High Antibodies Even On gluten-free Diet

[wattie]

Hi all,im new to the forum,i was diagnosed about 10 weeks ago through a blood test and endoscopy,my anti bodies level was 128,normal is 7,i had no symptoms apart from acid indegestion that i had for 12 yrs and took nexium everyday for it,then one day i felt really dizzy and tired and i went to the docs,he did a fbc blood test and i was anaemic,this is what started the chain of events to diagnosis.

I have been following the gluten free diet for 10 weeks now religiously and today i had my first outpatient clinic appointment with the gastro consultant and a blood test i had 2 weeks ago has came back that my iron levels are now mormal,my folic acid is now normal but my b12 is now low,the most alarming thing is my antibody count is still way up at 118 so she says im still getting gluten in my diet somewhere,im totally shocked at this as i followed the diet strictly,i was really disappointed at this,she says that it should be lower but it could just be early days for the antibody levels to go down,she says that its rare but some people dont respond to a gluten free diet but didnt say what would happen if that was the case,im terrified of what the treatment is for that,i hope ive just been glutened by something im eating my mistake but i dont know what,ive to go back in 6 months so i kind of got relief from that as they cant be that concerned or i would be back sooner.

[Roda]

If you are now just 10 weeks in then according to your post your last blood test was done 8 weeks in. That is really not very long. By the sound of it you have had symptoms (acid reflux) for 12 years. That is a long time for gluten to do damage and it may take quite awhile for the antibodies to go down. I didn't even have repeat blood work until the 6 month mark. Keep being vigilant. Everybody heals at a different rate. I would't get upset that the levels are still elevated at this point. Now I would have them checked between 6-12 months and see where you are at. By the way, has your reflux improved? This was my first "percieved" symptom that sent me to the doctor. It was horrible but I still refused to live on meds. After I went gluten free that was the first symptom to clear up for me.

[adab8ca]

i second what Roda says...it can take years to heal...not to freak you out but this does not happen quickly.give yourself time to heal...

[wattie]

i second what Roda says...it can take years to heal...not to freak you out but this does not happen quickly.give yourself time to heal...

thanks guys,im not too freaked out,i know its early days,it was the bit about some people dont respond to the diet and need some more tests like a longer endoscopy and dna testing,dont know what the dna thing is and i dont fancy the long camera,the normal one was bad enough,i will always stick to the diet i dont find it hard just a nuisance.

[wattie]

i second what Roda says...it can take years to heal...not to freak you out but this does not happen quickly.give yourself time to heal...

also,ive had no reflux since going gluten-free,although im still on nexium,i have to stop them the doc says so im stopping them today,hope its gone forever.

[Roda]

also,ive had no reflux since going gluten-free,although im still on nexium,i have to stop them the doc says so im stopping them today,hope its gone forever.

Just be aware that in some instances stoping PPI's cold turkey can lead to a rebound effect. Basically the meds are decreasing the acid produced in the stomach. When you stop taking it the acid producing cell are in effect "turned" back on, or start producing more acid. I was afraid to take a PPI because of that so I suffered until my diagnosis. Last year after my repeat scope the doc found a stomach ulcer, so he wanted to prescribe a PPI. I refused (I did try two capidex pills once to see and had horrible side effects) so he gave me an H2 blocker zantac. I did take it for about 2 months, long enough for my ulcer to heal. He wanted me to take it 6 months. I haven't had anymore trouble and I feel the ulcer is healed. I don't know if you can get rebound from H2 blockers or not, I didn't.