Questions

Laurie - posted on 02/10/2009 ( 5 moms have responded )

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I was just told at the pediatrician yesterday that my daughter, 1 year old, might be celiac. She is IgA and IgG deficient. Her celiac screen blood test came back negative for celiac but due to her Ig deficiencies, apparently this is normal and doesn't mean that she doesn't have celiac. She has had persistent diarrhea her whole life and GERD. We just started a gluten-free diet a couple of weeks ago and her diarrhea has disappeared and she seems happier and less gassy.

These are my questions:

Pre-packaged foods that have "natural flavour", "spices" and/or "smoke flavour" in them - can these ingredients contain gluten?

My daughter seems to be able to tolerate a very small amount of gluten in her diet (malt in her baby oat cereal doesn't seem to bother her), however our pediatrician informed us that this could still be causing damage to her intestines. If this were the case would she not continue to have diarrhea?

Is it possible to have a gluten sensitivity and it not be full-blown celiac disease?

Are there different tolernace levels within celiac disease?

Sorry for all of the questions but I am just starting to learn about celiac disease and eating gluten-free... there is a lot to learn...

Thanks!

5 Comments

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Nancy - posted on 02/26/2009

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Christine,



  Was your daughter diagnosed with Celiac or just an intolerance.  I was wondering b/c if Celiac, then Malt (Barley) is definitly a no-no.

Christine - posted on 02/26/2009

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Hi Laurie.  My name is Christine.  My daughter is 7 and she has been on a gluten-free diet for 1 year now.  It's vital in the beginning to be completely gluten free because it can take months for the intestine to heal properly.  So, in the early stages, staying away from malt and malt flavoring is a good idea.  You may not see external symptoms, but she is too young to tell you if she feels the slightest bit of discomfort as a result.  My daughter has gotten very good at recognizing what happens in her body when she does ingest something containing gluten, so we pick up on even the little things, like being more gassy than usual, or the mood swings that occur when she's had too much.  At this point, I feel it is ok for her to have some malt, but I try to avoid giving her too many foods that contain it.  If the vast majority of foods in her diet are completely gluten-free, then a little bit now and then doesn't seem to harm her.  But again, that's after several months of being very strict.  It's really not as hard as it seems in the beginning.  It just takes trial and error to find the right products for your family.  Reaching out to others for support is the best thing you can do.



Christine

Keeley - posted on 02/17/2009

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Hi, I am in the UK and we have the coeliac society which has a fab website with loads of links to suppliers etc. It also produces a book detailing all the GF foods available from supermarkets. I'm sure there must be one of these in Canada.

As for the symptoms, my son appears to tolerate a small amount of gluten too - again the malt in cereal, but Nancy is right, any amount is damaging and should be avoided. It is difficult tho! Especially as they get older and go to parties and friends houses more. While your daughter is so little, it will be easier to keep her off completely, and by the time she is older you will have the hang of it!

Good luck

Laurie - posted on 02/11/2009

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Thanks for your quick reply Nancy! My daughter has not had a small bowle biopsy done. We talked about it with the ped but because she is already on a gluten-free diet I don't want to reintroduce gluten just to do the test. The gluten-free diet seems to be working well for us so we'll stick with it until she is older. They figure that her IgA and IgG levels will come back up to normal by the time she is 4 or 5 and that unless anything changes in between times that we will test her system with gluten at that time.



I am in Canada. A lot of labels say "natural flavour" or "smoke flavour" and it isn't labelled what was used as the binding agent. If it doesn't specify (as most don't) then I try and stay away from it. She seems to be able to handle the small amounts that may or may not be in the foods, but, like you said, it isn't worth the risk of non-compliance. I was unaware that they are at a greater risk of developing diabetes, thyroid problems and colon cancer... Like I said I still have a bunch of research to do.



If any amount of gluten is potentially damaging her intestines would she not have symptoms from that - like diarrhea or gas and bloating?



What are your favourite gluten-free and/or celiac resources? Is there a list of websites somewhere? If not, would you be able to post one????



Thanks so much!!!!!!

Nancy - posted on 02/10/2009

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Hi Laurie,



     Sounds like you have a great doctor!  Did I see you were in Canada?  Here in the US, if there is wheat in something like a natural flavoring, it has to be labeled as such.  All pure spices are GF.We stick to products that are clearly labeled or that I have researched on the numerous Celiac listserves and message boards to be okay.  Most o fthe time, I can find someone who has already done the work of contacting a company.



   From what I understand, if someone has Celiac, any amount of gluten will cause damage.  Some people react to a little, some don't.  Often if gluten is ingested in small amount, it can have an accumalative effect.  Your doctor is right.  NO amount of gluten is okay.  Also, I have come to terms that my 9 year old is and will always inadvertantly getting gluten in the form of contamination.  For that reason, we are very strict about the "known" gluten items. The things that scare me are her risks for future autoimmune illnesses if she is not compliant.  If I am strict and can help prevent her from getting diabetes, thyroid problems and even colon cancer, then it is worth it.  She may develop them anyway, but at least I will know that I have done everything I can to lower her risk.



    That said, yes, many people have a gluten sensitivty.  Has your daughter had a small bowel biopsy?



Nancy



 



 

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