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Mutiple biopsies

El10
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El10 Rookie
El10
Posted

Anyone that got diagnosed with celiac after multiple biopsies when first biopsy was normal? I had a biopsy a year ago and it showed gastritis. based on my symptoms and unexplained iron deficiency my gastro suspects celiac and wants me to do another biopsy. 

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Scott Adams Grand Master
Scott Adams
Posted

Is it possible that they did not specifically look for celiac disease during the first endoscopy? To diagnose celiac disease they typically take at least 4 samples from very specific areas, and may not have done that in your case. I would ask. 

Have you had a celiac disease blood screening done? This is really the first step, before a biopsy is done. In some cases the blood test results are so stark that a diagnosis can be made without using biopsy. I would ask for a blood test first.

El10 Rookie
El10
Posted
  • Author
On 12/8/2020 at 8:22 PM, Scott Adams said:

Is it possible that they did not specifically look for celiac disease during the first endoscopy? To diagnose celiac disease they typically take at least 4 samples from very specific areas, and may not have done that in your case. I would ask. 

Have you had a celiac disease blood screening done? This is really the first step, before a biopsy is done. In some cases the blood test results are so stark that a diagnosis can be made without using biopsy. I would ask for a blood test first.

Thank you for reply. Yes they didn’t check for celiac specifically. it was a year ago and my doctor didn’t know what to look for. this is just the procedure for unexplained iron deficiency to undergo gastroscopy and colonoscopy. I did a blood test a year ago( after I had anti candida diet with minimal carbs basically inadvertantly I was excluding many foods with gluten before taking the test). I’ll ask my doctor for another blood test. This is so frustrating to know it takes years to be diagnosed. I really suffer everyday with the stomach cramps,memory issues,tingling in feet and extreme fatigue. I’m tired of losing hundreds of hairs also from all over my body and to keep losing weight. I can’t believe I need to suffer many more months/years just to find out the reason and to be diagnosed. 

Scott Adams Grand Master
Scott Adams
Posted

If you don't need an official diagnosis you could simply go gluten-free, if you are sure this is the cause. This isn't recommended by doctors because they may want to do follow up tests later, although none of my doctors have EVER asked me to do any, and I've had to ask about it.

I don't want to steer you away from an official diagnosis, or your doctor's recommendations, but if your symptoms are severe and you can't go gluten-free for a while due to how long it will take to get all the tests done, you'll need to decide if it's worth it.

El10 Rookie
El10
Posted
  • Author
9 hours ago, Scott Adams said:

If you don't need an official diagnosis you could simply go gluten-free, if you are sure this is the cause. This isn't recommended by doctors because they may want to do follow up tests later, although none of my doctors have EVER asked me to do any, and I've had to ask about it.

I don't want to steer you away from an official diagnosis, or your doctor's recommendations, but if your symptoms are severe and you can't go gluten-free for a while due to how long it will take to get all the tests done, you'll need to decide if it's worth it.

This is a tough desicion. I’m not sure this is the cause for my symptoms but other causes were ruled out such as lymphoma. if I connecting all my symptoms alongside iron deficiency and constipation( it was even seen in the CT scan I did. they say they saw colon enlargement suitable for constipation) and the fact my symptoms match the symptoms of the disease it makes it very likely. But I still want a formal diagnosis. its just frustrating it takes a long time. which part of the deudonum needs to be sampled? how many samples needed? I want to make sure that in the next gastroscopy(next month) they’ll do it as they should. Thank you :)

Scott Adams Grand Master
Scott Adams
Posted

Patients with celiac disease who ingest any wheat products develop abnormalities in the lining of the small intestine, particularly the upper part (jejunum). The latest protocol I've seen calls for at least 4 samples to be taken.

DJFL77I Experienced
DJFL77I
Posted

what did your blood tests say for celiac?

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El10 Rookie
El10
Posted
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12 hours ago, DJFL77I said:

what did your blood tests say for celiac?

I did a blood test for celiac a year ago and it was negative for celiac(I think 0.75). But I didn’t know that excluding gluten from diet can skew the results and before the test I did an anti candida diet(I tried many things because my symptoms are intense-intense hair loss from scalp and all over the body,tingling in feet and hands,memory problems,weight loss,iron deficiency, constipation,stomach rumbling and cramps) with minimal carbs so most of the foods containing were excluded. I need to do another one next month around the same time of my gastroscopy. 

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