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Biopsy Results Back - Need Advice

gfgypsyqueen

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gfgypsyqueen Enthusiast
gfgypsyqueen
Posted

A few weeks ago I posted that my 2 yr old was about to go in for her biopsy. We put her on the gluten-free diet that day.

The results from the tests just came in. "Only has one positive for celiacs out of seven. Does not rule out celiacs, but highly unlikely that she has it." We go in for the official reults in a few weeks. Then I will get all the numbers.

She has been gluten-free for almost 2 weeks. (never realized how hard it would be to keep a baby gluten-free!) The doctor wants her back on gluten until she gets better from a non-celiac disease related illness. He also wants us to visit with the dietician. Has anyone had luck with a dietician?

My problem is the baby went from 75% to 5% in growth and height in less than a year, complains of stomach pain, has a semi-hard bloated belly, is intolerant of milk - even small amounts, and she is always hungry.

Does anyone have high calorie snacks that are kid friendly and cannot have any form of nuts?

Does anyone have any thoughts, suggestions, or ideas about what might be wrong? Any ideas about other medical issues to look for?

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Jestgar Rising Star
Jestgar
Posted

You aren't going to put her back on gluten, are you?

lovegrov Collaborator
lovegrov
Posted

First, I'm not a doctor. And I'm not 100 percent sure what the doctor is saying. But if he's saying that one out of seven biopsy samples was positive for celiac, to me that means your child has celiac. You take multiple samples (congrats to the doctor for doing that) because celiac damage can be patchy. Part of your small bowel can look perfectly fine while another section shows obvious damage.

richard

kbtoyssni Contributor
kbtoyssni
Posted

I also don't think putting her back on gluten will help her recover from a non-celiac illness. If she does have celiac, putting her back on gluten will completely overload her immune system, and it will be hard for her to get better. If she doesn't have it, well, not eating gluten isn't going to hurt her body's ability to fight the illness. Nobody needs to be eating gluten to have a healthy diet.

I agree with Richard. If the doc means that one of her biopsy sites was positive for celiac and showed villi damage, she's got it.

gfgypsyqueen Enthusiast
gfgypsyqueen
Posted
  • Author

Actually we did put her back on gluten :blink: She is off to the kinesiologist for recommendations soon. Regular doctors just are not doing it.

The doctor knows that her eating gluten is a limited time frame for him to do testing or prove she is not a celiac. He wants us to visit a dietician.

The illness has cleared up. That is good news. Yes the illness is not related to Celiacs.

Question:

To you experienced Celiacs - does this sound like Celiacs to you?

Child just turned two. Consistently dropped percentages in height and weight from 75th % to 5%.

She cannot tolerate dairy. Had terrible diahrea and mucus in stool from it.

Eats constantly. And still wakes at night from hunger.

She is a very good eater - likes healthy foods.

Has a bloated belly.

Does not have formed stools often.

If not celiacs, then what is wrong?

pugluver31902 Explorer
pugluver31902
Posted

That sounds like Celiac's to me. The way my doctor explained the biopsy samples to me was that he would take multiple samples to make sure he got an affected area. If ANY came back positive, then I had Celiac's. The other samples were just taken from area's that werent affected yet. If I didnt have Celiacs, NONE of the samples would come back positive, as you can't get a positive result from something that isnt there. On the other hand, False negatives are not uncommon. It is more likely to have a false negative then a false positive. So since one sample did come back positive and the doctor is discounting it, I would definitly suggest a second opinion.

Ursa Major Collaborator
Ursa Major
Posted

It looks like your doctor is one of the many doctors who are completely ignorant about celiac disease. I agree with the others. If even just one of the biopsies came back positive for celiac disease, that should give her a firm diagnosis, and she should NEVER have gluten again.

All her symptoms (including not growing) are common celiac disease symptoms. Those symptoms, combined with a positive biopsy, is all that is needed for diagnosing her with celiac disease, no more tests needed.

Please take her back off gluten! You're lucky that she got better despite being fed gluten, from whatever the illness was that she was suffering from. She may have recovered even faster off gluten. Gluten overtaxes her immune system, and is slowly destroying the villi in her small intestine, setting her up for other autoimmune diseases.

She is not absorbing nutrients, that is why she is always hungry. She is probably malnourished, despite eating lots of healthy food, and might even be anemic already. She should be tested for vitamin and mineral deficiencies, and needs a good multivitamin at the very least.

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happygirl Collaborator
happygirl
Posted

If she has any villi damage (i.e., 1 in 7) that is POSITIVE!

Just because she doesn't have total villous atophy doesn't mean she doesn't have Celiac. It means 1. Celiac is patchy and 2. you might have caught it early enough.

You do not need a doctor's prescription to put your child on a gluten free diet. Any other doctor would tell you that your child has Celiac because she has a POSITIVE BIOPSY, which is the gold standard for a Celiac dx. Find a new doctor.

GeoffCJ Enthusiast
GeoffCJ
Posted
You do not need a doctor's prescription to put your child on a gluten free diet. Any other doctor would tell you that your child has Celiac because she has a POSITIVE BIOPSY, which is the gold standard for a Celiac dx. Find a new doctor.

I think she means "any other doctor worth more than the piece of paper they printed his degree on".

I agree completely. That kid should be off gluten. And you should find a new, better doctor. Sadly, many truly are ignorant. I went undiagnosed for years, despite clear Celiac symptoms. I went to the doctors dozens of times, and had just about every test you can imagine. the closest I got to a diagnosis was either "IBS" used as a "we don't really know, but you have gut issues" diagnosis.

I'm pretty sure several docs had diagnosed me with hypochondria too!

I know have a deep distrust of Doctors. it's funny, as patients, we really need them to be infalaible, but they are just people too. I certainly make mistakes at work, so I can't be too angry, but I am.

Geoff

Jestgar Rising Star
Jestgar
Posted
I certainly make mistakes at work,

Unlikely that your mistakes can have quite the same impact on people's lives.

I sometimes get the feeling that some of them are afraid to make mistakes. They state the most obvious diagnosis and if you don't fit with it, well then, there's something wrong with your assessment of your health, not theirs.

I like doctors that question, or say, well, I'm not sure, but we can try this. Or even better: how do you want to deal with this?

Gypsyqueen - I'm sure you're taking care of your baby the very best you possibly can. Good luck.

gfgypsyqueen Enthusiast
gfgypsyqueen
Posted
  • Author

I am expecting a copy of the test results at the next doctor appt along with clarification on exactly what came back positive (gene test or biopsy?) Promethuis labs did the testing, so I expect the results to be accurate. From what I understood of the phone call, the lab is the one stating "unlikely to have Celiacs but results do not exclude it." The doctor confirmed the results of the lab.

My problem is if not celiacs, then what? I am not convinced that she does not have celiacs, I think she has all the symptoms. I think it is a malabsorbption problem of some sort.

We meet with the dietician and the doc soon, so I am expecting plenty of questions answered and probably more questions to ask here.

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