Things Were Going So Well

[stanleymonkey]

went gluten free with our nearly 3 year old a month or so ago. We had a great start, I had my beautiful happy healthy monkey back. Now she is even worse, slowly she started getting bloated again, although to the extreme as before, no appetite - or unbelievably ravenous, vicious moods, bizarre behaviour, rash around her mouth when she eats anything ( seriously anything), constipation, pale skin, looks exhausted

we have seen the head of the gastro dept at the local kids hospital and he diagnosed her with intermittent diabetes due to nerve damage caused by a virus and told us to go back to our original gastro if we felt we needed to see someone for follow ups. We see this doc on Monday but doubt he'll be able to do anything as his boss has pretty much dismissed us

its destroying our whole lives, we can't go anywhere, I take her to preschool but only because she is so exhausted to misbehave, family think she is just naughty and we are bad parents

we don't know what to do

she is definitely gluten free, all celiac tests and tests for all related conditions well within normal ranges

she has no deficiencies

she is dairy and egg free due to anaphylactic allergies,soy free on a hunch, no salt, nightshade

any ideas?

[Di2011]

Hi stanleymonkey,

I so so wish I could help I think you would have got a response from our regular forum but combining weekend and timing I *hope* this post will jump your post back up so that our regular gurus respond. Also consider posting something on "coping with" as the real serious gurus may not be parents or it was long ago.

In the mean time I will be thinking of you and you little one. I'm in the early days of dealing with my 9y/o possible DH and/or allergy so I can only imagine how horrible it is in your circumstances

[mushroom]

Wow, that is a really tough one you are dealing with, and I am afraid I have no ideas. I hope your gastro does on Monday. He can't just brush you off with symptoms like that.

[cait]

I hope you can find an answer quickly. That must be awful. I will say for me, the creeping back of symptoms seemed to be due to corn. I react similarly to corn and gluten, though not as severely to corn. But since doing a careful elimination including corn-based vitamins, I seem to be improving again. So I wonder if there's some sort of cross-reaction going on. I'm sure the last thing you want to do is eliminate another food from her diet, so hopefully you'll get a better answer.

[salexander421]

Did you have the celiac testing done before going gluten free?

I agree with the corn issue. Me and my youngest both react to corn in the same way we react to gluten. You might consider taking that out. What about processed foods, does she eat a lot of those? The best thing for her, especially in the beginning, would be eating mainly whole unprocessed foods such as meats, fresh vegetables and fruits, nuts and seeds(if she seems ok with nuts and seeds), and gluten free grains if you can't do without. Ditch the processed sugars and starchy foods as they are hard for a compromised gut to digest.

It is not uncommon to become more sensitive to gluten after going gluten free so she may be getting some cross contamination somewhere.

Have you tried keeping a food journal in correlation with her symptoms? Maybe that would help you track it down, could be another food entirely. What about citrus? I always got a rash around my mouth from citrus when I was younger and so does my youngest daughter. Hope this helps!

[stanleymonkey]

thanks for everyone's suggestions,

her little sister has started having the same sort of bowel movements that got us concerned about the eldest bad as it would be maybe notary youngest one has the same issues someone besides our original gastro might start paying attention and help us

today her spots are back on her face and bum, and her vagina is really red even though she is pottyntrained , and her belly seems more swollen on the right of her belly button and she is constipated even though she is back on the PEG

[stanleymonkey]

back from our original gastro, told him everything that is going on and it turns out that the gastro who is supposed to be the department head never told us that she has the celiac genes. Given how she first responded when we went gluten free, it is a good bet she has celiac, no endoscopy or anything needs to be done.

rash is probably DH, and sister has same rash so keep her gluten free too.

she is probably just more sensitive to gluten now she is Gr, but hey that's life I guess

if you need a ped gastro in British Columbia Canada ask to be referred to Dr mark riley, he is the only one who hasn't dismissed my concerns