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Learningneverends

Insight on biopsy and protocol

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Hi, my teen son's blood work indicates celiac, after waiting on referral (which they require, not our insurance) over 2 weeks have passed. So naturally l omitted gluten during this time to the best of my ability as l learn where it hides, and yes our son says he feels better.  And yes he has decided to eat out a few days with friends and has suffered the consequences.

The insight l need is regarding the scope/biopsy test.  I agree it is an additional confirmation,  gives a measure in which to compare in the future, BUT  l have a few concerns:

1. The current research  says that blood tests are better and biopsies are not necessary.  My son's # was 2500.  It was not borderline.

2. After playing their referral game  they have done  a huge injustice to patients.  If he could of been scheduled that week, no harm done.  But now they want 2 weeks on gluten to do the scope.  He is a student and does sports.  Feeling ill is not attractive when he is focusing on school.  His labs were in before school started. 

What are some thoughts anyone would like to share on This?

I would add, he has been a T1 diabetic over 10 years.  He is atuned to his body and how it feels, he only can identify stomach symptoms from gluten actually the same week he had blood work done.  The blood work happened to be his yearly labs that were scheduled for T1. 

 

Then my second question: is it advised or absolutely required that l throw out plastic kitchenware?

Is there a link so l can better understand if it's for those who end up in the ER if any trace amounts are ingested? Is it for precaution? I have many questions on this. 

Currently, if he eats gluten he suffers abdominal pain. It is gone after a few hours or next day.  I'd think with a # as high as his,  he'd have an anaphylactic reaction.  Next appt, l hope l can get more questions answered.

Thank you.

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Celaic disease is not an allergy, so you don't suffer an anaphylactic reaction.  Usually, there is no reason to go to the hospital after an accidental glutening.  

Edited by kareng

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1 hour ago, kareng said:

Celaic disease is not an allergy, so you don't suffer an anaphylactic reaction.  Usually, there is no reason to go to the hospital after an accidental glutening.  

We actually met a family who daughter must carry an epi pen.  If she ingests any amount of gluten, it is a fast drive to the ER.  There home is gluten free, no food is allowed to be brought into their home due to cross contamination concerns.  She does not eat anything unless it is prepared by her mother, therefore they never eat out..  She had to be removed from school and they now homeschool.   

 

Edited by Learningneverends

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1 minute ago, Learningneverends said:

We actually met a family who daughter must carry an epi pen.  If she ingests any amount of gluten, it is a fast drive to the ER.  There home is gluten free, no food is allowed to be brought into their home due to cross contamination concerns.  She does not eat anything unless it is prepared by her mother, therefore they never eat out..  She had to be removed from school and they now homeschool.   

 

1 minute ago, Learningneverends said:

 

 

2 minutes ago, Learningneverends said:

We actually met a family who daughter must carry an epi pen.  If she ingests any amount of gluten, it is a fast drive to the ER.  There home is gluten free, no food is allowed to be brought into their home due to cross contamination concerns.  She does not eat anything unless it is prepared by her mother, therefore they never eat out..  She had to be removed from school and they now homeschool.   

 

 

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4 minutes ago, Learningneverends said:

We actually met a family who daughter must carry an epi pen.  If she ingests any amount of gluten, it is a fast drive to the ER.  There home is gluten free, no food is allowed to be brought into their home due to cross contamination concerns.  She does not eat anything unless it is prepared by her mother, therefore they never eat out..  She had to be removed from school and they now homeschool.   

 

I am trying to help you get reliable info from actual medical sources.  Celiac is not an allergy.  THis girl may have an allergy to wheat, but that is different.  And it isn't possible to have Celiac and allergies to other things.   I have Celiac and I seem to have an allergy to corn pollen.  But that allergy is separate from Celiac

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Let's just skip the scientific info-

if your child was anaphylactic to wheat, you must have seeen that by now?  

I know at least 50 people with Celiac, none carry epi pens for gluten. One has a terrible allergy to peanuts, one to shell fish- they have an epi pen for that.  

