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Today I started Budesonide
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Gabes-Apg
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2017 Nov 18 - 11:03 AM


Food Intolerances : Gluten, Yeast, Caesin, Soy, salad/raw veges and fruit
Location: Hunter Valley NSW Australia

PostPosted: Sat Mar 12, 2016 4:39 pm    Post subject: Reply with quote

Linda
even though we spend time in the Sun - the bodies ability to convert the sun exposure to viable Vit D3 in the body is reliant on many factors....

one key being adequate levels of magnesium
as we age, the bodies ability to convert the exposure to Vit D3 reduces.

For some reason the type of inflammation that occurs with MC does not show up in mainstream inflammation blood tests (that is why many here struggle to get diagnosis as doctors do not investigate further when inflammation test is in normal range)
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Gabes Ryan

"Anything that contradicts experience and logic should be abandoned"
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Joined: 14 Dec 2015

Posts: 169
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2017 Nov 18 - 10:33 AM


Food Intolerances : Gluten
Location: South Australia

PostPosted: Sun Mar 13, 2016 12:55 am    Post subject: Reply with quote

Tex, as far as I know I don't have another AI disease. However, I did test a strong positive for Lupus on an ANA test earlier last year, and my daughter has Lupus. I was sent to a Rheumatologist/Immunologist who examined me physically and said I don't have Lupus.

Gabes, my blood tests were showing inflammation but the latest tests didn't show inflammation. I guess I can assume I still have inflammation.

Jari, I have been gluten free for a couple of months, but I continued to have a small amount dairy (cheese) and egg. I have been dairy free for about 6 days (though I confess I had a chocolate bar). I am thinking that I will definitely have to do the full elimination diet.
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Linda

Lymphocytic Colitis Dec 2015
(symptoms started Nov 2011)
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Gabes-Apg
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Food Intolerances : Gluten, Yeast, Caesin, Soy, salad/raw veges and fruit
Location: Hunter Valley NSW Australia

PostPosted: Sun Mar 13, 2016 2:06 am    Post subject: Reply with quote

LInda
have your vit D levels been checked since your MC dx?

if you were borderline other AI issues and evidence of inflammation, you may be on the cusp of low range.

if you are deficient in Vit D3, magnesium, still clearing gluten antibodies and having dairy, this may well explain the slow response to the budenside.
and given you didnt have much success with the questran, my pondering is that lack of progress is more likely related to Vit D3.

based on what i have seen of the hundreds of people that have shared their journeys on this site, if it was me this is what I would do
- get Vit D3 level checked (if doctor wont bulk bill it, it will cost you about $68 i think )
- increase Vit D3 and topical magnesium
- Stop the dairy
- if you can afford it give the budenside another 4 weeks to work (and it is not causing any other symptoms side effects) keep taking it

if you were deficient in Vit D3 - it can take a min of 8 weeks to start to correct the deficiency. hopefully within the next 4 weeks you should have a better indicator if the budenside is going to work.

this is the tough part of life with MC, medication wise, what works for one person may not work for another. It can be lots of trial and error for some to come up with their best fit management plan

hope this helps...
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Gabes Ryan

"Anything that contradicts experience and logic should be abandoned"
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Joined: 14 Dec 2015

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Food Intolerances : Gluten
Location: South Australia

PostPosted: Sun Mar 13, 2016 5:44 am    Post subject: Reply with quote

Thanks for your response Gabes. I haven't had my Vit D checked since MC diagnosis. I will look into that. I will increase Vit D and topical magnesium. I have stopped the dairy. And I am continuing on with the Budesonide though I am dropping down to 6mg now as directed by the doctor.

I am sure I will get there.

butterfly 67
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Linda

Lymphocytic Colitis Dec 2015
(symptoms started Nov 2011)
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Adelaide
Adélie Penguin
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Joined: 14 Dec 2015

Posts: 169
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2017 Nov 18 - 10:33 AM


Food Intolerances : Gluten
Location: South Australia

PostPosted: Sun Oct 23, 2016 3:51 pm    Post subject: Reply with quote

I started this post back in February when I started Budesonide. I was on the medication for seven months and have now been off it for a month. I am doing okay. Not back to pre MC days but so much better. I have modified my diet. I haven't eaten gluten for six months, no dairy (though I tried a bit of cheese in the last few days), no fruit, no raw veggies and I am careful with other foods like onion and nuts. I have bone broth everyday in some form or another.

My question is: Would the budesonide still be in my system helping me? I have been off it for exactly 36 days. I am hoping that I have obtained some healing with my diet.

What is the life of Budesonide in our bodies?
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Linda

Lymphocytic Colitis Dec 2015
(symptoms started Nov 2011)
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tex
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2017 Nov 17 - 7:03 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 Oct 23, 2016 6:38 pm    Post subject: Reply with quote

Linda,

The half-life of budesonide and its metabolites in the bloodstream varies between 2 and less than 4 hours, so the serum level should be negligible after a few days or so. But it apparently lasts much longer in intestinal tissues. Theoretically, there should be very little budesonide left in the body by a couple of weeks after dosing has been halted. However, in a few cases symptoms have resumed/relapsed up to about 6 weeks after the drug was stopped. Of course the time lag may be due to the fact that if a diet is cross-contaminated by tiny amounts of gluten (or some other antigen), it can take a while for the antibody production to build up to the level where it exceeds the threshold at which a reaction will be triggered.

