5 replies to this topic

[PLGW2012]

My 8-year-old just had blood tests and the doctor told us that based on her blood work he wants her to limit her gluten consumption to 1 piece of bread per day before her endoscopy Tuesday. I've read conflicting information. Most of what I read on celiac.com says that she should eat the same diet she always has and then go gluten free right after the biopsy, but the doctor is saying to cut it down based on her blood test results.

 

I'm even getting conflicting information from the GI office - one nurse says to plan to go completely gluten free as soon as we are home from the biopsy, but another says she tells people to wait until they get the biopsy results just in case it's not celiac.

 

What do you all think?

 

These were her results (I don't know if this matters, but I thought I'd put them up anyway):

 

Immunoglobulin A:          74      Normal (Range 28-180)

 

Endomysial Abs, S (IgA):    High  Positive Titer 1:160 (What does this one mean? I don't even know what a positive titer is )

 

IgA TTG:      Greater than 100  (Greater than 30: Strong Positive)

 

IgA Gliadin: 63.1 Positive (Greater than 30: Strong Positive)

 

IgG Gliadin: 53.7 Positive (Greater than 30: Strong Positive)

 

Also, how do you recommend jumping in? Should I get rid of all of the gluten in the house? Should I let her have one last pizza, etc., before the biopsy? It's hard to let her eat anything with gluten in it now because I feel like it's poisoning her.

 

I've posted a bunch here in the past few days, and I'm so thankful for everyone's help.

 

 

[nvsmom]

A titre (as I understand it) is essentially when they keep diluting the sample until the point when they can no longer detect the EMA. I had a positive titre at 1:40. It would start lower, and I'm not sure how low or what a negative is... I just know it's lower than 1;40. So it would go like 1:10, 1:20, 1:40, 1:80, 1:160, 1:320 etc. 1:160 is a pretty serious positive. We don't see EMA's in adults that high very often nevermind in a young child. 

 

EMA only shows up in response to serious damage being done to your gut (as I understand it). It appears after extensive damage has been done. That is why EMA tests in young children are often negative, they haven't had enough years alive to accumulate enough damage for the EMA to show up yet. EMA is as close to 100% specific to celiac as you can get. Combined with other tests , there is no doubt that she is a celiac.

 

Also, she  is positive in every single celiac blood test. Not many celiacs are. The only test that is within the normal range is the serum IgA, which is just to test if she makes enough IgA for the other tests to be accurate - it's not a celiac test.

http://www.curecelia...s3_Antibody.pdf

 

She is a celiac. Even if the doctors miss the damage during the biopsy (if the damage is patchy) she should be gluten-free as soon as the test is done. There would be no reason at all to wait. Eating gluten-free is not medically risky but continuing to eat gluten would be.

 

Cutting down her gluten before the biopsy on Tuesday should be no problem at this point. All of her intestinal damage will not heal in 4 days. I would consider letting her eat" gluten light" and perhaps let her eat those last gluten treats (Oreos, or gluten candy, or favourite muffins, or an icecream sandwich) before she has to give up gluten on Tuesday (after the biopsy). I would have those treats banished from the house before Tuesday though because it will be tough for her to watch other family members eat her favourite treats when she can't.

 

So I think you could let her have a few last treats (but going gluten-free for 4 days shouldn't make a difference to a biopsy), let her know it's the last time for gluten treats, clear the house of all gluten (check your soy sauce, worchestershire sauce,vitamins, get rid of sugar and baking ingredients that might be contaminated), and stock up on gluten-free food as well as a few gluten-free treats so she doesn't feel deprived when things change on tuesday..

 

Best of luck with the biopsy. I hope she is well soon.

 

p.s. Be patient with her in the first few weeks, some of us feel worse and get very cranky and tired when we go through withdrawl. Hopefully she'll skip that.  Best wishes.

[PLGW2012]

Wow, thanks so much nvsmom. Every time I read this forum I learn something new. I never thought to check vitamins! And thanks for explaining all of that...it's crazy that a kid with those blood tests could be mostly without symptoms!

 

That is very valuable input. I think we will do a "last oreos" and "last pizza" and that's it. I was getting really confused, but I think going gluten light until the biopsy is a good plan, and then gluten free right after the biopsy.

[masterjen]

What I was told by my gastroenterologist about eating before the test was to eat even more gluten than usual.  The reason given is that some endoscopy results can come back equivocal and if someone truly has celiac, even just a few days of pouring on the gluten can cause even more reaction from the damaged intestine to take place.  

