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Should I Be Scoped Again After 1 Year gluten-free?


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9 replies to this topic

#1 BabsV

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Posted 18 April 2012 - 06:38 AM

So, just trying to figure out follow-up tests, etc. I've been gluten-free for 8 months now...we'll be moving back to the States in 2 more months and I'm trying to sort out new doctors (who might actually have some knowledge about Celiac!) and schedule appointments if at all possible.

Did anyone have another biopsy after 1 year gluten-free? Is that standard?

One of my docs is saying I should...another is saying to only do blood work. My 6 month blood work showed a marked drop in antibodies and lots of my symptoms have resolved but I'm still dealing with terrible abdominal pain issues at times. I'm thinking another food intolerance and trying to figure it out -- when I mentioned it the doctors here (in Poland) looked at me like I was crazy and repeated the Polish Celiac mantra (as I call it): "You can't drink beer but you can still eat potatoes. The pain is from the Celiac. You just have to live with it."

On a positive note I've been in touch with the Univ of MD Center for Celiac Research since it's only about an hour from where I'll be living and they were great. I'm in the process of scheduling an appointment; I figure Dr. Fasano and his team should be able to come up with some ideas if anyone can!
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#2 Christine0125

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Posted 18 April 2012 - 07:59 AM

On a positive note I've been in touch with the Univ of MD Center for Celiac Research since it's only about an hour from where I'll be living and they were great. I'm in the process of scheduling an appointment; I figure Dr. Fasano and his team should be able to come up with some ideas if anyone can!

I'll be very interested to hear how the appt goes with U of M. I live about an hour from there and my husband works for the hospital. I had considered making an appt there but decided to see a local doctor and go there in the future if needed. My family is also participating in the Center for Celiac Research Run/Walk 5K on May 20th!
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#3 ravenwoodglass

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Posted 18 April 2012 - 12:30 PM

You might want to make the appointment and do make sure to bring your records from your current doctors with you. Talk to the doctor about whether there is a need to rebiopsy when you get there. Since you are still having problems they may want to retest and biopsy to make sure you still haven't got gluten sneaking in or whether you may also have something else going on.
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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)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
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 with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity 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)

#4 CeliacAndCfsCrusader

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Posted 20 April 2012 - 07:24 PM

My doc's basically told me that a scope isn't necessary after the initial one, as long as I don't cheat and my blood work comes back negative.

Even thought I didn't mind the actual procedure, their feeling is that ANY surgical procedure should be "necessary".

That being said, I think it's ultimately up to us whether our bodies are telling us something. Good luck.
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#5 BabsV

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Posted 21 April 2012 - 01:40 AM

Thanks for the input. The doctors I'm around right now are really really keen on tests -- I'm tired of schlepping to get blood drawn and getting ultrasounds not to mention I don't want to have any unnecessary procedures!
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#6 plumbago

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Posted 21 April 2012 - 02:09 AM

Dr Fasano will tell you that the best way to tell is to get the endoscopy.

I often ask myself the same question. I'm just reluctant to get another endoscopy. I have relied on blood tests, keeping an eye out especially for vitamin absorption (which is better but still on the low end of the range).
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#7 lovegrov

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Posted 23 April 2012 - 07:55 AM

WARNING: I am NOT a doctor or medical person!!

If you feel good and your blood tests are good, I just don't see the need for another biopsy. There are some dangers involved in sticking stuff own your throat and into your small bowel, although overall it's a relatively safe procure. The second time they did my dad, they accidentally tore his esophagus(??). He ended up fine, but it certainly wasn't any fun.

I've never had another one after being diagnosed and I don't plan to unless there's something strange going on.

richard
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#8 bennl1

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Posted 07 May 2012 - 08:51 AM

Besides bloodtests, nowadays there are also stool tests available. If they all come up negative and there are no obvious symptoms, I sure wouldn't let that tube inside me again. I found it to be a rather traumatic experience.
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Ben (58)

Diagnosed Celiac 12-Apr-2012
Dairy intolerant, B12 malabsorption, Bile acid malabsorption.
Osteopania
Lifetime of misdiagnoses.

2008-2011 Lived in Thailand, almost symptom free.
Now only eat Thai food.
Easy to cook - gluten/dairy free - delicious

#9 irish daveyboy

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Posted 07 May 2012 - 03:38 PM

Not sure how old you are, I've had serveral follow up procedures.

1st one after 12 months gluten-free showed villi were nearly fully healed (I stuck rigidly to a Gluten Free Diet and only used foods recommended at less than 20PPM by the Irish Coeliac Society).

They did however find a large polyp (Adenoma) in my lower bowel people over 50 are more susceptible to polyps than those under 50.

I was advised that they can, if left untreated become maglignant.

I had another Colonoscopy recently and had another 2 smaller polyps removed, it was recommended by the hospital that I have a follow up colonoscopy every 2 years.
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Chronically Ill and lost 56lbs in 3 Months Prior to Diagnosis.
Diagnosed in Nov 2005 after Biopsy and Blood Tests
Cannot tolerate Codex Wheat Starch.
Self Taught Baker.
Bake everything from scratch using naturally gluten-free ingredients.

#10 bennl1

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Posted 07 May 2012 - 07:40 PM

Not sure how old you are, I've had serveral follow up procedures.

1st one after 12 months gluten-free showed villi were nearly fully healed (I stuck rigidly to a Gluten Free Diet and only used foods recommended at less than 20PPM by the Irish Coeliac Society).

They did however find a large polyp (Adenoma) in my lower bowel people over 50 are more susceptible to polyps than those under 50.

I was advised that they can, if left untreated become maglignant.

I had another Colonoscopy recently and had another 2 smaller polyps removed, it was recommended by the hospital that I have a follow up colonoscopy every 2 years.


I'm 58
It's not the Colonoscopy I found traumatic. I referred to the scope to check the villi.
Ben
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Ben (58)

Diagnosed Celiac 12-Apr-2012
Dairy intolerant, B12 malabsorption, Bile acid malabsorption.
Osteopania
Lifetime of misdiagnoses.

2008-2011 Lived in Thailand, almost symptom free.
Now only eat Thai food.
Easy to cook - gluten/dairy free - delicious


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