1/15/10

My Main Max

Warning, a long narration/venting post of a slightly neurotic mom


The last few months Mike and I have been feeling like something has been a little "off" with Max. He's looked pale and had dark circles under his eyes and his diapers...well no extra detail is needed. Just before Christmas Mike had some time off and we took the boy's passport pictures for an upcoming trip to Canada.

This is Max's picture...


















I know! He just does not look well to me. He hasn't complained about not feeling good, but for our own piece of mind we got him an appointment with his Dr. I was a little extra concerned because in my family we have a couple members who are diabetics & several who have celiac disease. We told the Dr. our concerns and he immediately suspected Max was anaemic more than anything else (which had not occurred to us), so we were off to do a bunch of tests including for leukemia. Umm, can I just say my stress levels tripled at the mention of that!

So we waited the few days for results & Wednesday called the Dr's office. The nurse told me his results were in and everything was fine, he's just one of those kids who is going to have dark circles. Naturally we were relieved, but something still told me there has to be something up with him. Yesterday we got back from a play date and there was a message from his Dr. that his immunoglobulin A (sp?) levels were high which is consistent with Celiac disease. He said we had a couple options; have him re-tested, get a biopsy or put him on a gluten free diet to see if symptoms go away & then re-introduce gluten to confirm it. What the crap? Why did they tell me he was fine the day before!

Celiac disease is basically a problem where gluten can not be processed by your small intestines. Over time it builds up & damages the villi in your intestines and malnutrition, organ failures, seizures, etc. can occur.

Retested- no thanks. The blood test was a nightmare in the first place. It took both Mike and I to hold him down.
Biopsy- not really sure we want to put him through that right now.
Gluten free diet- gonna give it a try.

That means no wheat, barley or rye. No breads, crackers, cakes, or cookies. No sacrament bread, no fish crackers in nursery, no Madeline's from Starbucks. It's seriously crazy how many foods have gluten in it. For instance Carmel coloring, modified food starch and malt flavoring are among some things that he can't have. Who knew most Gatorade's have modified food starch? We dropped some serious cash at Whole foods last night getting him gluten free treats and meals to try. Honestly, I doubt he'll know the difference at this age. I think Mike and I are taking it way worse. As odd as it seems, I am grateful to have family members who have it that I can turn to for recipes and help. Max's bestest cousin Carson has it and at least he'll have someone else eating the same things he is, & I've never heard Carson complain.

So, for the time being Max is on a gluten free diet. Just because his immunoglobulin levels are high doesn't mean he has it, but for us the right thing is to try this diet and see if the symptoms go away.

Fingers crossed.

5 comments:

dietcokegrrl said...

Oh no!!! Sorry about the gluten free lifesyle, but at least you can try it and see if it makes a difference.

Trader Joe's has lots of gluten free stuff--including their delicious frozen banana waffles. Hope it makes an improvement!

http://dorisandsam.blogspot.com/2009/01/trader-joes-tuesday-banana-waffles.html

sachia said...

Your a good mama for noticing the first "something isn't right feeling" with his passport photo! You are already ahead of everyone else with this because of all of your family members that have it. Let me know what kind of rice krispy treats I can bring over for Maxie Poo and in the mean time hang in there, call me anytime.

On a side note, that something isn't right feeling hit me today and I took Sienna to her doctor and she had double ear infections. No fever, just ear infections. Aye.

Jean said...

Awwww!! Rebecca!! That is stressful. But if anyone can whip up a gluten-free menu that's still fantastic, it's you. I'm sorry that it's been crazy for you guys. But kudos for picking up on the really small clues that maybe Max needed to be checked. I don't know if I'm that observant! You're a great momma. :-)

La La Land said...

Fingers crossed, for sure! I am so sorry. I know several people with that and it is hard to eat! But, FYI, PF Changs has a gluten-free menu. It's good!

The Facks of Life said...

You need to talk to Annette and Benson. Benson and Rachel are both on a really strict gluten free diet. Annette makes her own bread every week and has some good recipes. She's an expert!

I did a gluten free diet for months when i was trying to find out what triggered migraines for me. Whole foods is gluten free heaven. Good luck girl!