Our family is growing in many ways... Growing in numbers, knowledge, parenting skills, growing in love, in our faith, growing our culinary skills (if you can call it that), growing without gluten (some of us), growing green...........

Monday, February 1, 2010

Overwhelmed

It's been a while, I know. I do plan on writing about more than, as a friend would call it, Aiden's Red Chair posts. But I've been a bit overwhelmed lately. I have mentioned a couple times that we are having some problems still with Aiden and are looking into other food issues. It seems that has consumed my life these days. We were trying to keep it under wraps until we knew more, just telling close family and maybe a couple friends. I've posted about it just a little lately on facebook...more b/c I needed some support after feeling so defeated here and there.

Long story short...we are looking into problems with gluten. Does Aiden have celiac disease? We're not 100% sure, but it does look to be very likely. Ok, we're pretty sure he does. I like to KNOW things and have a hard time saying it is so without hard facts to back me up (um...with certain things..I am not like that with my faith, but with things like medical issues, yes, I am). We have not had the blood work done yet. This is where I am beginning to feel overwhelmed, really. I read up on this before taking him off the gluten, and I do know that he needs to be ON gluten in order for the tests to be accurate. Actually, I was going to go off gluten myself but did the blood work for me first. BUT I didn't want to do anything unnecessary with Aiden...why subject him to a needle and a bunch of blood being extracted just b/c of a hunch. (I know, I know...mother's intuition...we need to learn to rely on it a bit more, but I wasn't so sure this was the problem. We had already tried dairy with no changes; this was just the next step.) Anyway, so we went and took him off gluten and even mentioned this to our family doctor.

I'm skipping a lot of details here, but you'll get the gist. I'm battling some nasty sinus pain, so I'm just getting out what I feel I need to for the moment. This is mostly about me getting things off my chest. The informative stuff will come later when we know more.

So, off gluten...the symptoms went away. Completely. It was rather exciting. And I know some people who know what gluten is might think it's a difficult diet, to be gluten-free...but it really isn't for us. We don't eat many processed foods, and there are gluten-free alternatives to things like crackers and bread. It's not exactly the same, but still. And if we find out this is it for sure, there will be adjustments for learning to bake and cook with other types of flours, but we'll figure it out. Aiden eats mostly whole foods anyway (all of us do, not just him), so it really wasn't too difficult at all. It might sound strange, but I would get so excited when I would change his diaper and see a "normal" poopy diaper! Before, he was having 4-5 explosive bowel movements a day (I mean filling the ENTIRE diaper)...very soft ("wet," not just soft...but not quite diarrhea). It seemed like everything he ate was just going right through him. And the foods he eats are, like I said, mostly whole foods and things that should "bulk up" a diaper. These diapers should not be happening and are not what one would call normal for this age. But off gluten...things were as one would expect.

Anyway, after three weeks, time to go back ON gluten. If the symptoms reappear, we have our answer. It's a lot that the symptoms went away after removing gluten, but you also want to see if they come back with the food back in the diet. After a few days, we started to see the symptoms return. Not fun to see, esp b/c these diapers bring terrible, terrible rashes, regardless of treatment. But reassuring nonetheless. I mean, this would indicate we have our answer. Right? Well, the problem is...we aren't seeing the symptoms consistently. He'll have a day with them, a day without, etc. Why? Because the little stinker doesn't want to eat the stuff with gluten!!! I did not foresee such a problem. He will not eat bread, biscuits... He will eat crackers some but not many like he used to. I've made muffins, and he liked those some. He loves pasta, too, but we have to give him gluten-free brands b/c they're the only ones that can say for sure their pasta is made in an egg-free facility. So, we're finding it more difficult to get gluten into his diet than it was to get it out! Who woulda thought?!

