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So drained….

March 9th, 2010

We’ve had a bad weekend into the week with J, and both James and I agree that we can’t keep this up much longer. Perhaps it is because E was sick at the same time and we were both stressed about the idea that the surgery wouldn’t proceed (he has his pre-op tomorrow and he has to be well then (and obviously on surgery day) . Perhaps it’s because J had a really rough few days and I feel angry about not being listened to about him - reflecting back on visits. I do know what I am talking about and there is something not right with J.

I talked to James on his lunch hour and typed the words while crying, J had another digestion issue. He woke up ice cold and pale. His temp, 96.4. Got him some milk and covered him in a blanket. Debating to take him to the Dr (call the nurse) because at the same time E had finally dipped below 100 of her 103 temp the night before. I didn’t want to ruin things for Wednesday and was sure if we went - probably would.

I started googling things, to try to figure it out. All I could resonate was how little he ate the prior two days -and how little he drank the day before too. (his pattern when he’s having bad digestion times). James suggested apple juice, but we weren’t sure would he just bring that all back up but as he didn’t get better I gave it to him.

Thankfully in an hour’s time he was back to himself mostly. He still acts odd when he’s in his bad digestion place - and sure enough a little while later he’s gone bathroom and it results in a mess that sends me to tears.

Perhaps I feel helpless as I/we need to keep poisoning our child - which I get but it feels so wrong at the same time. Perhaps it’s because few people seem to ‘get it’ and it’s so difficult to understand even when we read about it. Many offer nothing but the most support humanly possible.

Later in the day - we have the usual joint pain which has seemed to be sloughed off as a symptom by any Dr. I’ve told it to. I don’t know if Celiac is the answer to what is up, but something…. something is 100% not right. I only hope if it isn’t Celiac that we are able to correct it by going wheat free 100% (which is essentially gluten free because well wheat is the biggest offender and as I wrote before there are few items out there when we needed them that were wheat free but not gluten free). Because the thought of more tests and doctors and experimental taking off and on food I’m just not up for today.

In the long run, J will be better off diagnosed. But he’s 2 1/2 and should be being a kid and on the days of his ‘flare ups’ he’s not even close to that.

I joined a group several months back on Facebook - which is where I spend most my free time during the day-yes I’m an addict. The Celiac Handbook. Most the people we’ve talked to seem perplexed by the idea that someone could have both wheat allergy & celaic, in fact the Dr J sees nurse said they’ve never seen a case in all her time working there.

So for anyone interested in what this might mean for J.
What is Celiac?
Celiac Disease is an autoimmune disorder ( an overactive immune response of the body against substances and tissues) of the small intestine.

Celiac Disease is caused by the inflammatory interaction of gliadin and the enzyme tissue transglutaminase. This inflammation flattens the lining of the small intestine and thus impedes your small intestine’s ability to absorb nutrients. The best and likely only way to deal with this disease is a strict gluten-free diet.

What is gluten?
They exist in the grass-like grains wheat, barley, rye and spelt.

What is the difference wheat allergy/gluten intolerance (celiac)?
In most cases, celiac will be systemic and result after consuming gluten after a period of time. Symptoms of wheat allergy will instead be more like a reaction to a peanut allergy (hives/rash, ect) and be per instance of contact/consumption.

As an example. J has toast for breakfast, his breaks out in a rash (wheat allergy). He continues to eat toast for the next 4 days - each day getting a rash. On the 5th day he has a digestion issue (celiac).

The main thing the Drs keep repeating to us is about J growing (on his own curve) just fine and how that’s an indicator in children- He’s still smaller than most kids his age but has grown consistently since he was a few months old . I guess we’ll hopefully find out in a week.

I really, we really, really want J to just be 2 1/2. Not unwell all the time.

Entry Filed under: Baby