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Confusing Biopsy Results


sagapocristo

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sagapocristo Newbie

Hello everyone,

My mom was diagnosed w/celiac disease, so I had the blood tests to see if I have the disease. I have not had any diarrhea or other intestinal symptoms over the course of my life (I'm in my early 40s), but just wanted to be sure.

My blood test results came back positive (I don't know the numbers, but had the endomysial and gliadin antibody tests, and I think one more). I then had an endoscopy/biopsy, with the following results: "slight villous blunting, focal intraepithelial lymphocytes, and lamina propriaa plasma cell proliferation. The findings are non specific and might be associate with mild duodenitis. However, the possibility of an early celiac or treated celiac disease cannot be excluded."

Since I am in my early 40;s, the doctor said that early celiac disease doesn't make sense, but he still recommended a gluten-free diet. I've been on the diet for a year, and don't feel any different. My doc said that if I want, I can slowly reintroduce gluten, see how I feel, and then have another blood test if I still feel OK.

Two questions: what do you think of my biopsy report? Should I try eating gluten again? I'm not sure on what basis to make my decision, and am very confused. Thanks for any help you can provide.


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darlindeb25 Collaborator
;) i wouldnt eat gluten if i was you, but that is up to you--your doctor is wrong though---40 is not too early to have celiacs--celiacs knows no age level--babies are born with celiacs, you are born with the gene for celiacs and it can be triggered at any point inyour life--read all the post in here and you will find lots of useful info--deb
plantime Contributor

40 is how old I am now, and I was just diagnosed. I have had mild symptoms on and off all my life, just no one ever knew what was the actual cause. You have positive bloodwork, and the blunting to me is a positive biopsy. No conflict.

Guest jhmom

I would remain on a gluten-free diet for the simple reason your lab tests were positive as well as the biopsy! People with Celiac don't always have GI problems but if you consum gluten it can damage your small intestines and eventually you will have malabsorption problems.

jgkansas1 Newbie

Perhaps you have celiac--perhaps you have another condition such as a skin condition called dermatitis herptiformis(DH)-both are related to Gluten sensitivity. Or you could just have a wheat allergy. Gluten sensitivity can display at any age for those carrying the gene and in several diferent but related ways. I am 39 and just diagnosed with DH. perhaps my gut might show the same type of results as yours should I ever chose to get a biopsy. I've a neice that was diagnosed 20 years ago with celiac sprue due to her failure to thrive as a child leading her parents to seek out a real answer and not jut take a doctors pat answer that she was just slow to mature. And yes it is true that you should remain gluten free to avoid potential nutritional problems but it is a choice you have to make. But be sure to watch that your diet does contain enough vitamins and minerals. Many of the gluten free items that are on the market or in speciality stores do not contain enough viamins and minerals to make up for what you are not getting in foods that contained gluten. Routinely follow up with your doctor and learn all you can about what to watch for concerning gluten related diseases. Study up on allergies, they do not always demontrate the same symptoms every time you are exposed to the offending agent. That is why this disease is so hard for doctors to spot until it has progressed quite far for many who are affected by it.

sagapocristo Newbie

Thank you all so much for your responses. I'm thinking that I may want to find another gastroenterologist and stick w/the gluten-free diet. I'll look on the Doctors board to see what criteria to use to choose a doc.

Thanks again.

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    • Russ H
      The anti-endomysial antibody test is an old test that is generally reported as positive or negative - a lab technician looks down a microscope to check for fluorescence of the sample. It is less sensitive but more specific for coeliac disease than IgA tTG2. Hence, it is not "barely positive" - it is positive. People diagnosed in childhood recover much more quickly than adults.  I would look at testing all 1st degree relatives - parents, siblings.
    • xxnonamexx
      What about digestive enzymes that I hear help? I take align 5x probiotics daily.
    • Samanthaeileen1
      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve.    thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poop! She has the weirdest poop issues.    How long did it take y'all to start seeing improvement in symptoms? 
    • Wheatwacked
      My son was diagnosed when he was weaned in 1976 after several endoscopies.  Given your two year old's symptoms and your family history and your pediatrition advocating for the dx, I would agree.  Whether an endoscopy is positive or negative is irrelevant.   That may happen even with endoscopy.  Pick your doctors with that in mind. In the end you save the potential trauma of the endoscopy for your baby.   Mine also had really nasty poop.  His doctor started him on Nutramigen Infant because at the time it was the only product that was hypo allergenic and had complete nutrition. The improvement was immediate.
    • RMJ
      So her tissue transglutaminase antibody is almost 4x the upper end of the normal range - likely a real result. The other things you can do besides an endoscopy would be: 1.  Genetic testing.  Unfortunately a large proportion of the population has genes permissive for celiac disease, but only a small proportion of those with the genes have it. With family history it is likely she has the genes. 2.  Try a gluten free diet and see if the symptoms go away AND the antibody levels return to normal. (This is what I would do). Endoscopies aren’t always accurate in patients as young as your daughter. Unfortunately, without an endoscopy, some doctor later in her life may question whether she really has celiac disease or not, and you’ll need to be a fierce mama bear to defend the diagnosis! Be sure you have a good written record of her current pediatrician’s diagnosis. Doing a gluten challenge for an endoscopy later in life could cause a very uncomfortable level of symptoms.   Having yourself, your husband and your son tested would be a great idea.  
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