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Should I Just Quit?

boho*mama

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boho*mama Apprentice
boho*mama
Posted

My son is 21 months old he was tested 3 weeks ago and although I don't have the actual numbers, I was told everything was "normal" WE deciced to keep him on the diet due to the inaccuracy of the test.

Today is day 5 if being gluten-free (last week we were gluten light-oops) and for 3 days he's had terrable diarrhea, and he vomited last night. He's lost 1.4 lbs, his tummy was swollen last night. He was diagnosed with failure to thrive so he doesn't need to be losing weight. (Though the red dry rash on his cheeks is all but gone)

I'm assuming the diarrhea is lactose intolerance, I call the doc and his nurse told me there was no indication of Celiacs so put him back on a normal diet.

What do you think? Should I pack it up and hope he's just small and will grow in his own time?

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vampella Contributor
vampella
Posted

What first comes to mind for me is, it's only been 5 days, give it time.

Secondly, have you called and checked to make sure there is no gluten(wheat, rye, oat & barley) in anything you are giving. They don't always lable these things. this I learned about a month ago when we went to buy a chilken and rice soup and aftercalling because the lable showed no gluten in the ingeds, there was infact gluten in the soup.

There is gluten in almost everything. paints, play dough?? cross contamination? Don't let doctors bully you out trying things like gluten-free because it will not harm your child to go gluten-free. Dr's don'tknow everything and no test is 100%.

If you're going to go gluten-free, you have to give it for some people months.

I hope you can figure out whats goign on with your little one, good luck!

key Contributor
key
Posted

It has only been 5 days and my son was definitely lactose intolerant for about 6 months. I have him alot of organic soy formula and soy yogurt for months, because he didn't tolerate or want everything. Now it has been about 2 years on the diet and he eats everything that is gluten free. He eats dairy fine now.

I would give it more then 5 days and take him off of dairy. The diet isn't bad for him. There are plenty of other foods for him to eat. HE may have something else, but at least take him off dairy and see how he does and be sure you are gluten free.

Monica

bchapa Newbie
bchapa
Posted

My son is 15 months old and he had the same symptoms as your child. Diarrhea, vomiting, and a bloated stomach.

Did they do an endoscope and biopsy? Or just blood work?

The biopsy is what pointed to my sons celiac dx, and it took about two weeks on a firm gluten free diet for him to start feeling better. He was also up at all times throughout the night crying. With the new diet, he now sleeps peacefully through the night.

The nutritionist told us the first thing we would notice is his stomach would go

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted
One other thing, our Gastro told us there are some viruses out there that mask the symptoms of celiac. Even though some of the villi were damaged in his small intestine, not all of them were damaged and he may not have celiac.

You can have celiac and only have some damaged villi! In fact, you can have celiac and have villi whose damage is only visible under a microscope. So not having all your villi damaged does NOT indicate that it is not celiac.

Many of us believe that celiac (defined as damaged villi) is what happens when a gluten-intolerant person continues to ingest gluten, regardless of genetics. The genes only predispose you to celiac; having the genes doesn't guarantee you have it, nor does a lack of those genes mean that you can't get it. There are people on this board who have neither HLA DQ2 nor HLA DQ8, yet they have been definitively diagnosed with celiac by biopsy.

Diagnosing someone with celiac only after all the villi are damaged is rather like diagnosing someone with a peanut allergy only after he has stopped breathing (instead of at the first sign of a reaction).

boho*mama Apprentice
boho*mama
Posted
  • Author

Well, he's not lactose intolerant, both of my other children caught what I can only assume was the rotavirus. The older children had more "classic" symptoms (the baby had no fever and when he threw up it was more like an over eating kind of vomit then a virus) so once they came down with it, we gave the baby milk 2 days ago and he's fine. I never fully apriciated the lactase enzyme until now. ;)

I'm still on the fence about gluten, on one hand it's so freeking hard to cook everything from scratch, reasearch all the time, be worried about every gluten filled crum my other kids may drop (or baby snatches) all the while knowing that this may do nothing at all. On the ohter hand, the rash on his cheaks is softer and lighter then before and he is gaining his weight back from being sick quite nicely. He's also started having a lot more words, it could be a coincidence he's 22 months old, it is about time for me to have to use both hands to count his vocabulary, but maybe just maybe he's gluten intolerant and doing better? Maybe, I know it's just day 10, but a girl can dream can't she?

kbtoyssni Contributor
kbtoyssni
Posted

I'd be inclined to take him off gluten and dairy for at least a few months. Five days is hardly any time to notice a difference. And no one NEEDS gluten to survive so you won't be doing him any harm if you don't feed him gluten.

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bchapa Newbie
bchapa
Posted

I know how you feel. But because our son is not old enough to tell us how he feels and, most importantly, because it takes so long to heal from the damage celiac causes we will not take him off of the diet for a long time.

I

gfgypsyqueen Enthusiast
gfgypsyqueen
Posted

I was in a similar position with my youngest, she just turned 2. She is very small. She gains weight, but her overall well baby percentages just keep dropping. She is barely thriving. I am a celiac. We have severe food allergies in the family. The fact that the baby was always hungry, bloated belly, barely growing, etc. we pushed for the celiac test. ANd yes we had to push hard to get her tested. We put her on the gluten-free diet the day of the biopsy. The biopsies showed nothing. She does have the gene for celaic, so i know she may get it one day. But, the gastro wanted her back on gluten, but off of milk. She has always had a problem with milk. Now we treat it like a milk allergy - no milk in any form and she seems to be doing better. We go back in another month to check. Her gatsro wanted to rule one item out at a time. Milk seems to be our problem for now.

So if you do put your child back on gluten, be sure they are testing to see what else could be causing the problems. If you keep your child gluten free, make sure you are being 100% gluten-free. Either way, if you feel your child is small and not growing well, then fight to have the baby checked out thorougly before anyone lables the baby "just small".

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