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Doc Probably Calls Me The Crazy Mom


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10 replies to this topic

#1 Boys mom

 
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Posted 31 August 2012 - 07:24 PM

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!
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#2 abby03

 
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Posted 01 September 2012 - 04:37 AM

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. :(
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#3 psawyer

 
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Posted 01 September 2012 - 05:06 AM

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.
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Peter
Diagnosis by biopsy of practically non-existent villi; gluten-free since July 2000.
Type 1 (autoimmune) diabetes diagnosed in March 1986
Markham, Ontario (borders on Toronto)

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#4 Boys mom

 
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Posted 01 September 2012 - 06:16 PM

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!
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#5 missmellie

 
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Posted 02 September 2012 - 05:48 AM

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.)
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Miss Mellie

Aug. 2010 IgA+ Gliadin; IgA+ Casein; IgA+ Egg; IgA+ Soy.
Sept. 2010 IgG+ for cow's milk, peach, yeast, chili pepper, egg white & yolk, lentil, soy, cola nut, coriander/cumin/dill, nutmeg/peppercorn, sesame seed, turkey, and wheat


Hypothyroidism, arthritis, GERD, overweight, chronic sleeping issues

#6 GFinDC

 
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Posted 02 September 2012 - 07:19 AM

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.
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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#7 Nyobi's Mom

 
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Posted 04 September 2012 - 08:41 AM

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.
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#8 Boys mom

 
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Posted 04 September 2012 - 04:23 PM

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!
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#9 Boys mom

 
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Posted 04 September 2012 - 04:26 PM

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!
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#10 Boys mom

 
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Posted 04 September 2012 - 04:27 PM

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.
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#11 missmellie

 
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Posted 06 September 2012 - 05:19 AM

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. :-)
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Miss Mellie

Aug. 2010 IgA+ Gliadin; IgA+ Casein; IgA+ Egg; IgA+ Soy.
Sept. 2010 IgG+ for cow's milk, peach, yeast, chili pepper, egg white & yolk, lentil, soy, cola nut, coriander/cumin/dill, nutmeg/peppercorn, sesame seed, turkey, and wheat


Hypothyroidism, arthritis, GERD, overweight, chronic sleeping issues




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