Sunday, April 06, 2008

Celiac Journey: Part 1

I thought I better write part one before we get to part two. We will hopefully get to part two on Tuesday.

About 6 weeks ago we took Nessa in to Allergy Associates here in La Crosse ( One of the reasons we took her there is because I suspected she had some food allergies giving her "digestive issues" as I politely call them. I had suspected this earlier but during potty training it became even more obvious, and of course now she can talk about it. So the doctor we saw there did run food allergy tests but he also ran a celiac panel due to the GI symptoms she was having. On March 14th we received a letter in the mail with her test results. It stated that all of the tests for food allergies were negative, but her celiac panel was positive.

(Anyone reading that needs a basic definition:

I walked around in shock for hours as I was just familiar enough with Celiac that I knew this was going to be a big deal, and would not go away with age or any type of allergy treatment (as I had hoped when I went to Allergy Associates). I also knew that we couldn't merely treat the symptoms with drugs even if we wanted to. No, there is only one way to treat Celiac -- COMPLETE Gluten avoidance. This means no wheat, barely (malt), or rye products; and no products made from wheat, barley (malt), rye or a derivative of those three products, and no oats for the most part either ... and we won't even talk about cross contamination of many, many products (bulk bins at health stores, production lines that produce wheat products along with the nonwheat products, and so on).

I kept reading the paragraph over and over:

From Doctor's letter:
"Antibody assays for gluten intolerance (also called celiac sprue) are significantly positive. Anti-gliadin IgG is positive, but the most significant and reliable test, anti t-TG IgA is greatly elevated. There is no question that this means she has celiac sprue. Although the gold standard for celiac sprue is an intestinal biopsy, it is an invasive procedure which could and should be avoided."

For anybody interested in numbers, Nessa's TTG-A level was 159.74 and anything over 30 is considered positive.

And we would need to decide if we were going to pursue an intestinal biopsy or not. It is indeed the gold standard for diagnosis. The allergist doesn't think it's needed, but yet he referred us to a pediatric GI doctor that surely will think it's needed (?). When I talk to other parents raising kids with Celiac I get strong responses on both sides, and am left more confused than ever. After a few weeks of research, much thought, discussion between Shawn and I, and prayer, we have decided that we almost certainly will pursue a biopsy. The only reason we wouldn't is if the specialist feels the other evidence is strong enough without a biopsy, but that is not expected to happen.

The specialist? Oh yes. It was clear from just a couple of phone calls and a couple of phone messages from one of my own doctors that nobody in La Crosse would see a soon-to-be-3 year old for a Celiac diagnosis, so we were referred to Mayo in Rochester. And, after faxing Nessa's test results to them, we were in fact invited to have an apt. with them (yes, this is how it works). So, we have an apt. with Dr. Rayna Grothe on Tuesday April 8th at 7:45 a.m. Please send us your thoughts and prayers for this apt. to go well on all levels. And pray for my anxiety not to get out of control too! :-)

What we expect to happen on Tuesday is to have a lengthy apt. discussing Nessa's symptoms, etc., Celiac, and what to do next. And then we will schedule when to come back for "additional tests" within the next week or two, and those tests will likely include an intestinal biopsy. To biopsy a 3 year old requires general anesthesia, and that is the main risk of the procedure.

I'll try to update the blog when I can on Tuesday to let you all know how it went and where we're going from here.

In the meantime I continue to spend my spare breaths researching Celiac and how to raise a celiac child. There are thankfully some excellent resources now as compared to merely a decade ago. I have so many offers of support and assistance online that I cannot keep up with them in my meager online time (I've also been putting in overtime hours at work), and yet there are very few local resources and almost nobody I talk to here has even heard of it. There is still a great deal of education to be done so that everyone knows about this under-diagnosed disease!

I've gone through shock and a little grief already and likely will again as it is simply part of the emotional process. One thing my past experiences have taught me is not to fight that emotional process! At the same time Shawn and I both realize it is something we can easily deal with, and in fact we are so grateful that the diagnosis was a not a disease that was more immediately life-threatening or included treatments with potential (or certain) side effects. This really is very doable, and will be so worth it to have a happy healthy daughter. We're also thankful that it was caught SO much earlier than most pediatric celiac is diagnosed as frankly Nessa wasn't that sick compared to many of the stories I have already read. And it is a proven fact that the earlier Celiac is diagnosed and treated with the gluten-free diet, the less likely the individual is to develop additional autoimmune disosrders, associated disorders, or even cancers.

Just a few of my favorite sites lately (will eventually add to sidebar of blog) -- University of Chicago --University of Maryland -- Twin Cities ROCK (Raising Our Celiac Kids) -- Rochester Gluten Free Store


Rachel said...

Wow. Good luck on this journey. I'm glad you've discovered it early. My thoughts are with you.

Janeen said...

Wow, just reading this bit already and it sounds like a HUGE challenge. One question I have is won't that mean watching certain vaccines as well? Because don't some of them contain gluten? That would definitely be something to research as well.