Thursday, September 2, 2010

When it rains...

Naomi on her birthday
Our continual search to understand and help Naomi led us back to the pediatrician this July. Sometimes I feel ridiculous telling the poor doctor that I'm still not satisfied with the information we have on Naomi. Naomi already has enough diagnoses to mystify any doctor. Yet somehow I felt we didn't have the whole picture. I am so glad I spoke up.

The doctor ordered an extensive battery of tests that took somewhere around 15 tubes of blood--chromosomal tests, allergy tests, thyroid tests...more than I could remember. This morning we brought Naomi in for an appointment to hear the results. I was expecting to hear some more chromosomal or genetic information that may help us tie together all of her diagnoses. To my surprise, all further chromosomal and genetic tests came back normal. Instead we walked away with yet another scary and stupefying diagnosis: celiac disease.

How can one child have so many things wrong with her, yet there is seemingly no link between any of them--just that sometimes when it rains, it pours? From what I understand (and my understanding is still limited), celiac disease is an autoimmune disorder, meaning the body produces antibodies to attack gluten rather than digesting it normally. The test to measure one antibody (tissue transglutaminase) says that a value less than 10 is negative, 10-30 is low positive, and greater than 30 is positive for celiac. Naomi's level was 128! Naomi has a pediatric gastroenterologist at Riley Children's Hospital in Indianapolis already for her liver disease. The pediatrician we saw this morning placed an immediate call to the peds GI doc at Riley and told her the numbers. Even the GI doc was floored with Naomi's levels.

I guess we were on the right track removing gluten from her diet, except that now the doctor has ordered that we give her at least two to three good helpings of gluten per day for the next six weeks. We will then head to Riley, three hours away, to have an intestinal biopsy done, which will confirm the diagnosis. After that, no gluten, for life.

Next week I will have to take all four of my children in to have blood drawn. Naomi needs to have more tests run to check for other autoimmune issues and to see what the celiac disease may have damaged so far. Hannah, Emma, and Toby will all need to be checked for celiac's. That should be a fun morning--pack in diaper bag: excedrin, ear plugs, lollipops, and fun band-aids. Lunch: definitely McDonalds. Naomi needs to get her fill of eating in restaraunts for the next six weeks. After the biopsy I'm sure that will be limited.

My head isn't sure which direction to travel today. I'm so glad we found out that she had celiac disease at a young age. Many people get much more sick and wait many years to find out. Yet I feel guilty that she's had this so long and we never knew. How different would her first six years have been if we had known? But how would we have known? Her only real symptoms are her frequent tummy aches, which we were told were linked to her liver fibrosis; and her extreme mood swings, which could be linked to any number of things. I am happy that help is on the way for Naomi. I am frustrated that it will take another few months before we can remove all the gluten from her system and hope to see improvement. Matt and I really should be checked for the disease too, but that will have to wait until we have employment and health insurance again. There are too many thoughts to digest in one afternoon; somehow typing seems to help me sort it out.

The three girls and I on a carousel ride this July
Appropriately, it has been raining here all day. Drab, gray skies hang above. Drizzly rain gives way to downpours now and then. I wouldn't mind seeing the sun. There's always that silver lining though: I have a six-week break from GFCF cooking--tonight we're going out to eat.


  1. There are some bakeries and restaurants that are now specializing in gluten-free baked goods. It isn't such a dismal existence. :)

    The plus side is that you could get really good at cooking and baking with alternate flours. Gluten-free cookbook by K. Eby? :)

  2. Oh my, I am so very sorry that this is the diagnosis. I am so sorry that Naomi and you have to deal with yet, one more thing. It is just not fair!

    I am thankful that you have doctors whom you already have established relationships to work with. You are such good parents, I hope that you will be able to not beat yourself up too badly over this, as you really have caught it early. So many cases are not caught until later on in life, like my friend, Beth. I hope that this will not have to be the case for all your kids. Thankfully they can all get tested and you can know.

    Something that I read recently talked about the "why" there are so many more cases these days than ever before. Again their assertion has to do with the genetic modifications to the wheat plant that have altered the proteins in the wheat...the man who started all this from the U of MN just died this, so that was why I read about the genetic modifications. I had read about the other somewhere else. The other problem is what is put on the wheat to treat it, fungicides in particular. Unfortunately there is no way to know what is causing the problems so one is "doomed" to avoid all gluten.

    I have suspected this in myself as I have gotten older. There seem to be some auto-immune issues/questions....Nathan's auto-immune disorder to the fibromyalgia an auto-immune disorder (we have so many in the Johnson family with this).

    Oh,my, best wishes with all of this. One can only take one day at a time. Hang in there. Hopefully Naomi will soon be feeling better. Thankfully you have intervened and have listened to her "cry for help." Please know that you acted as soon as you suspected and that is a good thing!

  3. Thanks Corey and Rose, it's good to hear from so many who have dealt with this diet or read up on these issues before. I know I will be spending a lot of time researching this week into the causes, best ways to diagnose, and best ways to live with this disease. It is good to know there is support around us.