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3 Year Old- Wait For 2Nd Biopsy Or Stop Gluten?


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6 replies to this topic

#1 CaveMum

 
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Posted 12 October 2012 - 12:38 AM

We live in New Zealand. We have a family history auto-immune disorders, with one diagnosed celiac (my sister).

My 3 year old son has had classical symptoms of celiac disease (bloating, diarrhoea, tummy pain, irritable, lethargic) since Feb this year. He was eventually blood tested in June and came back with positive antibodies, which were very high. He had his biopsy on August 31st and on 10th September we were told the result was "inconclusive" - no flattening of villi but some cellular changes. In the meantime we had taken him off gluten and he improved rapidly during that 10 day period. The specialist has recommended that we re-introduce gluten so that he could undergo another biopsy, which is scheduled for no less than 3 months time, since we had taken him off gluten (for 10 days!!).

Has been back on gluten now for a month and has big bloated tummy, twice daily diarrhoea, constantly complaining of needing to eat, seems to always be in tears. He is pretty miserable. The second biopsy will not be until late January and I am starting to wonder if we may just forego it, and assume he is gluten intolerant on the basis of the blood test. Another three and half months of gluten seems like torture.

Is there any point to repeating the biopsy in view of his symptoms and positive blood test?
What if it also comes back negative?
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DS 1: TTG 262, DGP 170 in June 2012. Eventually diagnosed coeliac by biopsy Dec 2012 (aged 3 yrs 9 months).

Heart breaking that we kept him on gluten all that time. If I had to do it again, I would not agree to continue feeding him gluten for 6 months just so that the "gold standard" for diagnosis could be met.

DS 2: HLA - DQ8 gene. 

Gluten free, as I am not willing to risk his health by allowing him to become coeliac.  


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#2 tom

 
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Posted 12 October 2012 - 01:21 PM

Hi CaveMum,
What a tough situation.
I was just looking for one of the articles/studies I've read where the topic is basically "we should start giving celiac disease dx by blood test only", but failed to find it/them.
As I remember it, they make the case w/out even involving the usual endoscopy/biopsy issues of all-too-common insufficient # of samples and potential spotty nature of the damage.

So despite not yet finding something to link to, I'll offer that I'd personally lean towards believing the "very high" positive antibodies, along w/ your clearcut observational data contrasting on/off gluten. ("Rapid" improvement even! Yay!) Some of the more progressive Drs would've already dx'd him celiac.

Best of luck to you & your boy. :)
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>>>>>>> tom <<<<<<<

Celiac 1st diagnosed as a toddler, in the 60s. Docs then, between bloodletting & leech-tending, said "he'll grow out of it" & I was back on gluten & mostly fine for 30yrs.

Gluten-free since 12-03
Dairy-free since 10-04
Soy-free since 5-07

#3 Celiac Mindwarp

 
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Posted 12 October 2012 - 01:27 PM

When I went back to my doctor with my list of symptoms 3 weeks into a gluten challenge she told me to stop. I am now struggling to get a diagnosis, but then I had a negative blood test.

I am not saying to stop, but it might be worth talking it through with your doctor. 3 months seems a long time to wait.

Good luck
  • 0
- Symptoms from 2001, maybe before. Across 20+ years, these have included, vomiting, D, migraines, headaches, recurrent miscarriage, inflammation problems (failure to heal from injuries) brain fog, anxiety and more!
- Elimination diet using Atkins, 2003 – excluded wheat, caffeine, quorn. 2005, excluded sesame, alcohol
- Started diagnosis route April 2012, blood tests, endoscopy – said negative, gluten challenge, clearly something very wrong, had to stop after 3 weeks.
- Gluten Free, August 2012, Corn Free, September 2012. Removed most processed gluten free foods.
- Genetic testing, December 2012 – negative – Diagnosis – Non Celiac Gluten Intolerance (NCGI)
- Elimination diet, January 2013 – all of the above plus dairy, legumes, all grains, sugar, additives, white potatoes, soy. Reintroducing sloooowly now. Health improving.
It's not that I'm so smart, it's just that I stay with problems longer. ~Albert Einstein Posted Image

#4 GottaSki

 
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Posted 12 October 2012 - 02:24 PM

Welcome!

My first thought is - even if your son eats gluten for the next three months it does not guarantee a positive biopsy.

