So I posted a while back that I had resigned myself to taking 3 mg Budesonide per day for the foreseeable future because trying to reduce it always caused D but as long as I took it I was fine. When I posted that I was still avoiding gluten for the most part.
Since then I started experimenting with eating small amounts of gluten on occasion and still taking the Budesonide. Nothing bad happened so I increased it. Still nothing bad so now I am eating gluten on a daily basis. Not really limiting it at all - other than still don't eat much in the way of baked deserts.
I am doing fine. Still taking the 3 mg Budesonide and still taking Magnesium, Vit d, Coconut Oil and Boudarlii. (sp) Also a Tumeric supplement and Vit B. I have been eating the gluten without limitation for about a month now. My Enterolab results were 37 on gluten and 20 on Soy. I never did limit the soy but was totally gluten free for about 4 months.
Not sure what to think. Other than my gut has finally healed and now with the Budesonide and other supplements I can handle the gluten? I will always be prepared to go back to gluten free if I need to but for now, I am enjoying my varied diet.
Any thoughts? Other than I might be flirting with disaster. :)
Cautiously Optimistic
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Granny,
It depends on your goals. If you plan to get off of budesonide then you will need to be gluten free. MCers who take
budesonide but do not go gluten free have a high incidence of relapse within 2 weeks of the last dose. Budesonide kind of gives a
bit of protection for eating gluten while you are on it. i.e. the first 2 months of my 4.5 months on Budesonide I
was eating gluten (and got solid stool) because I was in denial about our disease and it was not until the last 2.5 months of my 4.5 month stint on Budesonide that I went gluten free and then off of budesonide for good.
It also depends on your age and if you want to stay on budesonide forever. I live in Florida and we have a lot of seniors
who live into their 100's. If you are in your late 80's and want to stay on budesonide forever and eat gluten until you
die that is one course of action. The problem is that budesonide gets less effective over time. By that I mean if you
are on 1 pill for 5 years it may take 2 pills at some point, say 5 or 7 years to achieve the same results while eating
gluten if that makes sense. We've had several folks who post that budesonide gets less effective over a long time.
On the positive side....some folks have spontaneous remission.
On the dangerous side.....yes you could be flirting with disaster.
It depends on your goals. If you plan to get off of budesonide then you will need to be gluten free. MCers who take
budesonide but do not go gluten free have a high incidence of relapse within 2 weeks of the last dose. Budesonide kind of gives a
bit of protection for eating gluten while you are on it. i.e. the first 2 months of my 4.5 months on Budesonide I
was eating gluten (and got solid stool) because I was in denial about our disease and it was not until the last 2.5 months of my 4.5 month stint on Budesonide that I went gluten free and then off of budesonide for good.
It also depends on your age and if you want to stay on budesonide forever. I live in Florida and we have a lot of seniors
who live into their 100's. If you are in your late 80's and want to stay on budesonide forever and eat gluten until you
die that is one course of action. The problem is that budesonide gets less effective over time. By that I mean if you
are on 1 pill for 5 years it may take 2 pills at some point, say 5 or 7 years to achieve the same results while eating
gluten if that makes sense. We've had several folks who post that budesonide gets less effective over a long time.
On the positive side....some folks have spontaneous remission.
On the dangerous side.....yes you could be flirting with disaster.
-
grannykathy
- Adélie Penguin
- Posts: 213
- Joined: Fri Jun 08, 2018 12:21 pm
brandy
Thanks Brandy. I am almost 70 and the idea of taking the small dose (3 mg) of budesonide for the rest of my life doesn't bother me. However having to increase it later might. If nothing else because of the expense. When I first started the Budesonide (9mg) I was eating gluten and my diarrhea stopped almost immediately and then turned to constipation. At that point I quit the pills cold turkey because I didn't know any better.
Of course the D came raging back. It was later I found this site and realized I needed to go gluten free AND that I would have to wean off the B gradually. So that's what I did but could never get completely off the Budesonide even while gluten free. I finally settled on the 3 mg a day and did well and like I said, am now eating gluten and am still fine. If this continues, then I am fine with taking the 3 mg for the rest of my life. If it doesn't, well then its back to plan A.
Thank you for you thoughts and info about others who have been able to eat gluten while on low doses of Budesonide.
Thanks Brandy. I am almost 70 and the idea of taking the small dose (3 mg) of budesonide for the rest of my life doesn't bother me. However having to increase it later might. If nothing else because of the expense. When I first started the Budesonide (9mg) I was eating gluten and my diarrhea stopped almost immediately and then turned to constipation. At that point I quit the pills cold turkey because I didn't know any better.
Of course the D came raging back. It was later I found this site and realized I needed to go gluten free AND that I would have to wean off the B gradually. So that's what I did but could never get completely off the Budesonide even while gluten free. I finally settled on the 3 mg a day and did well and like I said, am now eating gluten and am still fine. If this continues, then I am fine with taking the 3 mg for the rest of my life. If it doesn't, well then its back to plan A.
Thank you for you thoughts and info about others who have been able to eat gluten while on low doses of Budesonide.