The journey to discover celiac disease. Doctors don’t have all the answers!

Cleaning poop out of the grooves of my hard wood floor in the kitchen is not really my favourite way to start the day but somedays are just like that!

We think Alexander, our eight year old with Down syndrome, has celiac disease.  I say we think because I refuse to put him back on gluten for six weeks to do the endoscopy to officially diagnose. If you lived with Alexander, you wouldn’t want to put him back on gluten either!!

This process of discovery started in 2007.  I took Alexander so see a gastroenterologist because he was continuing to have stomach (constipation) issues and I really didn’t think having to give him a suppository every three-four days and sitting with him for an hour in the bathroom so he could poop was “normal” bowl functioning.

The Doctor was condescending but did give Alexander a blood test to check for celiac disease and scheduled Alexander for a diagnostic test for Hirschsprungs.  That test was negative but they never called me with the results of the celiac panel so I assumed they showed nothing.  Three months later I followed up just to get a copy and the Doc says the results were inconclusive.  The two key indicators; the Transglutaminase IGA AB and the Endomysial AB (IGA) were both negative.  Two other indicators were positive, the Gliadin AB IGA was 25 (negative is 11 or less) and the Gliadin AG IGG was >100 (they stop measuring at 100). We did an endoscopy which was negative. The Doctor didn’t explain much about the procedure and I didn’t think to ask too many questions at the time (I knew nothing about celiac disease at the time other than knowing about 50% of individuals with Down syndrome are thought to develop celiac disease at some point.)

I thought his blood test was interesting.  I asked questions about these numbers but was quickly told that the IGG was unimportant and obviously a false positive and didn’t relate to anything.  It didn’t make sense to me but I bought it at the time.

Move forward in time to August 2010 when his pediatrician ordered a lab panel to include his kidney function and a repeat celiac panel (we were still having problems).  Low and behold, the celiac panel came back with EXACTLY the same numbers.  The IGG was still ridiculously high.  His pediatrician didn’t know what that meant but referred me to a different gastroenterologist.  It took three months before we could get in to see her and I was again disappointed.  At no time during the appointment did she ask anything about his diet or what he was eating.  She told me to feel free to give him more mirilax if he wasn’t regular enough but thought it might be worth repeating the endoscopy to check again for celiac.  She had not seen the pathology report from the previous visit and did not even ask to see it and she could not tell me why, if the lab values were exactly the same as 2.5 years before and the pathology was negative, why would she expect a different result this time around.  One would have thought if any thing had changed on the inside we would have seen a change on the blood work.

My husband and I decided not to repeat the endoscopy (Alexander doesn’t need anesthesia if he absolutely doesn’t have to) but I decided to start a gluten free diet in January 2011. I could tell that Alexander was not absorbing nutrients like the rest of the family.  We all take a whole food supplement which has been scientifically proven to boost the immune system but Alexander was still getting sick and the rest of the family were not.   My husband was not keen on the idea of Alexander going gluten free.  He felt we were likely to see some positive benefit and then I would decide Alexander should be gluten free for life and if he didn’t REALLY need to be this would create another burden for Alexander that he could do without.

At first the special education case manager and the paras at Alexander’s school wanted me to put him back on gluten because they were seeing no benefits at school but at home we quickly saw changes, for the better, in his behaviour.  Within just a couple of weeks these changes were obvious to those at home as well as at school.

At the beginning of March, 2011 we had a follow up visit with the gastroenterologist.  I had requested that we determine if he had the genetic make up for celiac disease because if that was negative then there would really be no need for the endoscopy.  The Doctor had wanted to repeat his celiac panel lab work but he would have had to have been consuming gluten and again, I didn’t want to do that. She did, at the last minute, decide we would repeat the panel even though he wasn’t consuming gluten and the results really surprised her.

The genetic test for celiac, the HLA DQ2 and DQ8 were both positive but more amazing was that the Gliadin IgG, which had been at over 100 was suddenly at 7 and his Gliadin IgA was now at 2.9 and that had started at 25.  NOW, the Doctor, who also thought that the elevated IgG had been insignificant, thinks he has celiac disease.  Go figure!!!!

Even more interesting was that I had picked up a free magazine at vitamin cottage and there was a fantastic article on allergies.  here is what it said:

“Unlike immediate or immunoglobulin E (IgE) food allergies, which cause more obvious emergency reactions, delayed food or immunoglobulin G (IgG) allergies – more accurately called food intolerances – may not surface for hours or days and can cause less severe symptoms like wheezing, coughing, nasal congestion, skin rash, or digestive change.  Because many people never associ ate these warning signs with foods that they eat, they don’t realize the burden they’re placing on their immune system.

Common IgG culprits include dairy, wheat, corn, soy, yeast and nuts. ”  Says Michael Smith, ND, a naturopathic physician.


My Husband is now also a believer and is working hard to keep Alexander off gluten.   We went to the Pirate Exhibit and the Natural History museum and I let Alexander eat a chicken dish.  After I also ate some I realized it had a flour sauce.  The next morning Alexander cried for an hour that his stomach hurt and I ended up an hour later with poop all over my kitchen floor – which brings me back to the beginning of the article.  Some days you have to be ready to clean poop out of the grooves on your kitchen floor….

 

[This blog post was written by CSDSA member Suzanne Faber. You can find more about the Faber family journey at http://lifewithanangelisfun.blogspot.com]