The problem with this?? Testing. As my mom said, it looks like we have our answer, regardless of testing. But, as I reminded her...this is ME we're talking about. I want to KNOW. I have this need to know this is the right diagnosis. Plus, I don't want to have to restrict his diet in such extreme ways if it's not necessary. Gluten-free is not bad for you at all - quite the opposite - but there will be instances it will be difficult and limiting. I have talked some with my friend who is a pediatric dietitian, and she agrees it really sounds like celiac, but testing will tell us for sure. Yet, how can we test when he won't eat the darn stuff?! She's recommended going to a pediatric GI, and another friend has recommended one that works at the Duke Children's Hospital, which is where we would be sent. We're waiting on our doctor to refer us so we can get in to meet with this guy or even just ask a few questions over the phone. We're hoping he can give us some instruction or advice. Here I am breaking all my food rules and doing everything I can to get this child to eat gluten, and it's becoming terribly difficult. I hate doing it...b/c if he does have celiac, the foods are actually making him less healthy, but if we are to test for this, he has to be consuming gluten. (And I keep warning him, once this is figured out, the rules are back ON. Ha.)

This really is driving me absolutel crazy. On one hand, we weren't sure enough to do testing first and both felt it was better to try the elimination diet before subjecting Aiden to unnecessary testing. But now, I'm totally regretting that decision because we don't know how possible testing will be because of his current diet. I'm not even sure how long he needs to be consuming gluten, but I know a few days or couple weeks (after being off it completely for three weeks) isn't enough. I'm doing a bit of beating myself up over all of it because perhaps we could have had our answer by now and been on our way. Instead, I'm consumed by all of this...watching every little thing he eats, trying to make him eat what he doesn't want (and you know what he wants to eat...things like peas and carrots and fruit...wonderful things...just not breads and things with gluten!!), writing down every thing he eats, writing down when he poops, how much, all the details around it (these are records my friend told me to keep...to show the doctor and for her to look over if gluten isn't the culprit). Almost every thought I have is about this. On the days he's not showing symptoms, I'm checking his diaper nonstop. When he does, we're watching for the rash to return and questioning what to put on it this time and why it keeps doing this. Aiden is constantly pulling on his pants and scratching...even when the rash has taken a break. Diaper changes are very difficult lately. It's frustrating for all of us. And all of the symptoms and problems have been going on for MONTHS, so this is not something new. It is something we are ready to have the answers to so we can move on and get past it already.

Any suggestions?? Any ideas for ways to get him eating gluten? We welcome them. We also welcome good thoughts and prayers. Hopefully we'll have some actual news soon...whatever the answer is, we hope to know it soon.

4 comments:

Becky said...

What a bummer! I hope you get answers soon so you can ease your mind and move forward. Have you tried English muffins? Colin loves them with peanut butter. Also we occasionally allow Colin to have Club crackers (which have HFCS but it is one of the last ingredients, so..) he really loves those too.

Good luck. Keep us posted

Mama Goose said...

Wow how frustrating. You are such a good mom to be going through this with him. I know it's horrible now, but maybe if you can put in an investment of time and effort now, but if you KNOW, you won't have to do it again - right?

I hope you get it figured out soon.

Life Scraps and Patches said...

I have no ideas for incorporating glutin - just wanted to say that Aiden has exactly the mom (and dad) that the Universe knew he should have. He and Camden are lucky guys.

Daisy and Ryan said...

Thank all of you lovely ladies for your comments. :) It really helps.

We do have some good news...we got a referral to the ped GI. I had called the dr office yesterday, even though our dr isn't in on Mondays. She got the message this morning, and we got a call at 8am with an appt to see the GI THIS THURSDAY!! Wow! It's the one we wanted to see, too. (Amy - it's one that Melissa recommended that she works with some...she says he's the best in that dept at Duke.) :) So, we'll be back at Duke Children's Hospital on Thursday...hoping to find something more out. He might not do testing then...might be a couple weeks. I talked with a nurse there, and she also said that Aiden only needs to get a little gluten in his system each day to count...the equivalent of a graham cracker. What a relief!! So, I can relax a bit. We'll see what they say on Thursday.

I'm excited to be getting in so soon. But I'm also really nervous. I keep thinking...what if this isn't it?! I want a clear answer..but I want an answer about what it IS, not what it's NOT. *Sigh* We'll see... At least we are this much closer, though. :)

We did have pizza last night and for lunch today...Aiden definitely scarfed that down! :)