Celiac.com Sponsor (A1):



Celiac.com Sponsor (A1):


Archived

This topic is now archived and is closed to further replies.

CoeliacinSydney

Advice Re Biopsy Please!

Recommended Posts

I'd love some advice here. My youngest son age 10 started becoming symptomatic around Christmas time. I immediately took him for blood tests because my eldest son has been Celiac for four years. Of course his blood were positive.

He went gluten-free straight away and has been so for approximately a month (since the results). He is also having some issues with lactose (although not intolerant) but we are trying to cut back on that until he has healed. His symptoms are improving although he is still getting stomach cramps, but not as many. So my GP has recommended we see a Gastroenterologist for advice. The Gastro has sent me an appointment letter for mid May, saying that he must go off the gluten-free diet TODAY before the appointment and has scheduled a biopsy for the same week. Given that the biopsy for my elder son just confirmed what we already knew (his symptoms were not as bad as what we are going through now with my younger child) and she literally walked out from the theatre and said "yes he has it" and then we were pretty much on our own, I am incredibly reluctant to put him on gluten again.

Has anyone else had a similar dilemma when it comes to biospy? Sooooo frustrating! Why would I want to put him through 2.5 months of hell to get a diagnosis that we already know given it is genetic and his brother has it??? Should I try to find another Gastro who can see us sooner or am I wasting our time and money?

Thanks!

Share this post


Link to post
Share on other sites

Join eNewsletter


Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8):


Personally I would not put him through over two months of poisoning to have the doctor tell you what you already know. Plus if he has been gluten-free for a month already he could become seriously ill during the challenge. I would ask your ped why he thinks this is needed when you already have one diagnosed child and your son's blood work is positive.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

Share this post


Link to post
Share on other sites

Join eNewsletter

This is sheer ignorance on the part of that doctor! Celiac expert Dr. Alessio Fasano has stated vehemently that a biopsy is no longer considered the "gold standard" for diagnosing celiac. As a parent, you need to stand up to this ignorance--your child needs to be protected in this instance. Good luck!

Share this post


Link to post
Share on other sites

Join eNewsletter

I agree with the pp's. The biopsy in your son's case is not necessary, and will only cause him needless suffering. I would eliminate the lactose for your son altogether until he is at least six months gluten free and that may well take care of his stomach cramping. Almond milk, while more expensive, is delicious, and you can give him sherbet instead of ice cream until he is healed. You can also use rice milk although some people have problems with Rice Dream due to their filtration process with barley. But I have used both rice and almond milks (and hemp although I am not sure if it is available in OZ - it is not in NZ) for baking. Also coconut milk is a possibility. I actually gave up lactose before I gave up gluten (not knowing about gluten :rolleyes: ) and it made a big difference. I was, however, able to eat cheese and yogurt since most of the lactose is digested by enzymes and cultures in these prodoucts. The fact that he is lactose intolerant is a pretty good indicator that his biopsy would be positive.

If he is improving on the gluten-free diet (especially with the removal of lactose), you may be able to get a celiac diagnosis from the GI without the biopsy. Best wishes for you and your son.


Neroli

"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973

Lactose free 1990

(Mis)diagnosed IBS, fibromyalgia '80's and '90's

Diagnosed psoriatic arthritis 2004

Self-diagnosed gluten intolerant, gluten-free Nov. 2007

Soy free March 2008

Nightshade free Feb 2009

Citric acid free June 2009

Potato starch free July 2009

(Totally) corn free Nov. 2009

Legume free March 2010

Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

Share this post


Link to post
Share on other sites

Join eNewsletter

It was my understanding from your initial post that his blood tests were positive - perhaps I misunderstood. I believe you said he had been gluten free "since the results". At any rate, I am glad he is doing better. I personally do not recommend soy milk for any gluten intolerants as so many of us have problems with soy as well as gluten. There are many delicious milks like rice, almond, hemp, coconut.......


Neroli

"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973

Lactose free 1990

(Mis)diagnosed IBS, fibromyalgia '80's and '90's

Diagnosed psoriatic arthritis 2004

Self-diagnosed gluten intolerant, gluten-free Nov. 2007

Soy free March 2008

Nightshade free Feb 2009

Citric acid free June 2009

Potato starch free July 2009

(Totally) corn free Nov. 2009

Legume free March 2010

Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

Share this post


Link to post
Share on other sites

Join eNewsletter



Join eNewsletter