Day 10 of 31: Gluten Intolerant

I have mentioned before that Madi is gluten-intolerant.  I always said I was going to post more about it......but never did.  So, here goes.

People with Down syndrome have an increased risk of having celiac disease.  Depending on what statistic you read, approximately 10% of people with Down syndrome have celiac disease.  For many, the only symptom that exhibits itself is bloating.  For others, it can be diarrhea, constipation, intestinal discomfort or failure to thrive.

Ever since we had started to truly introduce a variety of solid foods, with the exception of purees, she had this HORRIBLE smell and the soft/diarrhea diapers.

Madi's journey into finding out about her gluten-intolerance started with the triple scope procedure we had done with Aerodigestive Clinic this past March.  During the scope procedure, they did a biopsy on her intestines and stomach to test for Celiac Disease.  The results came back as negative so they suggested we go to a food allergist to see if an allergy was causing the symptoms she was having.

We went to the food allergist.......results were negative.  They said the tests are not 100% accurate at that young of an age but as of now, they were negative.  They suggested we go back to the Aerodigestive team to talk to them about possible lactose intolerance.

So, where did that leave us?

You know how sometimes momma's just seem to know something is wrong, even though the doctors/test results say otherwise........well, I just had a hunch that it had something to do with wheat, gluten or something along those lines.

After talking to a couple of other Ds momma's that have already been there and done that.......I learned that the Celiac Disease biopsies are not really that accurate.  They can be negative one time and 6 months later be positive.

So, I just decided that I was going to go gluten-free with Madi and give it a try.

Within a couple of days, we started to see improvement!  We have now been gluten-free for 5 months or so and I definatley see a dramatic difference.  The stinkiness is gone, as is the diarrhea diapers.  Yay!!!

It was kind of overwhelming at first because gluten is in EVERYTHING.  People have asked what exactly is gluten.....well, gluten is anything that has wheat, barley and rye.  But, unfortunately, many additives, natural or artificial, can contain gluten.  So, anytime you see the words:  Artificial flavors, natural colors, flavoring, seasoning, hydrolyzed vegetable protein, etc, etc (it's a LONG list)....you have to watch out, it could have gluten in it.

Another thing you have to watch out for is the ingredients in a product may be naturally gluten-free, but the product may be contaminated from where it was manufactured at.

That seems overwhelming doesn't it!!!  But, actually, there are so many foods these days that are gluten-free.  It's just a matter of looking for it.  Even your every day grocery stores have some gluten-free products.  You don't have to go to Whole Foods for everything.  The only problem we are finding is the cost of it.  Gluten-free products are defiantly more expensive.

At the end of the day....a Celiac disease or gluten-intolerance diagnosis is not the end of the world.......it just takes some getting used to.