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Missing The First Time?

randomceliac

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randomceliac Newbie
randomceliac
Posted

I'll try to make this as short as possible! Back 4 years ago, I had a doctor who noticed I had pretty low vitamin levels in my body. He ordered a biopsy to test for celiac's disease, which came back negative. Other than that, I never had any symptoms.

However 3 months ago I started having stomach/intestinal issues. It was a very stressful time; I graduated college and started my first real job. I've had horrible cramping and other unpleasant things happening constantly over the past 3 months...constant pain being almost unbearable. Last week a doctor did a blood test for celiac disease, which came back positive. Now I'm scheduled to get a biopsy (again) to confirm. Is it possible for the condition to not become active until now? Like is it possible for the biopsy to come back positive now even though it was negative 4 years ago? FYI I'm a 22 year old male if that's relevant.

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kareng Grand Master
kareng
Posted

Sounds like they didn't do the blood test 4 years ago. Your small intestine is like 22 feet long. Every inch is probably not damaged. They could have missed the damage. Hopefully, they will hit it now. Make sure they do more than 1 biopsy. I have heard that some doc's only take 1 sample. :huh: After your biopsy, go gluten free because you have the positive blood and the pleasant symptoms.

MelindaLee Contributor
MelindaLee
Posted

A friend of mine was recently diagnosed. She said she had a blood test in 2008 which was negative. She's had horrible symptoms, including SEVERE anemia. I don't know. :unsure:

T.H. Community Regular
T.H.
Posted

Is it possible for the condition to not become active until now? Like is it possible for the biopsy to come back positive now even though it was negative 4 years ago?

Yup, it definitely is. Celiac Disease can trigger at any time during your life, if you have the genes for it. So it could trigger the day after a negative test and you'd have a positive biopsy a few WEEKS later, sometimes.

However, it's also possible that you have a false negative the first time round, too. False biopsies are not unheard of, especially if you happened to have patchy damage, and they picked the wrong 'patch' to look at.

If I had a positive blood test, after the biopsy, I'd go gluten free for a few months at least,even if it's negative, just to see if it makes me feel better.

randomceliac Newbie
randomceliac
Posted
  • Author

Thank you all so much for your responses. However like I said in my first post, I've had constant non-stop abdominal pain for 3 months now and given the blood test I want to switch to gluten free immediately...but I know you can't until after the biopsy. My question is do I really need a biopsy? Are false positives on blood work common or something? From what I've heard, it seems like the blood work would be more accurate since it sounds like biopsies have just as much chance of being wrong.

ravenwoodglass Mentor
ravenwoodglass
Posted

Thank you all so much for your responses. However like I said in my first post, I've had constant non-stop abdominal pain for 3 months now and given the blood test I want to switch to gluten free immediately...but I know you can't until after the biopsy. My question is do I really need a biopsy? Are false positives on blood work common or something? From what I've heard, it seems like the blood work would be more accurate since it sounds like biopsies have just as much chance of being wrong.

False postives are very rare in the blood work. False negatives in both blood and biopsy are much more common. The choice of whether to continue on gluten and biopsy is up to you. If you feel you can stay compliant and be strict with the diet without one then go ahead and start the diet. However if at a later date you do decide you want the biopsy you will need to go back to a full gluten diet for a couple of months to damage yourself enough for any chance at an accurate biopsy. Your blood tests and resolution of your issues gluten free are also diagnostic. Read as much as you can here on what you need to do in your home and in restaurants etc to protect yourself and avoid cross contamination.

If you can take it Pepto Bismal may help with the abdominal and stomach pain but some have great relief very quickly from the diet. Do avoid dairy at first to heal the fastest and go with whole unprocessed foods while you are healing. If you live near a Wegmans they label all their gluten-free food with a circle G which can make things easier.

I hope your feeling better soon.

Skylark Collaborator
Skylark
Posted

It sounds like you had gluten issues and some malabsorption earlier, but you weren't celiac. Stress can trigger the full-blown autoimmunity.

What bloodwork was positive? If you had high anti-EMA or anti-DGP, there are publications saying a biopsy is unnecessary as those two are quite specific for celiac disease. TTG alone, and you should go through with the biopsy as it can come up in other inflammatory bowel diseases and autoimmune conditions.

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glutenfr3309 Rookie
glutenfr3309
Posted

I'll try to make this as short as possible! Back 4 years ago, I had a doctor who noticed I had pretty low vitamin levels in my body. He ordered a biopsy to test for celiac's disease, which came back negative. Other than that, I never had any symptoms.

However 3 months ago I started having stomach/intestinal issues. It was a very stressful time; I graduated college and started my first real job. I've had horrible cramping and other unpleasant things happening constantly over the past 3 months...constant pain being almost unbearable. Last week a doctor did a blood test for celiac disease, which came back positive. Now I'm scheduled to get a biopsy (again) to confirm. Is it possible for the condition to not become active until now? Like is it possible for the biopsy to come back positive now even though it was negative 4 years ago? FYI I'm a 22 year old male if that's relevant.

like the others have said, it is possible for it pop up later on in life.

i tested negative for blood tests and biopsy even though my doc saw the damage in my small intestines. i always seemed to have digestive issues growing up but never thought anything of it. it didn't start to truly effect my daily life until a few months ago. my doc believes had i not caught it this early i probably would have been positive years from now.

as far as if it's necessary to have another biopsy- doc's use the biopsy as the 'golden standard' for diagnosing celiac. i think it's up to you what you decide but in the end if you feel better not eating gluten regardless of tests results continue the gluten-free diet!

randomceliac Newbie
randomceliac
Posted
  • Author

It sounds like you had gluten issues and some malabsorption earlier, but you weren't celiac. Stress can trigger the full-blown autoimmunity.

What bloodwork was positive? If you had high anti-EMA or anti-DGP, there are publications saying a biopsy is unnecessary as those two are quite specific for celiac disease. TTG alone, and you should go through with the biopsy as it can come up in other inflammatory bowel diseases and autoimmune conditions.

Yes I had all 3 of those tests done, all came out positive.

Skylark Collaborator
Skylark
Posted

You might talk to your doctor about how necessary it is for you to keep eating gluten before the biopsy. You're obviously celiac and I can totally see where you would want to stop eating gluten and being in pain.

Here is a study showing 99% specificity for anti-DGP.

Open Original Shared Link

One suggesting biopsies are not necessary with anti-EMA

Open Original Shared Link

And another showing how good anti-EMA is at predicting celiac.

Open Original Shared Link

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    • trents
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      By trents · Posted

      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
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