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Celiac Prediagnosis


pbc+celiac

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pbc+celiac Rookie

Just a couple of questions. I have a positive biopsy and received blood work results today. AB IGA Transgluminate is 4 times normal and Endomysial titer is positive 1:640. The Reticulin is normal though. Just wondering if this is pretty much a diagnosis of celiac?

I have primary biliary cirrhosis(autimmune liver disease) and over the last month have had a myriad of strange symptoms and had endoscopy for some of those 3 weeks ago. Symptoms fatigue, muscle weakness, dizziness, heartburn, hands are very shaky, muscle twitching, extreme dry mouth, cracked lips, eczema. No bowel issues though which seems strange. I was just wondering if others had experienced any of these odd symptoms.

Any input would be great. I have the liver disease for a long time and have always had some of these but they have been more severe this last month.

Did you have major malabsorption with vitamins or anemia?

Sorry for all the questions. My daughter has type 1 diabetes so she will also be tested as a precaution.

Thanks in advance for any input!!!


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ravenwoodglass Mentor

Yea you are one of us, welcome.

With a postive biopsy and positive bloods it leaves no doubt. It is not as unusual as you might think for us to not have gut issues at first.

Nutritent defiecencies are very common until the gut heals. Your doctor should run vitamin and mineral panels and most of us benefit from supplements, just make sure they are gluten free.

You have come to a great place for info and support. Ask any questions you need to it can be hard at first but especially once your feeling better it gets easier.

elye Community Regular

If you had a positive biopsy, you are celiac. Rarely are there false positives. There is such a myriad of symptoms of this disease, it can be mind-boggling, and this is so often the reason it takes the average celiac 11 years to be properly diagnosed.

For example: I had no noticeable symptoms before diagnosis, with the exception of low iron. The diagnosis came right out of left field and I was certain that the lab had mixed up my results with someone else's!

Then there is the person who is completely incapacitated with gastrointestinal distress, migraines, depression, exhaustion. . . . ....it is amazing, this range of effects that gluten has (or does NOT have) on those with whom it tinkers.

Your skin symptoms are mentioned often by other posters here as conditions that go completely away once gluten is stopped. Heartburn is a classic symptom, and I've read many people who have spoken about dizziness, as well.

You've come to the right place! This is wonderful resource for info and support...welcome! :)

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    • Trish G
      Thanks, that's a great addition that I hadn't thought of. 
    • trents
      Other diseases, medical conditions, medications and even (for some people) some non-gluten foods can cause villous atrophy. There is also something called refractory celiac disease but it is pretty uncommon.
    • trents
      knitty kitty asks a very relevant question. So many people make the mistake of experimenting with the gluten free diet or even a reduced gluten diet soon before getting formally tested.
    • trents
      Another great fiber option is dried apricots. Four of them give you 3g of fiber and I find they don't produce all the gas that some other high fiber options do. They taste good too. Costco sells a large bag of them that are labeled gluten-free so you don't have to worry about cross contamination issues like you might in bulk grocery settings.
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