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Help. Need Some Advice
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3 posts in this topic

How many of your doctors initially thought you had chronic pancreatitis?

How many of you had fat malabsorption before or after diagnosis?

I'm asking mainly because the biggest thing doctors look for in chronic pancreatitis is fat malabsorption, but what if you have it because of damage to your villi instead? How do they check know it's one and not the other? My first GI was under the impression I think that I had chronic pancreatitis, because my fat malabsorption rate was high. However, my new GI hasn't said anything about it, and my colonoscopy and endoscopy tests are scheduled next month.

I don't drink, smoke, or do drugs, and the first two are main causes of chronic pancreatitis. I don't even have pain anywhere, which is a another typical sign for it. So, I'm just confused why a doctor wouldn't think damage versus chronic pancreatitis.

 

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Fat malabsorption was one of my symptoms before going gluten free. It went away after.

The pancreas is one of the organs that the celiac autoimmune response likes to attack. Celiac doesn't just affect the villii, but is a whole-body autoimmune attack with symptoms and damage from head to toe. Unfortunately, many people don't even realize how many of their health issues aren't normal until after they go gluten free because they've had them for so long, and many of their family members have them too. There are at least 200 symptoms that have been linked to celiac, and the list seems to grow longer every day.

If you have other symptoms that you think could be related to gluten, enough to suspect that you may have celiac, get tested before you try going gluten free because tests won't work after. And if you do react to gluten, trying to go back on it after going gluten free can be difficult because reactions get stronger. Many people have to forego testing because their reactions are too bad to eat gluten every day for the 6-8-12 weeks it takes to have accurate test results.

I'd also recommend not putting off testing for too long because celiac damage to the pancreas can become permanent. 

And kudos to you for doing research on your own. Blood tests for celiac are more accurate than the endoscopy. To test for celiac during an endoscopy they actually have to take biopsies from several locations (damage can be patchy) and then look at them under a microscope. Without the biopsies, endoscopies generally just look around to see if there are ulcers or inflammation and villii damage may not be apparent. I'd definitely find out what your doctor is planning to look for before he does the endoscopy and perhaps ask him to do more than he originally planned, and perhaps get the blood tests first.

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I had a blood test for celiac done about two years ago and it was negative, however my GI at the time said I could still have it. Basically when I eat gluten I get a metallic taste, and also deal with joint problems. Not eating gluten I don't taste metallic anymore, so not sure what that means. 

I've been gluten-free for four months now because my insurance wouldn't pay for my procedures and I couldn't afford them out of pocket. So I decided to do what I could to help the situation and I've noticed I have less watery stools, and now my poop is more solid (yet still not one solid piece), however if I get soy or some other thing I'm not supposed to have I have loose stools again. 

I guess when I do get my tests done I'll have to eat gluten for a bit so they can see, but my main concern is with PI, or pancreatic insufficiency. I should have clarified that my doctor didn't actually say chronic pancreatitis, he actually said pancreatic insufficiency, but I just assumed he meant the former. Now I'm beginning to wonder if he meant PI as a result of ongoing IBD. 

So, your fat malabsorption was due to damage to the villi? I'm asking because you said now you don't have that problem anymore. How long did it take before you healed enough so that you no longer had fatty stools?


 

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