Need Help Please

[HSRmom]

Hello all, I am new to this group.  I have a 4 year old that we believe has celiacs or at least a gluten sensitivity.  In October she had an endoscopy and blood work.  The blood work was positive, but ther biopsy was negative.  They wanted me to not change her diet and to retest her this month (January).  I did some reading and believe that she may have celiacs and at the very least gluten sensitivity.  I decided in December that prior to retesting I would try a gluten free diet rather than put her through the trauma of a blood draw.  It has only been about 2 1/2 weeks gluten free, but I am not sure if there any changes.  Her pediatrician said that she thought it was ok to try the gluten free diet that she probably has some sort of sensitivity.  Where I need help is, is it safe to assume that she has celiacs or sensitivity based on the one test?  Should I continue with the gluten free diet (I assume it could take some time to see results)?  Her symptoms were/are:  reflux and tummy aches (taking prevacid); exercise induced asthmas (which she uses 2 inhalers); chronic constipation (which she is on miralax), these are the most noticable.  She is an extremely picky eater eating primarily carbs/grains, a few fruits and only tuna fish as a protein (sometimes). 

 

Also, my husband and I went on it with her to make the transition easier.  He has noticed that is IBS is better and so is the arthritis in his left hand.  Do you agree it is ok for us to be on it as well?

 

Thanks to all for your assistance.

[NoGlutenCooties]

Hi HSRMom and Welcome to the Forum!

 

In my opinion, if her bloodwork was positive for Celiac then she has Celiac.  Many doctors will not confirm the diagnosis without a positive biopsy but from what I understand that can be even trickier in children than it is in adults because they haven't had the disease long enough for there to be enough damage to show up on the tests.  You're also relying on the doctor to happen to biopsy the right spot because the damage is usually spotty.  That said, if you post the bloodtest results with the ranges that the lab uses someone on here may be able to help you confirm what they mean.

 

You're right in that in can take some time to see results from the gluten-free diet, and to see symptom relief you need to make sure she is 100% gluten-free - no cross-contamination, etc.  I did a quick search for Prevacid and Miralax and they are both gluten-free.  Keep in mind that many Celiacs have problems with other grains, especially corn, and sometimes dairy too - especially at first.

 

FWIW... with IBS and arthiritis, your husband may have Celiac too - was he tested prior to going gluten-free?

[notme]

celiac is genetic, so if your child has celiac, she had to get it from one of her parents.  if your husband has celiac related problems that are clearing up by eating gluten free, that makes perfect sense. 

 

false negatives are common on the blood test.  false positives are not - your kid has celiac.  you will probably want to read the newbie 101 thread -- it is in the 'coping with' section of this forum -- to get tips on how to keep your daughter gluten free.  there is also a section on here for parents of babies/kids with celiac where other parents share advice   welcome to the board and good luck!

[brileighlevi]

Yep if her blood work was positive she has celiac. I have the other problem with my daughter... "possibly" positive biopsy, negative on the tests they ran so far. We're waiting on more tests before going gluten-free. I hope she continues to heal and definitely check for cross contamination.

[nvsmom]

Agreed. There are a few other people around here with positive blood work but negative biopsies. It's not as uncommon as you would think.

 

As for going gluten-free, anyone can do it. There is nothing nutritionally needed in gluten. Nothing. Everyone in the world could stop eating wheat, barley and rye and not a single one would be ill because of it... assuming there is are healthy replacement foods that is. Really, the only thing healthy about wheat flours is that they are fortified with added vitamins; taking a multivitamin will give you the same benefits. The only bad thing about the gluten-free diet is having to learn new ways to bake, and the hassle of finding safe places to eat out. That's it.  

 

Good luck with the diet. i hope your dd and dh continue to feel better.... You might want dh and yourself, plus any other kids you have, get tested for celiac disease before going gluten-free any longer. Knowing sometimes makes it easier not to cheat.

 

Best wishes.

[africanqueen99]

I'm going to be odd man out here.  We're talking about a kid that will live a long healthy life, but on a crazy, restricted diet.  So I'd run another set of blood work before taking her off gluten.  Yes, it SUCKS doing blood again for kids.  Yes, I did it for my two positive kids.  Yes, I *needed* to know it was positive and not a weird mix-up at the lab.

[Cara in Boston]

A positive blood test is a positive blood test.  Considering she also has several symptoms (my son had zero symptoms) it is pretty clear.

 

That they didn't find anything on the biopsy just means the didn't FIND anything.  Not that it was not there.  

 

I had a positive blood test and negative biopsy.  All my symptoms cleared up by being gluten free.

 

Both you and your husband should be tested . . . although being gluten free already might make them more inaccurate.  

 

IBS isn't really a disease . . . it is just a term used to describe a collection of symptoms.  The symptoms very well could be caused by Gluten Intolerance or Celiac.