At 30 days, you're well on your way, but be cautious about reintroducing questionable foods too soon. After you are farther along with healing, your body will tolerate such tests much better. IOW, with adequate healing time, a failed test is less likely to trigger a serious flare. Instead, it should result in little more than a day or 2 of mild to moderate symptoms, whereas a serious flare could set you back almost to square 1.

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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Joined: 14 Dec 2015

Posts: 169
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2017 Nov 18 - 10:33 AM


Food Intolerances : Gluten
Location: South Australia

PostPosted: Mon Oct 24, 2016 12:08 am    Post subject: Reply with quote

Thanks Tex, it is good to hear that the steroids are most likely all out my system now. I will definitely take heed about reintroducing questionable foods too soon as I don't want to end up at square 1 that is for sure. The most I am thinking about trying at this stage is a banana because that seems to be a safe food for most. Summer is coming soon and that is a bit of a challenge with barbecues and salads. Gluten is off the table for life and maybe dairy as well.

What a difference a year makes! Last year I was on vacation which was rather stressful as I had all the symptoms of MC but didn't have a diagnosis. I did not have a clue what I should be eating and not eating. In December last year I got the diagnosis of MC and then the best thing happened...I found this site. Thank you so much for everything Smile
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Linda

Lymphocytic Colitis Dec 2015
(symptoms started Nov 2011)
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tex
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Joined: 24 May 2005

Posts: 30705
User's local time:
2017 Nov 17 - 7:03 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: Mon Oct 24, 2016 8:40 am    Post subject: Reply with quote

Linda,

We're all different of course, but FWIW it took me almost a year and a half before I was able to begin reintroducing foods again. But if/when you begin reintroducing foods, as you're probably aware, it usually works best to start with relatively small servings and slowly increase the size so that your digestive system can "relearn" how to produce adequate amounts of the correct enzymes needed to digest those specific foods.

You're most welcome. We appreciate the information and experiences that you've shared with us.

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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janden143

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Joined: 27 Jul 2016

Posts: 24
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2017 Nov 18 - 1:03 AM


Food Intolerances : Tramadol, scallops. Don't know about the others yet.

PostPosted: Tue Nov 08, 2016 3:08 pm    Post subject: Budesonide Reply with quote

In two days time I am to stop taking Budesonide. It has been brilliant and I feel normal again. It has even done wonders for my rheumatoid condition. I'm just scared that all my symptoms will come back when I stop taking it.
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jlbattin
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Joined: 30 Jun 2015

Posts: 593
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2017 Nov 17 - 7:03 PM


Food Intolerances : gluten, soy, dairy, egg, green beans, olive oil, raw nuts, and probably more but I'm still discovering
Location: Colorado

PostPosted: Tue Nov 08, 2016 3:30 pm    Post subject: Reply with quote

Some of your aches and pains will probably come back............I had a lot of aches and pains that all went away while I was on budesonide and several of them came back as I tapered down.........but they are not nearly as severe as they were when I was 50 pounds heavier and eating all that stuff that wasn't good for me..................
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Jari


Diagnosed with Collagenous Colitis, June 29th, 2015
Gluten free, Soy free, Dairy free, and Egg free since July 3rd, 2015
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janden143

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Food Intolerances : Tramadol, scallops. Don't know about the others yet.

PostPosted: Wed Nov 09, 2016 10:52 am    Post subject: Reply with quote

Hi Jari, I stop taking the Budesonide tomorrow but the following day my rheumatologist has told me to start on a minimum dose of prednisolone for the long term. He wants to add methotrexate but will liaise with my gastroenterologist. I stay on hydroxychloroquine that I have been on for about 9 years. It's the NSAIDS that caused my CC in the first place.
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Gabes-Apg
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Food Intolerances : Gluten, Yeast, Caesin, Soy, salad/raw veges and fruit
Location: Hunter Valley NSW Australia

PostPosted: Wed Nov 09, 2016 2:56 pm    Post subject: Reply with quote

Janden
as rheumatoid arthritis is related to inflammation, similar to MC, are you avoiding inflammation triggers? ie food and external triggers
it is easier to manage inflammation levels by avoiding the triggers, rather than treating inflammation with medications.

the other key aspect that we have learnt over the years from the hundreds of contributions in this forum is that any medication has limited scope to work if you are deficient in Vit D3 and magnesium. of note both of these nutrients are key in the management of inflammation in the body.
have you had your Vit D3 level tested in the past 6 months?
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Gabes Ryan

"Anything that contradicts experience and logic should be abandoned"
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janden143

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Joined: 27 Jul 2016

Posts: 24
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2017 Nov 18 - 1:03 AM


Food Intolerances : Tramadol, scallops. Don't know about the others yet.

