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Update On Post And New Question About Endoscopy

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. Thanks to anyone who can provide ANY advice

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UPDATE:

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!

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michelleatwt Newbie
michelleatwt
Posted
  • Author

and also...is it an inpatient or outpatient procedure? Thanks! ;)

Kipp Newbie
Kipp
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. Thanks to anyone who can provide ANY advice

---------------------------------------------------------------------------------------------------

UPDATE:

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!

Kipp Newbie
Kipp
Posted

Hi, I have not posted on here before but I really wanted to share as short as I can my experience. My son who is now 13 has been gluten free for about a year and a half along with myself in support of him. He had many of the problems you mention about your son and there were many times I wanted to pull my hair out in frustration! From a baby he had lots of problems from heartburn, vomiting, ear infections, diareah, headaches ect... the list goes on and he was very small and had the tummy. Long, long story very short a few years ago he had a blood test done and the Dr mentioned putting him on a gluten free died (I had no clue what gluten was). We tried it but not cutting out all gluten. He missed 5 weeks of school in 5th grade and we had him tested through entero lab, which you can find online and send out a stool sample. I think my husband and I needed proof but in the end when his results came back as gluten intolerant we did the diet and that was all the proof we needed. Within a week of being on it his symptoms disappeared. He had dozens of problems and everything is better (even his cronic ear problems are gone). He grew 6" in less then a year and is still growing. It is to us all amazing. Try it for a couple weeks, you will see the difference if that is his problem. You can always put him back on it if you want that test done but in the end whether you have it done or not there is no drug for celiac the medicine for celiac is a gluten free diet and it works! Good luck to you and I hope your son is feeling better soon

Rondar2001 Apprentice
Rondar2001
Posted

Hi,

Our daughter's experience with the biopsy was that it was basically a piece of cake. Her's was done in our city's children's hospital and we went home the same day.

The hospital had us come in for a group session a week before her procedure. They had all the parents off to one side of the room filling out all the paperwork, while the kids were in a circle reviewing what they could expect for their type of procedure. They showed them the masks that would put them to sleep and what activities they could do until they went in to the OR (i.e., DVDs, colouring). We all went on a tour of the area so we would know where to go, where the parents wait, where the popsicles are kept for afterwards, etc.

The day of her procedure we arrived at the hospital at 7 am. She was taken to the OR at about 9. Less than an hour later she was back in her bed and we were home by noon. She did sleep a few hours that afternoon, but had no pain or issues afterwards. The next day she was back to school.

The only prep was they can't eat after midnight the night before. I was told that they try to schedule the youngest patients earliest so that it is a little easier on them. She was eating shortly after the procedure.

Our doctor saw visual damage and said that we should make her eat gluten free right away. The official biopsy results were ready about 10 days later.

Hope this helps and good luck.

michelleatwt Newbie
michelleatwt
Posted
  • Author

I have made the decision regardless of the biopsy results I will be starting him on the diet, if he gets better that is all the proof I need and I am almost certain that is what he has. I am going to hold off just until next Friday for his endoscopy, but as soon as he leaves regardless of what they tell me I am starting him on it. I am not going to wait years for them to diagnose him while he suffers. Thanks so much for your response!!!

Kipp Newbie
Kipp
Posted

Way to go!, you have me in tears just remembering what it feels like to be where your at. Your his mom trust what you know! :D

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nasalady Contributor
nasalady
Posted
I have made the decision regardless of the biopsy results I will be starting him on the diet, if he gets better that is all the proof I need and I am almost certain that is what he has. I am going to hold off just until next Friday for his endoscopy, but as soon as he leaves regardless of what they tell me I am starting him on it. I am not going to wait years for them to diagnose him while he suffers. Thanks so much for your response!!!

FYI, going gluten free can be a bit of a challenge, because gluten can be anywhere.....you may have already realized that you'll have to replace a lot of your kitchen utensils, pots and pans, toaster, etc. Or you could buy a set for him and set up a gluten-free area in your kitchen where no gluten is allowed. That's harder (having both gluten and non-gluten foods in your kitchen) because of the risk of cross-contamination....but you'll have to decide what's right for your family.

But don't be discouraged! It definitely gets easier! As to meal planning, the easiest way to start is to identify which foods you eat now that are naturally gluten free (meat, fish, chicken, eggs, nuts and nut butters, veggies, fruit, rice, polenta, potatoes, corn tortillas, etc.). For processed foods such as corn tortillas always read labels to make sure they haven't put any wheat in there.

Here's a great article on how to go gluten free (a post from Karina's Kitchen):

Open Original Shared Link

Good luck with everything...please keep us posted!

JoAnn

michelleatwt Newbie
michelleatwt
Posted
  • Author

I would like to thank everyone for their kind words and great advice!! You have no idea how appreciated it is. :D

chiroptera Apprentice
chiroptera
Posted

I just wanted to mention that a lot of people with Celiac/gluten intolerance are also lactose intolerant. So that's just something you may want to keep in the back of your mind in case (hopefully) your little does better on the gluten-free diet, but you still sense there is room for improvement. Then, sometimes once the gut helps from the gluten damage, people can go back and eat dairy/lactose again with no problems.

Very very best of luck!!!!!!!!!!!!!!!!!!

And, although we too tested thru Enterolab and chose not to have our children have biopsies, I have read and been assured that it is very safe for them, should you decide to do that.

seezee Explorer
seezee
Posted

We found out a few months ago. The doctor told us the + celiac blood tests are 94-97% accurate - so there is about a one in twenty chance it's something else besides celiac when you have a positive blood test. The doctors felt really strongly about getting the biopsy to confirm celiac. There are some very rare liver and pancreatic problems that they tested my daughter for in addition to the biopsy that can cause the + celiac blood test results. (hers were all negative) She stopped eating gluten immediately after all the tests are done and is gaining weight and getting stronger and is feeling way better.

The endoscopy was pretty straight forward. She went in in the morning and was out by noon. She doesn't have any symptoms of lactose intolerance, so they said not to stop dairy. I cried when I found out and felt overwhelmed but it's actually OK. It is always better to know what it is and that you can fix it and know how. We had an appointment with a nutritionist who explained how to read labels and set up the kitchen that really helped. We may make another one to make sure that we feed her a good/balanced diet. I notice most gluten-free products are rice based and void of nutrients.

  • 2 weeks later...
Lindaa Newbie
Lindaa
Posted

Hi,

Please understand firstly that I am no medical expert but just another person with celiac hoping to shed some light on your son

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