I don't want you to panic that your child's life is in immediate danger from Celiac.  We really don't have to live in a bubble.

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For many years endoscopy+biopsy was considered the 'gold standard' of celiac diagnosis. That perception has been changing in recent years as multiple studies have shown higher disagreement rates for endoscopic biopsy results than expected between GIs, as more research into early stages of celiac disease have been conducted, and as more information has come in about the efficacy of various blood tests. However, most doctors still currently feel that a positive biopsy is absolutely needed for a clear diagnosis (even though the medical community has been asking if this is indeed true since at least 2010 if not before....). If your question is, should we bother with the endoscopy, I think the answer is (and I am not a medical doctor) you and your son should decide - (in consultation with a doctor you trust, if you are lucky enough to have one).  If you do decide to do the endoscopy, your son should continue to consume gluten everyday until the procedure is completed. The other recognized diagnostic cascade is a four-out-of-five criteria described by Dr. Fasano (a well-respected leading celiac researcher) here (and in other med papers, but I found these interviews really readable:

http://www.tenderfoodie.com/blog/2011/12/22/interview-w-dr-alessio-fasano-part-2-how-to-get-tested-for-c.html

If you feel confident he's meeting that, maybe there is little reason to further imperil his health by eating gluten for the next couple weeks. On the other hand....if it turned out to be something else, you may also want to know, given his diabetes. Some types of diabetes and celiac seem to have a close relationship (both my FIL and my husbands first cousin have confirmed both and there are many links in the med lit.) It seems like he is probably really used to monitoring his diet and paying attention to what he eats, so in some ways the transition to a GFD will be simpler for him than for other newbies.

It is important to recognize that celiac and wheat allergy and two different responses to different components of the grass family that contains wheat. Here are some links that highlight the differences:

https://www.foodallergy.org/common-allergens/wheat

https://www.gluten.org/resources/getting-started/celiac-disease-non-celiac-sensitivity-or-wheat-allergy-what-is-the-difference/

About the plastic -- I think for cutting boards and colanders the consensus is a definite yes. They are just so likely to harbor problems in grooves and cracks. For knife handles there is more disagreement. If you check the celiac: parent of child board there is actually a really good recent thread discussing these issues called 'mom of newly diagnosed five year old'

Good luck to your son -- hope he is feeling better soon!

 

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That family with the daughter, well she has a wheat allergy. She might also have celiac if it was DIA, via blood test. I can see this happening on some rare occasions and getting glutened by barley and rye, with wheat requiring a ebi pen. But this is separate from what your son has. You son has celiac, this is a autoimmune disease where your own immune system attacks your own body. In most cases it is the small intestines where it erodes and destroys the villi in your intestines. For this reason the biopsy confirms it as they can see the damage under a microscope. I also have it where it causes my immune system to attack my nervous system and brain. SO I get a bunch of nerve and mental issues also. It effects everyone a little differently with over 300 symptoms being possible.

Yes plastic is known to retain gluten proteins, same with scratched utensils and pots. Gluten is a protein like blood smaller then a germ. You can not kill it with bleach, a confirmed method for destroying it is 500F in a oven self clean cycle, this can be used to clean up and save your cast iron pots and pans and some utensils. Other wise just play it safe and get new ones. Best to convert the entire house over to gluten free to make it simple Here check out these links for some helpful information.

https://www.celiac.com/gluten-free/topic/91878-newbie-info-101/

 

https://www.celiac.com/gluten-free/topic/117090-gluten-free-food-alternatives-list/

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Thank you , I look forward to reading these links.  This is his 3rd  autoimmune diagnosis.   I  have learned to question and not assume the Dr./office is all-knowing or current with the progress being made in the area of disease and better forms of treatment.   (experience in this area sadly)    I go in knowing I will have to learn and research everything to be his best advocate and not rely that I am being given all the information necessary.   

 I appreciate insight from people actually living it.    Thank you

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