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All Tests, Except Biopsy, Negative But Going Gluten Free

balmerhon

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balmerhon Rookie
balmerhon
Posted

I'm waiting for the letter from my son's consultant, but I spoke to his nurse today and everything they tested for has come back negative. DS is at University of Maryland who are great with Celiac and other digestive issues. So I know they are doing the right tests (I hope to have a copy of everything in hand soon).

We don't have an appt until July 6 for a follow up. So I don't know if they will suggest a biopsy but, from what some others here have said, I suspect not.

My son has diarrhea (not always watery, but always very soft). He is off the chart with BMI but ok for height. His weight is almost off the chart.

Aside from that, no other symptoms.

We have started him on a gluten free diet this past Sunday (so only 5 days into it) and there are no changes so far.

How long should I expect before I might see some changes?

Also, DS is very picky. So finding things he'll eat is hard at best. Gluten free is even harder. He also LOVES fruit. So I'm wondering if this is a problem, too. I certainly hate to take away fruit - what's left?! I do try to limit it - he'd eat it all day if I let him!

My aunt is a nurse. She's wondering: if his tests are all negative, does he just need more fiber to bulk things up?

I'm so confused. I'm gonna be even more confused if eliminating gluten doesn't change anything. :(

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Foxfire62 Newbie
Foxfire62
Posted
I'm waiting for the letter from my son's consultant, but I spoke to his nurse today and everything they tested for has come back negative. DS is at University of Maryland who are great with Celiac and other digestive issues. So I know they are doing the right tests (I hope to have a copy of everything in hand soon).

We don't have an appt until July 6 for a follow up. So I don't know if they will suggest a biopsy but, from what some others here have said, I suspect not.

My son has diarrhea (not always watery, but always very soft). He is off the chart with BMI but ok for height. His weight is almost off the chart.

Aside from that, no other symptoms.

We have started him on a gluten free diet this past Sunday (so only 5 days into it) and there are no changes so far.

How long should I expect before I might see some changes?

Also, DS is very picky. So finding things he'll eat is hard at best. Gluten free is even harder. He also LOVES fruit. So I'm wondering if this is a problem, too. I certainly hate to take away fruit - what's left?! I do try to limit it - he'd eat it all day if I let him!

My aunt is a nurse. She's wondering: if his tests are all negative, does he just need more fiber to bulk things up?

I'm so confused. I'm gonna be even more confused if eliminating gluten doesn't change anything. :(

If biopsy is negative, then more fiber is warranted or maybe check for colitis or crohn's disease; these are also autoimmune disorders that can cause same symptoms.

swalker Newbie
swalker
Posted

Has he been tested for fructose malabsorbtion? It's an easy breath test. One of the main symptoms is usually cramps but it maybe not always? It's getting to be more common all of the time and the love of fruit and D are two of the main symptoms.

Courtnee80 Newbie
Courtnee80
Posted

Your son sounds just like my 6 year old son. I'm not sure what to do anymore. I just started him on a gluten free diet today I'm really hoping it will work. My son had a biopsy done when he was 2 but that and all the follow up test have come up neg. I've tried doing the more fiber thing but that didn't work. I know my sons doctor told me to do the diet for a month and then try reg. food again to see if diarrhea(if it ever went away). My main concern is his slow weight gain only about 1 1/2lbs in the past year and lost about 1/2lb in past 3 months. I hope it works out for your son.

balmerhon Rookie
balmerhon
Posted
  • Author
If biopsy is negative, then more fiber is warranted or maybe check for colitis or crohn's disease; these are also autoimmune disorders that can cause same symptoms.

I'm assuming (and will confirm once I have the paperwork) that they have tested for this. I know they tested for blood in his stool.

Has he been tested for fructose malabsorbtion? It's an easy breath test. One of the main symptoms is usually cramps but it maybe not always? It's getting to be more common all of the time and the love of fruit and D are two of the main symptoms.

No, he hasn't. I'll look into this more. No cramps, but you never know. Thanks!

Your son sounds just like my 6 year old son. I'm not sure what to do anymore. I just started him on a gluten free diet today I'm really hoping it will work. My son had a biopsy done when he was 2 but that and all the follow up test have come up neg. I've tried doing the more fiber thing but that didn't work. I know my sons doctor told me to do the diet for a month and then try reg. food again to see if diarrhea(if it ever went away). My main concern is his slow weight gain only about 1 1/2lbs in the past year and lost about 1/2lb in past 3 months. I hope it works out for your son.

Good luck. Let me know how you do. I'm going to give it two weeks and evaluate from there.

BTW, can I ask how you managed to potty train a child with diarrhea?!

happygirl Collaborator
happygirl
Posted

Even if they do not think gluten is the problem, and his bloodwork is fine, they may choose to do an endoscopy and/or colonoscopy to rule in/out other problems that aren't diagnosed via bloodwork.

Good luck, I hope you find some answers soon.

Courtnee80 Newbie
Courtnee80
Posted

Potty training was messy but since he didn't have diarrhea all the time we managed. I think it took a little longer about 6 months till he stopped having accidents during the day. He still has accidents at night. Its really hard to wake up at 2am and clean up diarrhea off the bathroom floor(so glad he can usually make it there). He gets so upset and I feel so bad for him even though I'm usually not in the best mood. I really try not to blame him because its not his fault. This is one of the reason I'm doing the gluten free diet even though the test have come back neg. I'd try anything at this point its going on 4 1/2 years since it all started. He has been tested for everything. Does your son have any bahavior problems? My son does and the doctor thinks maybe switching his diet will help there as well.

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