Negative biopsy results , still symtoms

[manaja]

Hi everybody, two years ago I went for a blood test for Celiac disease , my doctor suspected something was wrong , my brother has Celiac , biopsy confirmed this , anyway my blood test in 2014 confirmed the antibodies, I did have an appointment for a biopsy but cancelled it , we were going away , so I made another one then eventually got to a hospital near where I live which suited me better. Last week I went for the biopsy , the doctor took pieces from my stomach and six from my small intestine, after she had done them she said " Are you still eating gluten ?" , my reply was "Yes of course ", which I am she said everything looked normal , but wait for the result from the biopsy. Anyway that came this morning , the doctor has the results and said that there is no further action required and that everything is normal and ok . My question is do I have a sensitivity to gluten only without disease ? My brother seems to think I could still have Celiac , but it may be further down the intestine, he says , " you either have it or you dont "... Im very confused , Im still eating gluten , I still get bloating , wind soft stools , I have no idea what to do now, I don't particulary want another biopsy doing. I did do some scuba diving a few years ago , and after one dive , I did have a very bad stomach after ingesting a lot of water, sulphur burps , loose bowel movements , that was Nov 2013, my friend said then it may be Giardia I have, I mentiomed that to my doctor , he just rubbished the idea and mentioned that if it was Giardia I would be like that all the time,  Many thanks for any reply

[lisas11lisa]

2 hours ago, manaja said:

Hi everybody, two years ago I went for a blood test for Celiac disease , my doctor suspected something was wrong , my brother has Celiac , biopsy confirmed this , anyway my blood test in 2014 confirmed the antibodies, I did have an appointment for a biopsy but cancelled it , we were going away , so I made another one then eventually got to a hospital near where I live which suited me better. Last week I went for the biopsy , the doctor took pieces from my stomach and six from my small intestine, after she had done them she said " Are you still eating gluten ?" , my reply was "Yes of course ", which I am she said everything looked normal , but wait for the result from the biopsy. Anyway that came this morning , the doctor has the results and said that there is no further action required and that everything is normal and ok . My question is do I have a sensitivity to gluten only without disease ? My brother seems to think I could still have Celiac , but it may be further down the intestine, he says , " you either have it or you dont "... Im very confused , Im still eating gluten , I still get bloating , wind soft stools , I have no idea what to do now, I don't particulary want another biopsy doing. I did do some scuba diving a few years ago , and after one dive , I did have a very bad stomach after ingesting a lot of water, sulphur burps , loose bowel movements , that was Nov 2013, my friend said then it may be Giardia I have, I mentiomed that to my doctor , he just rubbished the idea and mentioned that if it was Giardia I would be like that all the time,  Many thanks for any reply

Personally...Since Celiac Disease is hereditary, I would get off and stay off gluten, if you research it...it is not good for anyone!!!... I never had a biopsy because I had just had a procedure for something else and the insurance wouldn't cover it...but they are 99 percent sure thats what it is...to many other symptoms...I'm fine without knowing 100 percent...and I feel soooo much better...try it for a couple weeks see how u feel?...and never stop doing your own research...goodluck!!

[Jmg]

4 hours ago, manaja said:

 My question is do I have a sensitivity to gluten only without disease ? My brother seems to think I could still have Celiac , but it may be further down the intestine, he says , " you either have it or you dont "... Im very confused , Im still eating gluten , I still get bloating , wind soft stools , I have no idea what to do now,  

You have the antibodies, so your body is seemingly reacting to gluten. Your brother may be right, some people have damage further down the intestine than the endoscope reaches. Some on here have had capsule endoscopies to explore exactly that possibility.

As to what to do, well it's up to you but I based upon your symptoms and the positive blood tests I suggest you now try excluding gluten from your diet, at least on a trial basis. Keep a food diary noting what you eat, when and how you feel. Try and note any and all of your symptoms also. Carry a little notebook or use your phone, just remember to jot it down! Do this for a few weeks and see what affect the diet has on you. Your brother will be able to help advise you on how to avoid hidden sources of gluten and there's an FAQ thread on this site that will give further info. 

I had a negative biopsy, but will never eat gluten again based on the results of just such an elimination diet. Give it a try and see  the diet can be a pain, but it's easy to stick to when your feeling so much better.

Best of luck!

[RMJ]

I was not able to have a biopsy when I first discovered that my celiac antibodies were high.  I decided going gluten free was worth it even without knowing how my villi looked, because I didn't want a bunch of autoimmune (against me!) antibodies in my body.  You might try gluten free and see what that does to your antibody levels.  Just be aware that the antibody tests need to be performed by the same lab in order to compare them.

[manaja]

Many thanks for the replies , sorry for posting twice , I didnt realise it had posted twice ! Im seeing the doctor who did the endoscopy again at some point , but im not going to have another biopsy, Im going to try the diet and stick with it, see how it goes, I have the antibodies so possibly its that. Many thanks again

[Jmg]

Good luck, remember that if you do have an intolerance, it's essential that you exclude all gluten. You can't cheat or have a little bit every so often as the immune system will respond to the smallest amount. Come back here for help if you need it.

[manaja]

Many thanks , the other thing I was going to ask is , is it still possible to eat like a horse (which I do ) feel real hunger pangs , lose a couple of pounds , and still have functioning villi ? Its all a bit beyond me. I never put weight on , 72kg, if I was malabsorbing it would be a positive biopsy , maybe ?

[ravenwoodglass]

You have a lot of small intestine and damaged places can be missed when biopsies are taken. Also some doctors don't consider biopsies to be positive until the villi is completely destroyed.  You have a brother with celiac and you had positive antibody tests. IMHO you should consider yourself celiac and get strictly gluten free. Repeat antibody tests in 6 months or so along with resolution of your symptoms should confirm things for you and your doctor.

[manaja]

Thank you all for the replies , its very helpful , thanks again