Endoscopy & Biopsy Question

[yunalesca]

I had an endoscopy done yesterday and the specialist told me it was normal. I really couldn't find out anything else, other than there was alot of activity in my small intestine.

I'm worried because although I'm still waiting for the biopsy results (which will probably be in on Thursday/Friday), if there was no 'visual' evidence of damage then wouldn't it be unlikely that the biopsy would show any damage?

Is the flattening of the stomach villi something that can be seen with the endoscopy or only biopsy?

I'm just so disappointed right now and not sure what to do. I've been sick since late 2003 and after I had a blood test in September which showed 2/3 positive tests for Celiac's (Anti Gliadin IgA and Anti Gliadin IgG) I really felt sure that this was what was wrong with me, all the typical symptoms seemed to be exactly what I had been going through.

[plantime]

As far as I know, only severe damage can be seen without a microscope. Just because the doc didn't see anything doesn't really mean anything. Be patient until your biopsy results, and remember that feeling better on the gluten-free diet is also a positive result. The blood test you had also showed positive. A biopsy cannot give a definite negative, only a definite positive. Meaning it is possible to get a false negative, but not a false positive. It works the same way as a pregnancy test in that respect.

[yunalesca]

Thanks, I'll try to hang in there I find out my biopsy results tomorrow.

[lemonade]

Hey,

tommorow i will be having a biopsy aswell. I have had blood tests done for Celiac, and they didnt show naything abnormal. Althouhg, i have all the typical symptoms of Celiac disease,and every ailment in my life can some how be linked to Celiac. I am nervous about tommorow. If the results come back negative i will too be frusterated because I dont know what else all this disstress i am in can be caused by.

Lemonade

[tiredofdoctors]

Even if you have a negative biopsy, you still have AntiGliadin antibodies -- your body is in attack mode. The best thing you can do for your health, knowing that, is continue with a gluten-free diet. If you want to discuss at more length, e-mail me at bodyworxinc@hotmail.com (It's a long, involved story, and most of the people on the board are probably sick of it -- and shaking their heads yes right now!) . . . Lynne

[yunalesca]

Biopsy came back negative, my doctor said that Celiac's is now ruled out - I asked her about having positive bloodwork, did that mean that I was having some sort of reaction to Gluten? I didn't really follow what she was saying, she seems to think that I am just weak and tired from having Glandular Fever a few months ago. She didn't recommended going on a Gluten Free diet because she thinks I'm likely to lose more weight by doing that, I'm 175cm tall and weigh 54 kilos now, I was 68 kgs at the end of 2003 when it first happened. She said my weight loss could just be related to metabolism. I'm having further blood tests done and will know if anything is abnormal next week, other than that she said if I wanted a second opinion she can refer me to another doctor.

Hope you had better luck than me Lemonade & thanks Lynne, I will probably get in touch because I'm a bit lost at the moment and not sure where to go from here so advice would be great

[Guest nini]

yunalesca, ok, you've had positive bloodwork... the negative biopsy means ABSOLUTELY NOTHING.

First of all, how many samples did they take? 2? 3? They needed to take a MINIMUM 6-8 samples, and THEN, even if it's negative that never completely rules out Celiac. You want to know why? Because you may still be in the early stages of it and have not developed significant damage YET. But your bloodwork definitely indicates a problem with gluten...

From my experience, and from what I've heard from MANY people is that the Dr.s are unwilling to dx Celiac on bloodwork alone. The mentality that the biopsy is the gold standard is soon to be going by the wayside. It is outdated information.

Take your bloodwork for what it is, and go gluten free immediately. Do not wait for any more tests. You are better off as far as insurance is concerned without a dx on your permanent record anyway.

You are gluten intolerant, period. Your positive blood test results are enough to indicate that at least.

[yunalesca]

My specialist wrote that he had taken 'lots' of samples in case (despite normal endoscopy) - though I'm not sure how many 'lots' is, I know when I had my appointment he said the standard now was to take about 6 samples. The strange thing is my doctor gave me a printout of the test report, and it says (I've cut a few things out)...

******

Specimen: Duodenum

Macroscopic: (SS/LG)

Two mucosal biopsies received 4 and 3mm respectively. All embedded.

Microscopic:

The sections show two fragments of small bowel mucosa which show normal villous and crypt morphology ...etc.

Summary: Biopsy, Duodenum

Normal Small Bowel Mucosa

****

I'm not sure if this means only two samples were taken? I know afterwards he told me there was alot of activity in my small intestine, that it kept pushing the endoscope back up, but hadn't said anything about only being able to take two samples.

I think I will be going gluten-free, or at least trying a gluten-free diet and seeing if that makes a difference for me.

[plantime]

Try the diet, see if you feel better. Just keep in mind that it sometimes takes a month or more to feel the difference. I recommend giving the diet 6 weeks. Stay on the board, and keep us posted!

[hollyd]

Biopsy came back negative, my doctor said that Celiac's is now ruled out - I asked her about having positive bloodwork, did that mean that I was having some sort of reaction to Gluten? I didn't really follow what she was saying, she seems to think that I am just weak and tired from having Glandular Fever a few months ago. She didn't recommended going on a Gluten Free diet because she thinks I'm likely to lose more weight by doing that, I'm 175cm tall and weigh 54 kilos now, I was 68 kgs at the end of 2003 when it first happened. She said my weight loss could just be related to metabolism. I'm having further blood tests done and will know if anything is abnormal next week, other than that she said if I wanted a second opinion she can refer me to another doctor.

Hope you had better luck than me Lemonade & thanks Lynne, I will probably get in touch because I'm a bit lost at the moment and not sure where to go from here so advice would be great

Hi yunalesca,

I live in Australia also. I was getting the worst run around from the GI my former GP sent me to. I had no confidence in her and so joined a yahoo group for celiac and asked for a recommendation for the best GI for celiac in my city. I am now being seen by a celiac specialist who really seems to know his stuff, on recommendations from several people in the group. I'm scheduled for my scope but haven't had it yet.

Here's the link to the group: Open Original Shared Link

Maybe they will have another doctor you can go to for a second opinion. I'm not as knowledgable as other people here but I would do just as they say and go gluten free. Even if this doctor says I don't have it I have never tried going gluten-free but will most definitely do it if I come up negative - to see if it helps me.

Good luck!

[CMCM]

For what it's worth, I recently read somewhere that the intestinal damage CAN be submicroscopic, and therefore would be missed. Presumably this would be an earlier stage of damage, and the damage would only be visible after it was more advanced. The blood test indicates activity, and you should take that seriously. How could following the diet for awhile hurt???? Try it!!!

[yunalesca]

I had an appointment with my doctor yesterday, I have to say she did seem alot more helpful - I was worried about asking if I could get the celiac blood test done again - but she actually said it would be worth doing & I also asked if this was something that should be checked on every now & then, and she thought it would be a good idea to get it checked twice a year.

My other tests were pretty much normal, I don't have a carry-over from glandular fever which is what I had thought so that doesn't explain the tiredness or weakness.

I'm going to try a gluten-free diet for a few months and see how I go.

Thanks for the link Holly, I'll definitely join & good luck with your endoscopy

I have wondered whether maybe I am just in the early stages and that's why I'm having problems with a diagnosis. When it first started I had really severe symptoms, and after awhile my symptoms were still bad but seemed to kind of level out - or maybe I just got more used to it. There seems to be alot of emphasis on having the positive Tissue transglutaminase (sp?) levels in the blood test and a positive biopsy and I wonder if this is causing people to be misdiagnosed because they're just in the onset stages of celiac's and enough time hasn't passed for the stomach to be in bad enough shape yet.