tested. I agree with all the members above. Keep her on it until testing is complete. The goodbye tour also recommended is great advice.

When I reintroduced, I am disturbingly upset to report I couldn't complete my goodbye tour. My neuropathy and vestibular issues among all others prevented me from driving after day 4. Day four I had to pull over to vomit after just having/smelling gluten in my car. You can imagine the struggle to then eat it.

After day 4 the neuro stuff was in hyper drive. ( I know she's not driving age , but you get the idea ?) I then had to walk to my local bakery to gluten myself as I stumbled off curbs and had burning and numb limbs.

I got my last poppy seed bagel, and koltchy,  ( they were in walking distance) but I never got my Chicago deep dish pizza, chicago style hot dog, or french silk pie .  ☹️

My vote keep her on. 

I also had to go back on as I am a mother who had to find out if gluten was really an issue because my kids need to know.  It was possible as my cousin is Celiac. Are you and Dad being tested if she shows positive?

In the end they affirmed I should be strictly gluten-free and my shared household was not going to cut it. I don't go out to eat etc.

I am still hoping the years of my neuro damage improves in time. ?

She's young . I'm glad you are on this now. As I feel it's important to address this early than later. Good luck to you all on this journey.

 

 

smp Newbie
smp
Posted
  • Author
33 minutes ago, Awol cast iron stomach said:

I did reintroduce gluten to be tested. I agree with all the members above. Keep her on it until testing is complete. The goodbye tour also recommended is great advice.

When I reintroduced, I am disturbingly upset to report I couldn't complete my goodbye tour. My neuropathy and vestibular issues among all others prevented me from driving after day 4. Day four I had to pull over to vomit after just having/smelling gluten in my car. You can imagine the struggle to then eat it.

After day 4 the neuro stuff was in hyper drive. ( I know she's not driving age , but you get the idea ?) I then had to walk to my local bakery to gluten myself as I stumbled off curbs and had burning and numb limbs.

I got my last poppy seed bagel, and koltchy,  ( they were in walking distance) but I never got my Chicago deep dish pizza, chicago style hot dog, or french silk pie .  ☹️

My vote keep her on. 

I also had to go back on as I am a mother who had to find out if gluten was really an issue because my kids need to know.  It was possible as my cousin is Celiac. Are you and Dad being tested if she shows positive?

In the end they affirmed I should be strictly gluten-free and my shared household was not going to cut it. I don't go out to eat etc.

I am still hoping the years of my neuro damage improves in time. ?

She's young . I'm glad you are on this now. As I feel it's important to address this early than later. Good luck to you all on this journey.

 

 

Thank you for your advice. I’m so sorry you had to suffer so badly. I’m grateful we are able to figure this out early, too. 

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