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

BabsV

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BabsV Enthusiast
BabsV
Posted

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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Christine0125 Contributor
Christine0125
Posted

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!

ravenwoodglass Mentor
ravenwoodglass
Posted

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.

CeliacAndCfsCrusader Apprentice
CeliacAndCfsCrusader
Posted

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.

BabsV Enthusiast
BabsV
Posted
  • Author

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!

plumbago Experienced
plumbago
Posted

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).

lovegrov Collaborator
lovegrov
Posted

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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  • 2 weeks later...
benXX Rookie
benXX
Posted

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.

irish daveyboy Community Regular
irish daveyboy
Posted

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.

benXX Rookie
benXX
Posted

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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      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing and biopsy for celiac disease. Unfortunately, where I live, access to comprehensive testing (including total IgA and endoscopy with biopsy) is limited, which makes things more complicated. Your explanation about small-bowel damage, nutrient absorption, and iron-deficiency anemia still aligns closely with my history, and it’s been very helpful in understanding what may be going on. I don't wanna get Endoscopy and I can't start eating Gluten again because it's hurt really with severe diarrhea.  I appreciate you taking the time to share such detailed and informative guidance. Thank you so much for this detailed and thoughtful response. I really appreciate you pointing out the relationship between anemia and antibody patterns, and how the high DGP IgG still supports celiac disease in my case. A gluten challenge isn’t something I feel safe attempting due to how severe my reactions were, so your suggestion about genetic testing makes a lot of sense. I’ll look into whether HLA testing is available where I live and discuss it with my doctor. I also appreciate you mentioning gastrointestinal beriberi and thiamine deficiency. This isn’t something any of my doctors have discussed with me, and given my symptoms and nutritional history, it’s definitely worth raising with them. I’ll also ask about correcting deficiencies more comprehensively, including B vitamins alongside iron. Thanks again for sharing your knowledge and taking the time to help. I’ll update the forum as I make progress.
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