Follow-up Biopsy Report

[newceliac]

I was diagnosed with celiac disease a little over a year ago. I felt better initially but then began having similar problems. My problems are still much better than during the many years prior to diagnosis but I am just not feeling like I think I should after 1 year gluten free.

I was still having problems with cramping, bloating, constipation, fatigue,etc. (in the meantime I had changed GI docs because the initial dr. who diagnosed me basically said to get on the internet and research celiac disease and stop eating gluten.) My initial biopsy which was done after positve blood test results found moderate to subtotal villous atrophy.

The new dr. decided to do a follow up scope since I was still having some problems. They called me today with the results. The results said "partially treated celiac disease". The nurse didn't really know any other details besides that.

I am confused by this. I have been trying so hard to be gluten free. Could it be that I am just not totally healed......or have I possibly still been getting gluten somehow.......or is it possible that other food intolerances are possibly causing me to not be totally healed? This is so frustrating. I guess "partially treated celiac" is better than moderate to subtotal villous atrophy but it is still frustrating.

I think I may have a casein intolerance, however I am not totally diligent in making sure I don't consume products with casein.

I also had mild to moderate gastritis.

I have a follow up appt in 3 weeks. Does anyone have any insight or information on what "partially treated celiac disease" means. Or any advice on questions I should ask the dr.

Thanks in advance.

[ravenwoodglass]

It means gluten is sneaking in somewhere. Have you checked all your toiletries, lotions, shampoos and such for gluten? Do you eat out frequently, consume much gluten free but 'made in a facility that processes gluten' foods, or do you have a mixed household? Have you checked all your supplements, meds both OTC and script with either the company that makes them or with your pharmacist? Do you do home remodeling or a lot of crafts? Many things used there are not gluten free like glues, clays, drywall compound, paints? Do you have a pet that consumes gluten food?

[ang1e0251]

It can be really sneaky this gluten. I found it in my spice cabinet, things I thought were OK had been replaced with a brand that wasn't. The syrups for my coffee looked OK but turned out the caramel coloring in that particular brand had gluten. I ate sweetener and didn't check the package, yep, it was cut with wheat.

I have a mixed kitchen and it works for me but I've read other posters say they couldn't get healthy until they banned the gluten from their house.

I hope this helps you find your hidden gluten. It's not fun to still be sick when you feel you are doing everything right.

[Gfresh404]

I was diagnosed with celiac disease a little over a year ago. I felt better initially but then began having similar problems. My problems are still much better than during the many years prior to diagnosis but I am just not feeling like I think I should after 1 year gluten free.

I was still having problems with cramping, bloating, constipation, fatigue,etc. (in the meantime I had changed GI docs because the initial dr. who diagnosed me basically said to get on the internet and research celiac disease and stop eating gluten.) My initial biopsy which was done after positve blood test results found moderate to subtotal villous atrophy.

The new dr. decided to do a follow up scope since I was still having some problems. They called me today with the results. The results said "partially treated celiac disease". The nurse didn't really know any other details besides that.

I am confused by this. I have been trying so hard to be gluten free. Could it be that I am just not totally healed......or have I possibly still been getting gluten somehow.......or is it possible that other food intolerances are possibly causing me to not be totally healed? This is so frustrating. I guess "partially treated celiac" is better than moderate to subtotal villous atrophy but it is still frustrating.

I think I may have a casein intolerance, however I am not totally diligent in making sure I don't consume products with casein.

I also had mild to moderate gastritis.

I have a follow up appt in 3 weeks. Does anyone have any insight or information on what "partially treated celiac disease" means. Or any advice on questions I should ask the dr.

Thanks in advance.

I had almost the exact same symptoms. It started off as gastritis and then realized something in milk was bothering (not lactose) me. Now gluten and dairy free and feeling so much better.

But I did test negative for both the blood test and the biopsy, so I'm going to get retested. But I do believe that it takes a while for the villi to heal, I've heard somewhere from 3 to 6 months. So maybe, just give it some time.

[ksymonds84]

Sorry that your still having problems. I am not sure of your age, but I read in Dr. Green's book, I believe it was called "Celiac, the Hidden Epidemic" that it can take up to two years to heal in adults. I am a little over a year and although much better, still dealing with lactose intolerance etc. Of course be diligent on finding hidden gluten, but you just may need more time to heal.

[Gemini]

Sorry that your still having problems. I am not sure of your age, but I read in Dr. Green's book, I believe it was called "Celiac, the Hidden Epidemic" that it can take up to two years to heal in adults. I am a little over a year and although much better, still dealing with lactose intolerance etc. Of course be diligent on finding hidden gluten, but you just may need more time to heal.

I agree totally with you! People focus too much on gluten but it sounds like new celiac may have other intolerances as well, and these can cause villous atrophy. It is not always a gluten problem.

Dr. Green's book was excellent and one every Celiac should read. It covers many of the questions I see posted here all the time and gives up to date, excellent explanations and answers.