Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Doc Probably Calls Me The Crazy Mom
0

11 posts in this topic

My son had a scope/biopsies today and I just read something about using a die to better project the villi in the lab to get an accurate count. Is this familiar to anyone and do you think I can call on Monday and request the die or do you think that puts me on crazy-mom status and it's too late? My son has been off wheat/gluten for weeks now (except for xanthan gum, which he reacts to, in his toothpaste, which he tries his best to swallow ;-)) Anyway, my gut is celiac but from everything I've read about diagnosing in kids, it's really hard once their bodies start to repair. Unfortunatelyl for me, my gut instinct no matter how obviously backed by food elimination diet isn't good enough for some of my family members that my son comes in contact with (That's a whole other convo!) --I'm sure we all feel like a clear answer would make things much more simple!

0

Share this post


Link to post
Share on other sites


Ads by Google:

I'm not sure about the dye but unfortunately, in order for the biopsies to be accurate, your son would have had to be eating gluten for weeks before the test. :(

0

Share this post


Link to post
Share on other sites

My son has been off wheat/gluten for weeks now (except for xanthan gum, which he reacts to, in his toothpaste, which he tries his best to swallow ;-))

Some people react to xanthan gum, but it is gluten-free.

0

Share this post


Link to post
Share on other sites

I'm not sure about the dye but unfortunately, in order for the biopsies to be accurate, your son would have had to be eating gluten for weeks before the test. :(

I know--the GI didn't want me to put him back on a wheat diet. I probably have a false hope that they could still see some of the damage leftover. They are checking a couple other things w his scope (enzymes and signs of reflux) but my guess is that those will check out fine and then we will have to talk about doing another endoscopy paired with a long food challenge. I'm grasping at anything to try to avoid that.

Some people react to xanthan gum, but it is gluten-free.

I keep reading different info on it. I see that it's gluten free (lots of resources on this website) yet have found others saying its cross contaminated at some point. Since my son reacts to it, I had just assumed the latter...... Wonder what else in xanthan gum could be causing him trouble? Any idea why many people with celiac disease or gluten sensitivity react to it? Thanks!

0

Share this post


Link to post
Share on other sites

If I understand the OP question, the dye that is used is added AFTER the biopsy specimen has arrived at the lab for processing. Dyes are commonly used to make the variations in the tissue easier to see and as part of the testing process. The patient is not exposed to those dyes. They are just a part of the tissue examination process. (I am a medical transcriptionist who types up the reports from these procedures.)

0

Share this post


Link to post
Share on other sites




Some people react to corn and the are sometimes concerned about zanthan gum because it is cultured on corn. So it is corn cc that is the concern there.

0

Share this post


Link to post
Share on other sites

I would suggest you do two things. A: Remember that caring for your children, and discussiong their medical needs in regards to the latest research is NOT crazy. B: Quit letting your family members opinion interfere with how you care for your children. Chances are you are doing an awesome job, esp, if you are reading about biopsy dyes, etc. I have a ton of family that seems to disagree with what I talk about regarding my kids health. My Mom told me that my youngest daughter didn't have Asthma, and then cried a few months later when she watched my DD have an attack and realized she was very wrong. Nobody is with your kids as much as you are. If it helps your child, then keep it up, regardless of what the biopsy results say, esp given the feedback above about consuming gluten before the biopsy.

0

Share this post


Link to post
Share on other sites

Some people react to corn and the are sometimes concerned about zanthan gum because it is cultured on corn. So it is corn cc that is the concern there.

Thank you!! I thougth it was wheat so great to know it's corn (which is also already out of our diets b/c my boys were reacting to whole corn, syrup, etc.) Didn't realize it was part of that family! Thanks!

0

Share this post


Link to post
Share on other sites

I would suggest you do two things. A: Remember that caring for your children, and discussiong their medical needs in regards to the latest research is NOT crazy. B: Quit letting your family members opinion interfere with how you care for your children. Chances are you are doing an awesome job, esp, if you are reading about biopsy dyes, etc. I have a ton of family that seems to disagree with what I talk about regarding my kids health. My Mom told me that my youngest daughter didn't have Asthma, and then cried a few months later when she watched my DD have an attack and realized she was very wrong. Nobody is with your kids as much as you are. If it helps your child, then keep it up, regardless of what the biopsy results say, esp given the feedback above about consuming gluten before the biopsy.

