Negative Biopsy?

[Ottonegirl]

My 12 yo daughter has struggled with horrible anemia for the past 1 1/2 years. When it first started the hematologist swore that it wasn't iron deficiency. She was so skinny, gassy, tired, etc. that I investigated things & pulled her off gluten. Immediately, the gassiness subsided, but her anemia didn't improve. After 2 months, the hematologist realized that she had iron deficiency & she was put on iron (it took about a year on iron to get her results normalized). We were then sent to a gastroenterologist. Her dr did an upper & lower endoscopy after 5 weeks back on gluten. Her test results all came back normal - biopsies & all. So, she's been eating gluten ever since. Then after a few months her iron levels dropped again (while taking iron) so she had a camera endoscopy - it showed an abnormal section of her small intestine. But, it could never be replicated on CT scan so she's been on iron. She finally stabilized so now she's being watched for 3 months w/o supplementation to make sure she doesn't bottom out again.

All that to say, I'm not convinced that she couldn't have celiac. Her permanent teeth have all come in much darker than her baby teeth for example. (a weird sypmtom I've seen associated with celiac) & she's back to having horrible gas again. She has grown & gained weight finally (over the past year), but she's still super skinny (actually she's lost weight since last July). Could the biopsy be wrong? She was only on gluten for 5 weeks when we did the biopsy?

I'd love any thoughts. Her gastroenterologist has never done the blood tests because her biopsy came back negative. Curious what you all think.

Thanks!

[hez]

IMHO biopsy could come back negative. The endoscopy might have not gone where the damage was. Was she eating alot of gulten for five weeks? I am not sure how much or for how long you need to be on gluten to get damage to show up. At this point it sounds like the docs don't think she has it so it is up to you. If you think she has it keep her gluten-free. Lots of people on this board have done just that. Good luck.

Hez

PS-Welcome to the board!

[Ursa Major]

It will take about six months to a year of eating a lot of gluten to even have a remote chance of a positive biopsy. After only five weeks on gluten, it is pretty much impossible to get a positive biopsy. Also, without a doubt, if she would have had blood tests, they'd have come back negative as well. Both the biopsies and blood tests are meaningless if you haven't been consistently consuming gluten for about a year (and with some people it would even take longer).

Trying the gluten-free diet is a valid test for celiac disease. You daughter improved dramatically being gluten-free. That proves she is at least gluten intolerant. Anemia is one of the most common symptoms of celiac disease. Plus, she has all the classic gastro symptoms.

I have no doubt your daughter should be off gluten completely, or she will get really sick. You have clueless doctors, and you need to stop listening to them, for your daughter's sake.

[Ottonegirl]

She's been back on gluten for a year now... her allergist pulled her off rice & corn because he thought she was allergic to them (from a patch test) so she's only been consuming wheat. Almost immediately she started having headaches, more gas & hives everytime she takes a shower. Would this be enough time to get postivie results from Enterolab? I'd like a postive result just so she knows & doesn't want to cheat. KWIM?

Thanks again!

  Ursula said:

It will take about six months to a year of eating a lot of gluten to even have a remote chance of a positive biopsy. After only five weeks on gluten, it is pretty much impossible to get a positive biopsy. Also, without a doubt, if she would have had blood tests, they'd have come back negative as well. Both the biopsies and blood tests are meaningless if you haven't been consistently consuming gluten for about a year (and with some people it would even take longer).

Trying the gluten-free diet is a valid test for celiac disease. You daughter improved dramatically being gluten-free. That proves she is at least gluten intolerant. Anemia is one of the most common symptoms of celiac disease. Plus, she has all the classic gastro symptoms.

I have no doubt your daughter should be off gluten completely, or she will get really sick. You have clueless doctors, and you need to stop listening to them, for your daughter's sake.

[Michi8]

Her symptoms definitely sound like celiac to me.

  Ottonegirl said:

Her permanent teeth have all come in much darker than her baby teeth for example. (a weird sypmtom I've seen associated with celiac)

It's possible for the discolouration to be from fluorosis. Is your tap water fluoridated?

Michelle

[Ottonegirl]

  Michi8 said:

Her symptoms definitely sound like celiac to me.

It's possible for the discolouration to be from fluorosis. Is your tap water fluoridated?

Michelle

It is now, but we lived with well water when the bulk of her permanent teeth came in. So, it seems to be something with her.

thanks

[par18]

  Ottonegirl said:

My 12 yo daughter has struggled with horrible anemia for the past 1 1/2 years. When it first started the hematologist swore that it wasn't iron deficiency. She was so skinny, gassy, tired, etc. that I investigated things & pulled her off gluten. Immediately, the gassiness subsided, but her anemia didn't improve. After 2 months, the hematologist realized that she had iron deficiency & she was put on iron (it took about a year on iron to get her results normalized). We were then sent to a gastroenterologist. Her dr did an upper & lower endoscopy after 5 weeks back on gluten. Her test results all came back normal - biopsies & all. So, she's been eating gluten ever since. Then after a few months her iron levels dropped again (while taking iron) so she had a camera endoscopy - it showed an abnormal section of her small intestine. But, it could never be replicated on CT scan so she's been on iron. She finally stabilized so now she's being watched for 3 months w/o supplementation to make sure she doesn't bottom out again.

All that to say, I'm not convinced that she couldn't have celiac. Her permanent teeth have all come in much darker than her baby teeth for example. (a weird sypmtom I've seen associated with celiac) & she's back to having horrible gas again. She has grown & gained weight finally (over the past year), but she's still super skinny (actually she's lost weight since last July). Could the biopsy be wrong? She was only on gluten for 5 weeks when we did the biopsy?

I'd love any thoughts. Her gastroenterologist has never done the blood tests because her biopsy came back negative. Curious what you all think.

Thanks!

I think I would test her for the gene first. Then if that were positive you could go back to the diet or try the anti-body tests. The biopsy or the anti-body tests can be hit or miss. What the anti-body test can do is give you a reference point prior to restarting the gluten-free diet or a gluten challange diet.

Tom

[Suzie-GFfamily]

  Ottonegirl said:

She's been back on gluten for a year now... her allergist pulled her off rice & corn because he thought she was allergic to them (from a patch test) so she's only been consuming wheat. Almost immediately she started having headaches, more gas & hives everytime she takes a shower. Would this be enough time to get postivie results from Enterolab? I'd like a postive result just so she knows & doesn't want to cheat. KWIM?

Thanks again!

Since she has been eating gluten for a year there should be pos results from diagnostic tests that are done now. The best test(s) would be whatever you think is going to be most convincing for your daughter. If she doesn't believe the test- it's not going to be as valuable.

Does she rely on the advice given by her physicians? If so, than maybe you should push for a standard diagnostic test for celiac disease- either a biopsy or start with a blood screen (eg tTG + total serum IgA). You have more than enough evidence to make a good case for celiac- you just need to convince the dr's that celiac is a very likely explanation for your daughter's health problems.

Why don't you write out a list of your daughter's symptoms that fit with celiac disease (and it sounds like she has a lot of symptoms)- and say "I believe that my daughter has celiac disease. If you don't believe me, than test her and prove me wrong."

If you feel that she would be convinced by a pos result from a non-conventional test- than go the Enterolab route. If it is pos- you can either help her begin her gluter-free life and forego any other testing, or bring the results to her dr. and use it as additional evidence to back-up your suspicions.

If your daughter has celiac disease, than you need to help her get diagnosed so she can accept that she needs to treat her condition, ie follow a strict gluten-free diet.

Good luck