Diagnosis

[racheltom]

I'm looking for advice on navigating the process of getting a diagnosis.  My 2-year-old daughter has been having symptoms for about a month now (consistent diahrea and distended belly) and the specialist we saw said he is predicting (not diagnosing) celiac.  He wants to do an endoscopy which they weren't able to schedule this procedure until mid-January.  The doctor does not want me to change her diet in the mean time, because he doesn't want the results of the endoscopy to be invalid.  Hope this makes sense.  I've so far ignored his advice and have been gluten-free with her for 5 days now.  No change in her symptoms yet of course, but we're hoping.  Do we cancel the endoscopy and just keep going with the diet?  Do we keep giving her gluten and do the procedure?  Any advice?  The blood test they did showed a low level of IGA which the doctor said indicates celiac.  Do we need to do the endoscopy in order to get an official diagnosis?  What if we just keep going with the diet to see if we get results?  Is there some advantage to having an official diagnosis, for example when she starts school in a few years? 

[kareng]

if it were me, I would keep her on a regular diet and get a new doctor.  Maybe the GI doctor understands Celiac testing better?  Low IGA means that the common blood tests, the IGA versions,  will not work.  

 

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[NoGlutenCooties]

Hopefully someone will respond who is more familiar with the unique issues with testing very young children - I don't remember the details, but I know testing can be trickier with the very young.  That said, if you go gluten-free before the tests, the tests are useless.  If it were me, I would go ahead with the endoscopy because you don't know for sure that it's Celiac and the endoscopy will also look for other possible causes.

[pricklypear1971]

It sounds like your doctor is on the right track wanting to do an endoscopy.

As far as bloodwork goes, if she has low levels of iga and is iga deficient that's an indicator of Celiac disease. Igg versions of the tests should be run. If she's "low positive" on iga celiac tests that's also an indicator or celiac disease. I'm not sure which one you meant from your wording.

Either way, she should stay on gluten until testing has been completed or you risk invalidating the tests.

There are several advantages to knowing if you're dealing with celiac or another issue, especially in a child. School is one. Actually addressing the correct issue is another. While testing can miss celiac disease, and a gluten-free trial is very informative....you have a willing doc ordering the test which may give you an answer. Most doctors will not dx celiac without an endoscopy.

[racheltom]

if it were me, I would keep her on a regular diet and get a new doctor.  Maybe the GI doctor understands Celiac testing better?  Low IGA means that the common blood tests, the IGA versions,  will not work.  

 

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Thanks for the reply.  This is a GI Specialist that gave us this suggestion of doing the endoscopy, but keeping gluten in the diet.  I just feel icky continuing to give her gluten in her diet when she may be getting sick from it.  Hope this makes sense. 

[kareng]

Thanks for the reply.  This is a GI Specialist that gave us this suggestion of doing the endoscopy, but keeping gluten in the diet.  I just feel icky continuing to give her gluten in her diet when she may be getting sick from it.  Hope this makes sense.

Without a diagnosis, schools, hospitals, dormitories, etc do not have to provide gluten-free foods or excuse the child from activities like baking in 6 th grade. When she is older, she may think " I don't have a diagnosis, I'll eat what I want."

I think it would be easier to keep her eating gluten for 3 more weeks and get a real diagnosis. You won't want to do it when she is 5 to get a diagnosis for school or let her gluten herself for a few years as a young adult.

[racheltom]

Without a diagnosis, schools, hospitals, dormitories, etc do not have to provide gluten-free foods or excuse the child from activities like baking in 6 th grade. When she is older, she may think " I don't have a diagnosis, I'll eat what I want."

I think it would be easier to keep her eating gluten for 3 more weeks and get a real diagnosis. You won't want to do it when she is 5 to get a diagnosis for school or let her gluten herself for a few years as a young adult.

 

You are right. Thank you. I'm just not looking forward to watching her go through an endoscopy at only 2.    

[greenbeanie]

Though it's difficult to keep feeding a child something that may make them sick, I also think it would be much better to do the endoscopy before making her gluten free. If she has celiac, an official diagnosis could also be important later so that any future doctors she sees will take it seriously. We spent the better part of three years trying to get a doctor to take my daughter's problems seriously, and we had to switch pediatricians several times before we found one who would even agree to order the blood tests. All the others kept insisting that we should just wait until she "outgrew" her constant tummy aches and food intolerances, while it kept getting worse and worse. Having an official diagnosis has made a world of difference for us. If you have a doctor now who is willing to order an endoscopy and get to the bottom of whatever is going on, that's wonderful!

[nvsmom]

The endoscopic biopsy requires gluten be eaten in the 2-4 weeks prior to the procedure if you want accurate results - I would keep her on it over the next three weeks too.  Use that time to start finding gluten-free products or recipes that she likes. Buy Chex instead of Cheerios... stuff like that. An adult needs the equivalent of 2 slices of bread per day for accurate testing so I am guessing that you will be able to start slowly switching her over to a gluten-light diet during that time.

 

5% of celiacs are low in IgA, which is quite a bit more than in the regular population than most doctors. That must be what your doctor was getting at.

 

What tests did she have done? In her case, the DGP IgG would probably be the best celiac test as it is good at detecting early celiac (such as in young children). The tTG IgG and EMA IgG  would also be good tests. The tTG IgA, EMA IgA, and DGP IgA would all be inaccurate (false negative) if she is low in IgA.

 

If the biopsy is negative, give the gluten-free diet a try for 6 months. Kids tend to improve a bit faster than adults but there are still many symptoms that take weeks to months to improve.  Plus, when she goes gluten-free, be aware that she may go through withdrawal in the first few weeks which can include a lot of fatigue, crankiness, and headaches - it can get worse before it gets better so hang in there.

 

Good luck with the biopsy!

[powerofpositivethinking]

I would definitely suggest getting the IGG versions of the tests performed for your daughter.  DGP IGG and TTG IGG.  Are you able to get a copy of the results from the doctor's office to make sure those two were performed since she is IGA deficient?

 

check out these two links regarding DGP testing:

 

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keep her on gluten until all testing is complete.  good luck!