4 replies to this topic

[livinthelife]

I have been struggling with ongoing gastro troubles off and on for a long time. I thought they were "just a part of life" until last summer a year ago when I got a parasite on vacation. I took several rounds of antibiotics but never fully recovered. The other three who got sick took meds and were well quickly. Doc did a celiac panel which was negative and a barium CT scan which showed nothing in January. I took even more antibiotics, which seemed to help a little Fast forward to August. 

 

Again, like last fall, I had accidents in the car, in the middle of the night, and uncontrollable problems, as I'm sure most of you are familiar with. I had a slight reprieve in symptoms for a few months and then they came back with a vengeance. All of the sudden I was having accidents again and losing weight without trying. I also have no energy. Hair loss, dry skin...so many things I've since read on this forum.

 

GP referred me to new gastro doc who did a colonoscopy. Found a polyp (had other polyps  eight years ago, none three years ago - have colonoscopy every five years due to personal and family history) and a tremendous amount of ileal villous blunting. He told me the biopsy presented celiac but that he needed to do an endoscopy to be 100% sure. Those results didn't show blunting but did show inflammation. He said I have "borderline celiac" and is redoing blood work just to make sure. Also, he wants me to go gluten-free for a month or two and says he's pretty sure I'll feel so much better.

 

Does this sound familiar to anyone? 

 

By the way, thanks to everyone who posts here. I am learning so very much!

 

 

[nvsmom]

Welcome to the board.  

 

There really is no borderline celiac - you either have it or you don't. That "borderline" talk probably refers to the degree of damage found. Some celiacs have a great deal of damage and others just have patchy. It is thought by some that early celiac (in the first few years) often results in patchier and less severe damage and the complete villus atrophy occurs in cases that have gone undiagnosed longer.  

 

I mostly agree with that but want to stress that not all celiacs experience the disease in the same way. Some celiacs only have one type of positive autoantibodies, some have all positive, some have all negative yet have a positive endoscopic biopsy, and yet others have a negative biopsy with positive blood tests.... There's a lot of variation.

 

If you are having the endoscopic biopsy, make sure you continue to eat gluten until the test is done or it will most likely give a negative result.  You might want to consider trying the blood tests again as autoantibody levels can fluctuate and might register on the blood test now. The tests to request are:

tTG IgA and tTG IgG

DGP IgA and DGP IgG

EMA IgA

total serum IgA (control test)

AGA IgA and AGA IgG (and older and less reliable tets)

 

Good luck with the tests and with going gluten-free afterwards.  I hope you feel much better soon.

[JustCricket]

I couldn't agree more with nvsmom. I think she's completely right about what the doc meant by "borderline." Hopefully, you've caught the illness early and have avoided a lot of issues. I hope you feel better soon!

[livinthelife]

I couldn't agree more with nvsmom. I think she's completely right about what the doc meant by "borderline." Hopefully, you've caught the illness early and have avoided a lot of issues. I hope you feel better soon!

Thank you both for your replies. I just got through with more blood work and am officially going gluten free! Wish me luck!! 
 
Has anyone ever heard of blunted villi "classic celiac" in the ileum from a colonoscopy biopsy and only inflammation in the duodenum with the endoscopy? The more I read, the more I realize how atypical so many people's are. I just hope I feel better QUICKLY!!

[mommida]

Celiac is mostly diagnosed from the blood panel and endoscopy with biopsy (of the small intestine not not the colon).

 

Keep a food journal.  It can help find "hidden" gluten.  (yes, that small splash of soy sauce is gluten.)  It can help find areas of cross contamination.  (Switching to gluten free I kept a bottle of vanilla from the "gluten days" that must have been contaminated. ~ the note taking helped me track it down.

 

It is possible that you will have other food sensitivities.  (if the villi in your small intestine are damaged, you may have problems with dairy as the tip of the villi is involved with digesting dairy.)

 

Get a copy of ALL your testing reports.  It will be handy to see a report of all the damage.  (my daughter has had many endoscopies with biopy for Celiac and Eosinophilic Esophagitis.  Since these are the main reason for the scoping, invariably the doctor neglects to mention the signs of chronic gastritus at the top of the stomach.  That is important to me to stay consistant with the symptoms she tells me.  It has caused her pain and only the written report told me why.