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Enterolab testing and budesonide

 
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WWWB
Little Blue Penguin
Little Blue Penguin
United States

Joined: 23 Mar 2014

Posts: 30
User's local time:
2017 Jun 27 - 7:12 PM



Location: Maryland

PostPosted: Sat Mar 19, 2016 9:32 pm    Post subject: Enterolab testing and budesonide Reply with quote

Hello fellow MC-ers:
My D is back with a vengeance. I had been doing ok for the last year or so after eliminating gluten, onions, garlic and milk and eating mostly chicken, rice and vegetables. But I went on vacation with my family and for a week ate much of what everyone else did - bread, onions, garlic, wheat crackers, RUM! Why oh why did I deny what I should know by now? Since mid-February I have been in a nose dive with out of control symptoms - very difficult to function normally. I tried lomotil, bentyl and pepto-bismol, all things that used to work for me in the past but now no luck. So I begged my dr for budesonide. She has reluctantly agreed to put me on 3x/1 week, 2x/1 week, 1x/1 week, nothing/week. I started today and took 3 capsules.
I want to do Enterolab testing and I just read on this forum that once I am on budesonide I have to wait 6 months before having testing done. I am not sure I can wait that long. I do not feel like I can talk to my doctor. She is not receptive to Enterolab or anything that does not fit in the structure of her traditional practice. Needless to say, I am looking for a new dr.
My question: Should I stop the budesonide right now and do the lab testing and then start the budesonide again?
I am so appreciative of this forum and the members. Anyone have any thoughts?
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tex
Site Admin
Site Admin


Joined: 24 May 2005

Posts: 30082
User's local time:
2017 Jun 27 - 6:12 PM


Food Intolerances : Gluten, casein, soy, and avenin, (avenin is the prolamin in oats, which is equivalent to the gluten in wheat), beef, grapes, peanuts, cashews, almonds, (but nut butters seem OK except for peanuts), citric acid, chocolate, and agar.
Location: Central Texas

PostPosted: Sat Mar 19, 2016 9:58 pm    Post subject: Reply with quote

Hi,

I'm sorry that you're having to deal with a relapse of symptoms. But the good news is that unless you have selective IgA deficiency, the EnteroLab tests will work just fine for you. You would have to take budesonide for at least 3 or 4 months for it to have a significant effect on your antibody production, and in most cases the tests will still work reliably unless budesonide has been used for more than 6 or 8 months. A few weeks or so will have no significant effect on the accuracy of the tests.

It's certainly possible that you may now have additional food sensitivities that you did not have the first time around, and the EnteroLab tests will help to pinpoint them. I recently developed a sensitivity to soy, that I found by ordering an EnteroLab test last September after I had a reaction from eating peanuts. I did a test about 7 or 8 years ago and it was negative for soy back then.

Good luck with the tests.

Tex
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cowboy

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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WWWB
Little Blue Penguin
Little Blue Penguin
United States

Joined: 23 Mar 2014

Posts: 30
User's local time:
2017 Jun 27 - 7:12 PM



Location: Maryland

PostPosted: Sat Mar 19, 2016 10:08 pm    Post subject: Reply with quote

Thank you for your quick response, Tex. I will go ahead with the tests and not worry. I have wondered if I have developed new sensitivities as absolutely nothing seems to sit well lately. Thank God for this forum. I have been at my wit's end and reading these posts seems to provide the only light in this tunnel. It's very nice to hear from you at midnight on a Saturday night!
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brandy
Rockhopper Penguin
Rockhopper Penguin
United States

Joined: 16 Oct 2011

Posts: 1800
User's local time:
2017 Jun 27 - 6:12 PM


Food Intolerances : gluten, dairy, soy, corn, sugar, quinoa, rasberries, blackberries
Location: Florida

PostPosted: Sun Mar 20, 2016 9:50 am    Post subject: Reply with quote

Hi,
Quote:

She has reluctantly agreed to put me on 3x/1 week, 2x/1 week, 1x/1 week, nothing/week.


Is it week or month for budesonide? If week that is generally not long enough to be effective. i.e. 3 weeks total?

On the board we find 3-4-5-6 months total stay on budesonide is pretty effective. Anything less than 3 months can lead to high risk of relapse.

Also, I was an budesonide user--I stepped down to lower dose when I got constipated or solid stool for several days.

Welcome, budesonide kicked in for me after about 3 days.

Brandy
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tex
Site Admin
Site Admin


Joined: 24 May 2005

Posts: 30082
User's local time:
2017 Jun 27 - 6:12 PM


Food Intolerances : Gluten, casein, soy, and avenin, (avenin is the prolamin in oats, which is equivalent to the gluten in wheat), beef, grapes, peanuts, cashews, almonds, (but nut butters seem OK except for peanuts), citric acid, chocolate, and agar.
Location: Central Texas

PostPosted: Sun Mar 20, 2016 10:13 am    Post subject: Reply with quote

Uh-oh! I just noticed that you live in Maryland. Unless the state law has recently been changed, Maryland is one of 2 states (NY is the other) where the legislators (in their infinite wisdom) believe that private citizens should not have the right to take responsibility for their own health and so they have passed laws forbidding private citizens from ordering medical lab tests directly from any lab. Only doctors licensed in those respective states can order lab tests.

Of course what really happened in these cases is that the legislatures caved in to lobbying efforts by the 2 states' medical organizations in order to grant a monopoly to physicians regarding the ordering of lab tests.

Many members here have found ways around those oppressive laws by having friends or family members in adjacent states order the tests for them (in the name of the member who needs the test, but with the out of state delivery address). Then after the sample is ready to be sent back to the lab (frozen) it as to be shipped (again from outside the state of Maryland or NY).

Members who do not have friends or relatives living nearby in adjacent states have usually been able to find another member of this discussion forum who is willing to help with the ordering and shipping the sample back.

I'm sorry that this is the case, because it means that if a physician is not willing to order these tests (and many of them are not willing) then the state effectively forbids their residents from looking out for their own health. IMO these are very cruel and unacceptable laws.

Tex
_________________
cowboy

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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WWWB
Little Blue Penguin
Little Blue Penguin
United States

Joined: 23 Mar 2014

Posts: 30
User's local time:
2017 Jun 27 - 7:12 PM



Location: Maryland

PostPosted: Sun Mar 20, 2016 3:42 pm    Post subject: Reply with quote

Brandy, yes it is for 3 weeks. I understand your concern, and I have it too. But at this point I am really desperate and my dr is fairly rigid. I have taken budesonide before and it has always worked for me. Im hoping this will help me now.
Tex, I did not realize that Maryland had that issue. I have read about NY and thought that was the only state. I will ask both my gastro and internist if they will order the tests, if only to see their responses. Otherwise I have a friend in Virginia that I can enlist. It will just entail a lot of extra driving, grrrrr.
Many thanks for both of your thoughtful responses.
Weezie
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