PostPosted: Mon Nov 14, 2016 9:08 am    Post subject: Reply with quote

Hi Gabes, I'm not sure that I have ever had my D3 tested. I spend a lot of time in Alicante so get a lot of sun and my GI prescribed Evacal D3 1500mg BD along with the Budesonide. Now I am on prednisolone, my rheumatologist has prescribed two injections per year for my bones. I am taking magnesium now. I'm on my 5th day post Budesonide and so far so good. Fingers crossed! I gave up gluten because of this site but then my GI made me do a 'gluten challenge ' because he wanted to do biopsies to see if I am coeliac. I'm not so he said I could 'dip into gluten'. I prefer not to take the risk. I also gave up lactose but half of my pills have got that in!
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Gabes-Apg
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2017 Nov 18 - 11:03 AM


Food Intolerances : Gluten, Yeast, Caesin, Soy, salad/raw veges and fruit
Location: Hunter Valley NSW Australia

PostPosted: Mon Nov 14, 2016 12:47 pm    Post subject: Reply with quote

most people here take about 5000iu of Vit D3 per day - higher amounts if they are deficient or have ongoing inflammation

you may spend a lot of time in the sun, but your bodies ability to convert this sun exposure into useable Vit D3 for the body is not always thorough, so sun exposure should not be relied upon per say.
further, you need good levels of magnesium to use the Vit D3 properly.

the small amount of lactose in medications is not a big concern, compared to having any type of dairy in food and drinks. we strongly encourage people to give up dairy, as it is highly inflammatory to the gut
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Gabes Ryan

"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
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tex
Site Admin
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Joined: 24 May 2005

Posts: 30705
User's local time:
2017 Nov 17 - 7:03 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: Mon Nov 14, 2016 1:58 pm    Post subject: Reply with quote

janden143 wrote:
I gave up gluten because of this site but then my GI made me do a 'gluten challenge ' because he wanted to do biopsies to see if I am coeliac. I'm not so he said I could 'dip into gluten'. I prefer not to take the risk.


Unfortunately your GI specialist is behind with his education (but most GI docs are behind on this issue), because the celiac screening tests do not rule out gluten sensitivity. They can confirm gluten sensitivity if the test results are positive, but negative results most definitely do not rule out gluten sensitivity.

The medical community does not even have a test to detect non-celiac gluten sensitivity, which is the type of gluten sensitivity that most MC patients have, so they have no way to rule out gluten sensitivity. And even for celiacs, the screening tests used by doctors have such poor sensitivity that they are only able to confirm celiac disease in approximately 1 out of 20 celiacs, on the average. Because of that, roughly 95 % of celiacs are ever diagnosed, and people who have non-celiac gluten sensitivity are never "officially" diagnosed (because there's no diagnostic test available). Furthermore, gluten challenges have been shown to have an unreliable response rate among celiacs. Here is a quote from the book Microscopic colitis:

Quote:
The blood tests used to screen for celiac disease appear to be the primary problem. Research shows that for all practical purposes, they are capable of detecting only fully-developed cases of celiac sprue, and they even miss a large percentage of those. One such study looked at 115 subjects with biopsy-proven celiac disease and found that only 77 % of those who had total villus atrophy showed a positive serum anti-endomysial antibody test result.6 Furthermore, in this particular study, only 71 % of the total number of subjects had total villus atrophy, and for those who had partial villus atrophy, only 33 % showed a positive anti-endomysial antibody test result. As the research report so eloquently pointed out, “Serologic tests, in clinical practice, lack the sensitivity reported in the literature” (Abrams, et al., 2004, p. 547).

In another study, that involved a gluten challenge that was based upon the use of low to moderate amounts of gluten in the diet of subjects who were initially in remission, after a period of 12 weeks, only 43 % of the subjects showed a positive blood test result, even though 71 % of them were experiencing celiac symptoms, and an analysis of their small intestinal biopsies showed that 67 % of them had developed significant changes to various cellular markers of celiac disease.7 All of the subjects who showed a positive blood test result had developed villus atrophy, which seems to correlate with other, similar research.


Here are references 6 and 7 from that quote:

6. Abrams, J. A., Diamond, B., Rotterdam, H., & Green, P. H. (2004). Seronegative celiac disease: increased prevalence with lesser degrees of villous atrophy. Digestive Diseases and Sciences, 49(4):546–550. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/15185855

7. Lähdeaho, M.-L., Mäki, M., Laurila, K., Huhtala, H., & Kaukinen, K. (2011). Small- bowel mucosal changes and antibody responses after low- and moderate-dose gluten challenge in celiac disease. BMC Gastroenterology, 11(1), 129–138. Retrieved from http://bmcgastroenterol.biomedcentral.com/artic.../1471-230X-11-129

So you are wise to ignore your doctors advice about adding gluten back into your diet. Good for you, because that would be a very unhealthy move. Also, some of us react to the small amount of lactose in pills, so if you are unable to completely heal, you may find it necessary to also avoid all traces of dairy products.

It sounds as though you are on the right track for recovery. I hope you continue to improve.

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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