 

An addition to what the above poster said: post-biopsy also make sure your daughter uses gluten-free toothpaste/mouth-rinse, if she uses lip-gloss make sure she uses one that is gluten-free, she is still young and may still inadvertently swallow shampoo when you wash her hair so you may want to use gluten-free shampoo on her hair. . . . Anything she might ingest even accidently should be gluten-free.  At this point you don't know just how sensitive she is to gluten, so my personal belief is to err on the side of caution.

[mommida]

You might want to have some popsicles on hand after the endoscope.  The throat can be a little sore/dry.  Maybe a quick stop for a 7/11 Slurpee, if you have someone to sit in the car  with your 8 year-old.  (Those are name brands that I have never found gluten in.  )  Those test results are high enough to change the diet right after the endoscopy.   You might want to avoid casein (protein chain of dairy) if the damage is severe.  (the tip of the villi that gets blunted/damage is mainly where the digestion of dairy happens)

 

Having a stash of gluten free favorite stuff to choose from on hand at all times makes the diet much better.  Even if it means having more junk food on hand than you like to offer as a parent.

 

Don't hesitate to ask for gluten free food substitutions/ advice here.  I have to admit I nearly panicked about not having Smores during campouts.    Then someone said,"Just use gluten free chocolate chip cookies."    Duh.  See the world does not end!  Now days 2 pieces of chocolate with marshmallow in between is the favorite choice of S'mores.

 

Don't be surprised if an accidental glutening causes a symptomatic reaction after the gluten free diet has started.  Keep a food journal to track down hidden gluten or determine if there are other food sensitivities.  I say journal because locations of where you have eaten may be part of a cross contamination puzzle.  Your home rice pudding recipe may contain egg, but Kozy Shack rice pudding is gluten free with out egg.  (should egg ever be another food intolerance)  Keep a big pocket to store ingredient labels.  (Had to track down other food "triggers" for added diagnoses of Eosinophilic Esophagitus which has a connection to Celiac~ so this is information learned through experience that I wish I had at the start.)

[PLGW2012]

You might want to have some popsicles on hand after the endoscope.  The throat can be a little sore/dry.  Maybe a quick stop for a 7/11 Slurpee, if you have someone to sit in the car  with your 8 year-old.  (Those are name brands that I have never found gluten in.  )  Those test results are high enough to change the diet right after the endoscopy.   You might want to avoid casein (protein chain of dairy) if the damage is severe.  (the tip of the villi that gets blunted/damage is mainly where the digestion of dairy happens)

 

Having a stash of gluten free favorite stuff to choose from on hand at all times makes the diet much better.  Even if it means having more junk food on hand than you like to offer as a parent.

 

Don't hesitate to ask for gluten free food substitutions/ advice here.  I have to admit I nearly panicked about not having Smores during campouts.    Then someone said,"Just use gluten free chocolate chip cookies."    Duh.  See the world does not end!  Now days 2 pieces of chocolate with marshmallow in between is the favorite choice of S'mores.

 

Don't be surprised if an accidental glutening causes a symptomatic reaction after the gluten free diet has started.  Keep a food journal to track down hidden gluten or determine if there are other food sensitivities.  I say journal because locations of where you have eaten may be part of a cross contamination puzzle.  Your home rice pudding recipe may contain egg, but Kozy Shack rice pudding is gluten free with out egg.  (should egg ever be another food intolerance)  Keep a big pocket to store ingredient labels.  (Had to track down other food "triggers" for added diagnoses of Eosinophilic Esophagitus which has a connection to Celiac~ so this is information learned through experience that I wish I had at the start.)

 

Thanks for the suggestions, I feel more confident now about starting to go gluten free immediately after the procedure.

 

I'm glad you mentioned Eosinophilic Esophagitus because they are doing some kind of procedure that I am still reading about at the same time of the endoscopy Tuesday to check for that. The doctor keeps referring to it as EoE and says that it's really important to check for it, but he hasn't gotten back to me about why it's important. So I'm glad to hear that it's a legitimate thing to be concerned about and they aren't doing unecessary testing.

 

I also didn't know that the endoscopy could tell us how serious the damage is. I thought it was more just to confirm the celiac diagnosis. All of you on this forum are much more informative than the GI doctor, who takes days to respond to general questions!