The evidence you already have should be enough to diagnose:

Symptoms - bloating, diarrhoea, tummy pain, irritable, lethargic
Positive Antibodies - do you know which tests were positive?
Biopsy - Inconclusive, BUT cellular changes noted
Diet - Symptom improvement off gluten / Symptoms returned on gluten

I don't see an upside to continuing another day on a challenge that is clearly harmful to your son. Have you told the doctor how tough the challenge has been? Perhaps they will diagnose once they have the added information of the dietary response. If the doctor continues to push for another endo, I'd look for another doctor. It would then be a clear case of the doctor sticking to outdated protocols as there are doctors that will diagnose based on the items you have listed.

I'd suggest getting written or electronic copies of all your son's blood work and endoscopy report. It helps to know which celiac tests were completed and the endo report can provide important information that is not always clear when the doctor verbalizes their findings.

Good luck to your family along with wishes for continued healing for your son :)
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#5 CaveMum

 
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Posted 12 October 2012 - 03:31 PM

Hi all, thanks for your replies. The specialist told us that he was their "one-child-a-year" who has positive blood test, but nothing conclusive on biopsy. I don't think that there were any faults with the technical aspects of the biopsy; there were 10 samples taken altogether and the scope went as far as the 3rd part of the duodenum.


"My first thought is - even if your son eats gluten for the next three months it does not guarantee a positive biopsy."
That idea has crossed my mind. Which then leads to the question of what we would do if that happened. Most likely we'd refuse a 3rd biopsy and take him off gluten. Seems then that the only justification for a 2nd biopsy is to achieve the "gold standard" for diagnosis.

"Positive Antibodies - do you know which tests were positive?"
Yes - tTG was 262 and DGP was 170. I understand that these are quite specific markers for Coeliac?

"Have you told the doctor how tough the challenge has been? Perhaps they will diagnose once they have the added information of the dietary response. If the doctor continues to push for another endo, I'd look for another doctor. It would then be a clear case of the doctor sticking to outdated protocols as there are doctors that will diagnose based on the items you have listed."

We met with the gastroenterologist last Monday, so 5 weeks after initial biopsy, 4 weeks after his 10 days off gluten. We did explain that his symptoms improved quickly off gluten and that they are back with gluten. I am going to see whether we can get a second opinion, as it does seem like the specialist is focussing on the gold standard of biopsy, rather than what is in the patient's best interests.
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DS 1: TTG 262, DGP 170 in June 2012. Eventually diagnosed coeliac by biopsy Dec 2012 (aged 3 yrs 9 months).

Heart breaking that we kept him on gluten all that time. If I had to do it again, I would not agree to continue feeding him gluten for 6 months just so that the "gold standard" for diagnosis could be met.

DS 2: HLA - DQ8 gene. 

Gluten free, as I am not willing to risk his health by allowing him to become coeliac.  


#6 GottaSki

 
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Posted 12 October 2012 - 05:08 PM

Yes - tTG was 262 and DGP was 170. I understand that these are quite specific markers for Coeliac?

That is correct.
-tTG (tissue transglutaminase)is the most common screening test for Celiac Disease.
-DGP (deamidated gliadin peptides) is used to measure the antibodies that are created in direct response to peptides found in one of the proteins of gluten.

Two high positive results indicates Celiac. Add to them the positive response to diet and cellular changes mentioned in biopsy and it paints a clear picture. It is not uncommon to have a doctor that is not familiar with Celiac - if there is a Coeliac Support Group in your area, they can often direct you to a gastroenterologist that specializes in Celiac Disease should you decide you'd like a second opinion.

One other note - Celiac is genetic. You, along with CaveDad and any siblings should be tested as well. It is recommended that family members be tested every 3-5 years - more frequently should symptoms arise.

Take care!
  • 0

-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#7 nvsmom

 
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Posted 12 October 2012 - 08:15 PM

Your poor little guy. :( Everyone has given you good advice, but I just wanted to add that I was diagnosed on symptoms and a high ttg IgA and EMA alone. No biopsy needed. I responded well to the gluten-free diet so I consider it case closed. I would be partial to skipping your son's biopsy and going gluten-free unless you need that official diagnosis for something now or in the future; three months is a long time to feel poorly unless there is a great need of it. :(

Best wishes to you and your family.
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