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s&r mom

Symptoms/negative Test

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Our son is now 4-1/2. When he was born, he was uterine deficiency (born at 5-1/2 lbs), after first 2 weeks (terrible 1st 2 weeks- endles crying, no sleep) his diapers were bloody. Literally looked like blood. They told me to keep breastfeeding, elimiate things, etc. Problems continued in the immediate- got worse, they put him on ALimentum and he finally stopped crying. So we thought we had it solved. Through out the first year, always had a hard time getting himto take his bottle, he would writhe and cry when trying to feed about 80% of time.

At 2 years, during potty trainig, we realized his poops were bloody still. They had always been really soft and funky, but now we saw they were still bloody. Brght red blood on paper. For 2 years, they tested- everything from saying mild milk/egg allergy to acid reflux, etc, and thensaying actually not that. Did blood testimng for gluten/wheat, negative (which we were trying to feed him gluten free through a lot of this, on and off). Did colonoscopy- said it looked "stellar". Finally, they decided he has a "hidden" fissure that may just be concealed and so we treated with a medication, with out results. When they decided this, we went back to a regualr diet, and ignored gluten free. This has been several month now.

He is rather high-strung, will cry at the drop of a pin (which has gotten worse in the last 3-4 months). He sweats a lot (if we check him in his sleep, even with his ceiling fan running and air on 72, his pillow is wet and hair matted), he sometimes zones out when trying to communicate. Seems delayed in comprehension, albeit very mildly. On the flip side, he can put a 100- piece puzzle together in 30 minutes, memorize a storybook in 2 readings, etc. And he is very social (some say socially mature) with adults/ (not children) as well. He seems very bright except for when we try to get him to understand what seem to be basic 4-yr old concepts (like he can't focus). He can get very irritable, and if upset in any way (sometimes we don't even know what has upset him) will retreat to his room and just sit on his bed pouting.

The biggest thing is that the bleeding in the poop continues. His poop is extremely foul smelling, and he takes sometime 20 minutes on the toilet. We have also noticed his breath is terrible, and we have to really brush his teeth and even use mouthwash (since he was 3). He also has really smelly feet (since a newborn baby).

Sorry such a long posting, but has anyone had a similar experience?? Could this actually be gluten issue? Celiac? Any advice greatly appreciated as we worry that one day these symptoms might intensify or worsen and THEN the doctors finally make a diagnosis (when it might be late).

Thanks!

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I would have the doctors rule out physical causes - like obstructions etc. I would definitely pursue taking the child gluten free & dairy free & soy free. I would test him thru Enterolab.com. A lot of times the blood tests come up negative because of gluten intolerance maybe not celiac - but still just as dangerous & yes, if you keep feeding gluten he will eventually get villi damage but other things might go first...

The reason I say to test thru enterolab is that then you are more likely to get a true picture of what is going on & they also test for a problem with soy, egg, dairy. It is also good to get the gene test.

If you are not on the gluten free diet, it is very hard to understand how & why to keep your child gluten free. I suggest that you go on the diet with your child, if you are not gluten-free already. (& getting yourself tested thru enterolab would be a good idea) You cannot cook with wheat flour in the house or it will make your child sick, that kind of thing, that the gluten eaters do not think of. Going gluten free is a long term commitment & you cannot just take the child gluten-free for say a month or two & expect to see miracles, it could take 6 months to 2 years for healing at his age... the learning curve is huge. I am sure that other moms here will tell you that the first three months they thought their child was gluten-free but then realized they were making some mistakes. It happens... You have to be a detective & you have to check everything that your child eats, breathes, and touches...

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You may also want to google heavy metal toxicity (like arsenic and mercury). If I remember properly, they can cause bleeding, fatigue, bad breath etc. and are often over-looked by the medical community. Like celiac, routine blood levels are not always indicitative of toxicity (your blood level may be low, but you have enough of the heavy metal in your other tissues to cause disease). If discovered, the toxicity is treatable and health will be restored.

On the celiac side, one of my daughters (not diagnosed yet, but suspected) often has a strong body odor, which started when she was 5, and often has bad breath. My other daughter has the volatile mood thing going, as well as headaches.

Good luck!

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