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Son Being Tested For Celiac, Have A Question

michelleatwt

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michelleatwt Newbie
michelleatwt
Posted

My son is being tested for Celiac disease. He has had chronic diahrea for about 2 years now which has the worst smell in the history of the world (seriously whole house smells like a portapotty), weight loss and no height growth, but a constant appetite...he is ALWAYS hungry and will eat until I MAKE him stop, he continues to say he is hungry, then within 8 hours he flushes his system again. He bruises extremely easily and his hair is starting to fall out all over my poor babys head. He gets irritated by little things easily, he has a very bloated stomach and stick like extremities, he has horribly dry skin and gets these rashes on his bum that bleed and puss and are nothing like diaper rash. He has been tested for diabetes, parasites and a bunch of other things. I finally took ALL the symptoms in together (didn't think any of them were related before) and I have been waiting on his Celiac test for a week now, and just stressing. Does this sound like Celiac or does anyone know what else it could be? Doc is pretty sure thats what it is, but they have been saying that for 2 years now about everything and I am beginning to wonder if they will ever diagnose my son with anything. :unsure: Thanks to anyone who can provide ANY advice

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OptimisticMom42 Apprentice
OptimisticMom42
Posted

It very easliy could be. You should know that the blood tests and scopes are rather unreliable. A negative test result does not mean that your child does not have celiacs. It means that evidence of celiacs wasn't found. Positive response to a gluten free diet IMHO is the only way to know for sure.

The diet can be very easy to follow if you stick to the basics, freshly cooked meats, fruits, vegetables, rice... minus any food allergies (has your child been tested for food allergies?).

At least three of my family members have celiacs. Only one was tested and his blood test was negative. But none of us can eat gluten containing foods without being really miserable. We have no problem maintaining a gluten free kitchen with great meals.

Last night was taco salads followed by peach cobbler (Bob's Red Mill gluten free oats), night before that we had chicken bites in Sweet Baby Rays BBQ sauce, rice and corn on the cob followed by spice cake (gluten free pantry).

Hope your child is feeling well soon,

RA

michelleatwt Newbie
michelleatwt
Posted
  • Author

Yes he has been tested for allergies as well and he has no common allergies that they could find. I just hate seeing him this way. Thanks a bunch for all your help!

nasalady Contributor
nasalady
Posted
My son is being tested for Celiac disease. He has had chronic diahrea for about 2 years now which has the worst smell in the history of the world (seriously whole house smells like a portapotty), weight loss and no height growth, but a constant appetite...he is ALWAYS hungry and will eat until I MAKE him stop, he continues to say he is hungry, then within 8 hours he flushes his system again. He bruises extremely easily and his hair is starting to fall out all over my poor babys head. He gets irritated by little things easily, he has a very bloated stomach and stick like extremities, he has horribly dry skin and gets these rashes on his bum that bleed and puss and are nothing like diaper rash. He has been tested for diabetes, parasites and a bunch of other things. I finally took ALL the symptoms in together (didn't think any of them were related before) and I have been waiting on his Celiac test for a week now, and just stressing. Does this sound like Celiac or does anyone know what else it could be? Doc is pretty sure thats what it is, but they have been saying that for 2 years now about everything and I am beginning to wonder if they will ever diagnose my son with anything. :unsure: Thanks to anyone who can provide ANY advice

It sounds VERY much like celiac disease: chronic diarrhea, weight loss, bloated stomach, hair loss....these are some of the classic symptoms. I'm so glad he's being tested, but please be aware that the tests have a high rate of false negatives, especially in small children. My own granddaughter Carly had to be biopsied twice before they found any damaged villi, even though she had exactly the same symptoms as your son, and was just skin and bones. She never did have a positive blood test, even though she DEFINITELY has celiac disease!

The tests you refer to...are they just blood tests? Your son will have to continue to eat gluten-y foods until after the biopsy, if the doctor has not yet done that, and if you decided that it's necessary.

The rash on his bottom....does it look like blisters? Does it turn dark purple as it heals and do the purple spots stay there for weeks or months? If so, please take him to a dermatologist and have them biopsy his skin when he's having a breakout and test him for Dermatitis Herpetiformis, which is the rash that sometimes accompanies celiac disease (it's considered to be "celiac disease of the skin"). The derm should biopsy the clear skin next to a blister or lesion, not directly on the rash itself.

In any case, whether his tests come out negative or positive, please start him on the gluten free diet as soon as possible. The very best test for celiac disease or gluten intolerance is the diet itself, because if he is gluten intolerant, he will start to improve quickly on a gluten free diet.

Here is a helpful link about how to go gluten free:

Open Original Shared Link

Good luck!

JoAnn

michelleatwt Newbie
michelleatwt
Posted
  • Author

Ok, so one blood test came back high, one came back negative and one can back inconclusive and they were unable to read the levels. Doctor still supsects Celiac and has scheduled a Endoscopy for next Friday. How long does it take to get the results on those? How long do they take? Is it painful for him? Thanks so much!

ang1e0251 Contributor
ang1e0251
Posted

That's great that your dr got you in so fast! That's neat because so many dr's throw it out if the bloodwork isn't "perfect". You have a positive reading in blood. Even though it's only one of the levels that's OK. It will help him get a dx.

Keep him eating gluten till his endoscopy then the minute it is over, go gluten free. Do Not wait for the test results. It will take a few days for those. Even if after a few days, the results are negative, keep going with the diet. Children and adults can have a negative scope and still have celiac disease or gluten intolerance. His reaction to the diet will be the final piece to the puzzle.

It's tricky to go gluten-free but just start out simply. Make him whole foods that you prepare yourself. Meat, beans, rice, vegetables and fruits. Make sure he's getting plenty of dietary fats. You can add coconut milk to his foods and avocado as well.

I'll be thinking of you.

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