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Doc Probably Calls Me The Crazy Mom
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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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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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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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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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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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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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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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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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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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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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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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    • Mnoosh,    Can you give us a link to the article you read about the increased risk after being diagnosed and maintaining a strict gluten-free diet??       IMO,   You are over reacting to a misprint or most likely a misread article.
    • Yes!  With dairy, celiacs can often have a temorary lactose intolerance due to damaged intestinal villi (where the enzymes normally are released to digest lactose).  Of course you could be naturally lactose intolerant based on race or age.  It is best to stick to a whole foods diet while you are healing.  Really, is ice cream or potato chips going to provide you with nutritional value?  Stick with naturally gluten free foods like meat, fish, fats,  veggies (even those with carbs like sweet potatoes or winter squash) and fruit.  Avoid that processed junk as you may react to the additives right now.  Later, you can add back in dairy (test) and other foods you miss and crave.   Good luck!  
    • Take a deep breath and calm down!    The incidence of cancer with Celiac Disease is rare.......it can happen but the vast majority of people never have that experience.  You may have somewhat enlarged lymph nodes due to inflammation from undiagnosed Celiac but that will all calm down and go away once you get going on the diet.  Believe me, there are many of us that have things happen during the diagnosis and early recovery period and everything turned out just fine.  There is an elevated risk for some cancers with Celiac but that risk goes back to that of the general population after a couple of years on the gluten-free diet. I cannot remember the exact time frame but it is somewhere between 2-4 years, I think.  So many of us went years without a diagnosis and when it was all figured out, we have gone on to be healthy with little complications.  Really...do  not worry about this.  Concentrate on learning all the ins and outs of this disease and how to live gluten free happily.  We are here to help you and guess what? The diet is not as bad as some make it out to be. Many things can be made gluten free and are every bit as good as their gluten counterparts. The diet may not be convenient but it is not hard. I would not lie to you!   
    • Well....one common symptom that most celiacs have when they are diagnosed (or undiagnosed) is anxiety.  So, there is a risk of cancers, but science has demonstrated that that risk goes down on a gluten free diet (if you have celiac disease).  In goes down to the same risk as those without celiac disease.   I kind of was a basket case.  I drive my family a bit crazy because I was anxious.  I felt a bit stupid too.  I guess I had a little brain fog going on too.  All that resolved after I healed. Welcome to the fourum.  Read our Newbie 101 thread under "Coping" (pinned at the top of the page) and learn about hidden sources of gluten and cross contamination.  I think most of us do not worry about cancer. We mourn the freedom to eat anything anywhere!   I did not have swollen lymph nodes, but I am sure others have and they did not have cancer.  Hopefully, they will chime in and set your mind at ease.  If not, you can search for "lymph nodes" at the top of the page (little magnifying glass).  There are lots of members with the same issue!  
    • I was recently diagnosed as having celiac and to be honest the part I'm having the most trouble with isn't the change in food or lifestyle. I'm really upset about what I've read about the risk of cancer increasing with celiac disease. I think this is playing into my fears because I currently have lymph nodes all over my body-my Doctor says they are not considered swollen or concerning, but I don't usually feel nodes. The lymph nodes and horrible diarrhea for the last 3 weeks were what got me into the the doctor for lab work. My blood work came great so I'm wondering if anyone else experienced lymph nodes reacting when they found out they were celiac? Also how do you deal with anxiety surrounding the increased risk of cancer? Thanks!
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