Friday, June 12, 2009

Celiac Disease

My poor, poor boy just seems like he cannot catch a break!! Honestly though, I've been suspecting this since late last year. I even started him on the Gluten Free diet myself in January, only I was never as strict as I could have been with it. I mentioned Celiac Disease to his GI dr at UMC, whom I would like to call Dr. WhoCaresWhatYouThink (Dr.Wcwyt), she told me that she doubts if it's Celiac b/c it doesn't present itself with chronic constipation, only with diarrhea. Mind you, Jayden had so many other symptoms including irritability, stomach pains, foul smelling stools, and gas. I even mentioned to her that he had been on a gluten free diet for about 2 weeks prior to the appt and that I noticed a significant change in the frequency and the smell of his BMs. She still didn't think that we were dealing with Celiac, but wanted to do a GI scope to rule out a stomach infection. So he had the scope done in February. She immediately told us about the stomach ulcers and said that she would call us with the results to the biopsy to see if he has an infection. She never called. I had to call the nurse 2 weeks later and she put me on hold and said, "The biopsy came back fine and he just has duodenitis (inflammation of the small intestine), so just continue with the prevacid 15 mg and follow up in 6 weeks." That was the point where I decided we needed a new GI and a 2nd opinion b/c I need to know WHY my 2 yr old has ulcers and inflammation in his small intestine.

So now we are seeing Dr. Awesome over at Baptist GI Associates. After the appt in April, she wanted us to follow up with her once she was able to retrieve the records from Dr.Wcwyt and see if she can get enough info from the pictures and the notes from the procedure in Feb, hoping that he will not have to have another one done. Well we went in this morning and first she asked me about the stool softner. For Jayden 1 capful (the normal dosage) is WAY too much. It causes him to have diarrhea all day and all over. A half of the capful was not much better, explosive. So really all I could give him is like 1/4 of a capful and that loosened his bowel movements but he still only goes maybe 3 times a week. So she said that is telling her that he is not just constipated alone b/c if that was the case then the 1 capful would be what he needs. So his constipation is a symptom of an underlying condition and it won't be fixed without first fixing the underlying condition. Then she said "So the Drs at UMC told you that the only reason why they thought he doesn't have celiac is b/c of the constipation?" I told her yes, and she said "Oh he has celiac disease." She reviewed the pictures and the notes from the EGD and she said it would be senseless for her to put him under to do another EGD herself b/c everything that she looks for when trying to confirm a celiac diagnosis was right there in the pictures and the notes. She said that his small intestine was very inflamed and his villi are damaged. She said instead of them looking like straight fingers, they are shrinking and looking like little balls. She also told me other significant findings from the pictures and the notes and just cannot understand why there wasn't a concern by the other Drs at UMC. She ordered the celiac bloodwork for Jayden today but she said she won't be surprised if it comes back negative. It's usually not accurate in children his age, but it may show some antibodies due to the fact that he's been eating regular bread all this week and that seems to upset his stomach more than any other non GF food. However, she said that the EGD is basically the picture of a celiac GI system and he needs to be on a 100% completely gluten free diet starting today (He had his bloodwork done this morning).

100%. Wow. That's going to be hard. Have yall seen how cute my little boy is?? He has the most beautiful eyes and those long eyelashes!! And he knows how to use them to get what he wants...



Man, I feel sorry for MYSELF!!!

4 comments:

Jess said...

I'm sorry about the Celiac dx, but HOPEFULLY it's a step in the right direction to getting him feeling better.

He IS one beautiful boy, though, that's for sure!! :)

rebecca jeanne... said...

He is so gorgeous! I hope that going gluten free helps!!

LL said...

I am not surprised either. I remember that you mentioned the possibility of CD a while ago too. You will be amazed at how many products are gluten free and we just don't realize it. Even if you are not a fan of hers you should check out Elisabeth Hassleback's book: The GF Diet. I am pretty sure that it lists a lot of companies/products that are GF. I remember that Tostitos is one of them and I was quite surprised and I think the Klondike ice cream bars are too...YUM!

Gloria said...

oh gosh, Nia, so sorry you have something else to add to your list! i am glad that you now have a diagnosis with specific recommendations for treatment! love the humor in your posts (dr names), and yes, J is absolutely adorable!!! very handsome little guy!