Thank you SO much! Seriously brought tears to my eyes; I probably shouldn't need your pep talk but I totally did. Thank you!

0

Share this post


Link to post
Share on other sites

If I understand the OP question, the dye that is used is added AFTER the biopsy specimen has arrived at the lab for processing. Dyes are commonly used to make the variations in the tissue easier to see and as part of the testing process. The patient is not exposed to those dyes. They are just a part of the tissue examination process. (I am a medical transcriptionist who types up the reports from these procedures.)

Thanks Miss Mellie! Yes, I read the dyes were used to analyze the biopsy too. Sorry I wasn't clear on that. So, do you think I could call and request that they use the dye? I guess it never hurts to ask.

0

Share this post


Link to post
Share on other sites

Thanks Miss Mellie! Yes, I read the dyes were used to analyze the biopsy too. Sorry I wasn't clear on that. So, do you think I could call and request that they use the dye? I guess it never hurts to ask.

You won't need to ask them to use it. It is standard procedure to use dye in the examination process. :-)

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,636
    • Total Posts
      921,533
  • Topics

  • Posts

    • Did your doctor check for SIBO, H. pylori, ulcers, etc. when he was obtaining biopsies to check for celiac disease?  
    • Oh, and as I mentioned in my own post on pain, xanax. I swear. I tried it just to deal with the occasional panic I had at weird scary symptoms and clueless doctors. I am not a fan of long term use. But I recently found that .25 mg seems to aid with the neuropathic pain. It does not go away, but it helps. 
    • It does sound like a Glutening and you are just a few months into the diet.  It might help if you read our Newbie 101 thread under the "Coping" section.   Here is some information about rice milk: https://www.verywell.com/is-rice-dream-gluten-free-562354 Many, many celiacs are often lactose intolerant temorarily or permanently if you are naturally genetically inclined.  When I am glutened, I lose the ability to digest lactose for a while.   Salad?  Great but it can be rough on a sore gut!  Think soups, stews, easy-to-digest foods that you prepare yourself until you feel better.  Did your folks give you salad after a bout of flu?  Or did you stick with jello and broth?  I am intolerant still after three years to garlic and onions (the lactose resolved, thankfully).  You have a leaky gut (Google zonulin and Dr. Fasano who is a leading celiac researcher to verify that this is true) and that means you can become intolerant to anything (hopefully, just temporarily).   If you are 100% sure that you have had no access to gluten....did you eat out lately?.....then see your doctor.  Remember, celiac disease symptoms can change.  And here is the biggie.....it can take weeks, months or years to heal from celiac disease.  Two months in is nothing, really.  Why?  It takes time to figure out the diet and time for antibodies to come down.  celiac disease is an autoimmune disorder triggerEd by gluten.  once triggered it can go on and on damaging your gut especially with repeated glutenings (accidental or through cross contamination). I hope you feel better soon!  
    • I concur! I literally feel your pain as well. Like, at the moment, lol. Did you have an endo to see inflammation or damage? I am close to begging my GI for carafate or something to coat and protect. How about testing your antibodies to see if they are still rising? I read somewhere here rice milk may not be a good option.  Folks here have also suggested to me to stick with whole foods. Limit processed. Especially stuff that is not certified gluten-free, like chex. I think small amounts of gluten are in processed foids and can add up. I too reacted to lettuce the other day like I was ingesting glass. My sibling  had a food sensitivity panel done and it came back positive for a few things he had been eating a lot of. He can now eat them, but had to cut them out of his diet. Lettuce is probably on mine.  I have been drinking carrot and pomegranate juice,  dandelion root tea with hiney, aloe water, lots of squash, fish. Mild, no garlic, no onions or hot sauce. No coffee. It sucks.  Inflammation can tick off other organs, you mention a "Pain below". Not exactly sure which side, but certainly call your doc Monday. Sooner if the pain increases.
    • You should see a GI specialist before you go gluten free.  They should do a upper endoscopy to check for celiac damage.  Colonoscopy won't show anything related to celiac.  Also no you should not feel worse on gluten free, you should feel better.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,639
    • Most Online
      3,093

    Newest Member
    NickyW_UK
    Joined