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Tapering off of Budesonide should I add antihistimine?
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mwt
Little Blue Penguin
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2017 Sep 25 - 12:56 PM


Food Intolerances : Gluten, dairy, sugar, soy

PostPosted: Thu Feb 25, 2016 8:34 am    Post subject: Tapering off of Budesonide should I add antihistimine? Reply with quote

I have been on Busdesonide for 10 weeks and have tapered to one 3mg per day (this is my 2nd time to take Busdesonide in 9 months but I only took it for 3 weeks the first time!). I am wanting to taper off completely and understand from this site and your book that doing it very slowly my help with remission and that adding H1 antihistamine may also help. I am extremely diet compliant, no grain, no dairy, no soy, no nuts, no raw vegetables, no sugar for 2 years and I rarely eat eggs. (I am have diagnosed Celiac disease and osteoporosis). I have been unable to determine my sensitivity to any particular histamine foods. I'm not saying I don't have sensitivity, just that I can detect specific symptoms after consumption.

My question is this... how long should I slowly taper? And if I should add an antihistamine (and at what dosage)?
(Also, I don't know if this is relevant or not but I do not have any issues with seasonally allergies or even common colds that
people often take antihistamines for).
And one more question. Would you think that I would benefit from testing by Dr Fine? If so, which tests?

Ant help would be appreciated!
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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: Thu Feb 25, 2016 1:10 pm    Post subject: Reply with quote

my first thought is - Have you been taking Vit D3 and magnesium? have you had your Vit D3 level checked in the past 9 months since taking the Busdesonide?

the taper is individual - everyone is different. Listen to your body.
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Gabes Ryan

"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
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mwt
Little Blue Penguin
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Food Intolerances : Gluten, dairy, sugar, soy

PostPosted: Thu Feb 25, 2016 1:53 pm    Post subject: Reply with quote

Yes I do take Vit D3 and magnesium is in my Multi Vit/mineral but not a specific magnesium supplement. I understand that magnesium is difficult to supplement orally. I do take Epson Salts baths on a regular basis 2/wk.

Do the majority of people find that adding an antihistamine such as Claritin is beneficial in getting a remission?
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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: Thu Feb 25, 2016 2:00 pm    Post subject: Reply with quote

the amount of magnesium that is in your multi is not enough - it will only be providing about 1/5th of what you need

taking magnesium orally is not difficult, you need the right type, and spread the dosage over the day.
Many here use magnesium lotion/spray daily

if you are having histamine issues, then yes antihistamines will help.
it can be trial and error as to which of the antihistamine medications work best for you.

There are some people here that anti-histamines were not enough
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"Anything that contradicts experience and logic should be abandoned"
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tex
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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: Thu Feb 25, 2016 3:35 pm    Post subject: Reply with quote

MWT,

If you have no allergies, and none of the classic allergy symptoms in response to eating, then there may be no benefit to taking an antihistamine. Antihistamines are primarily helpful for those who have a history of allergies, or those who have symptoms soon (or immediately) after eating. And in some cases, antihistamines can be helpful when symptoms begin to return when weaning off budesonide. But they are not helpful for everyone.

Weaning off budesonide seems to be most successful when it is done very, very slowly. After reducing the dose to 1 capsule (3 mg) per day, some members here stay on that dose for 2 weeks, while others continue for up to 4 weeks. And they follow the same general pattern as they continue to lower the dose, to 1 capsule every other day, then 1 every third day, and some go to 1 every fourth day. Others continue to taper to 5 or even 6 day intervals, especially if they have had problems withdrawing from budesonide successfully in the past. We all have different responses to medications and healing progress, so as Gabes says, we have to kind of listen to what our body is telling us, and modify our treatment program accordingly, as needed. In general, slower is better, but there's no way to be sure what is optimal in our own case.

In general, topical magnesium is just as effective as oral magnesium, and usually much safer while we are still recovering. Magnesium glycinate (chelated magnesium) is the safest form to take (the least likely to cause diarrhea in larger doses).

If you are unable to successfully maintain remission while weaning off budesonide, then it might be helpful to order EnteroLab tests for the foods that you are still eating (for which tests are available), which appear to be eggs, and foods in the C1 test panel. If you are already avoiding gluten, dairy, and soy, then eggs are the only food left in the A1 panel of tests that you are not already avoiding.

I hope that some of this is helpful.

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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mwt
Little Blue Penguin
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Food Intolerances : Gluten, dairy, sugar, soy

PostPosted: Thu Feb 25, 2016 8:53 pm    Post subject: Reply with quote

Thank you for your response. Could you explain the need for magnesium with Celiac and LC? I would be too afraid to take the oral supplement because of risk of diarrhea. I do have magnesium topical oil and lotion. Should I use this topical oil/lotion daily?

Somewhere I read that taking antihistamine with tapering Budesonide increases chance of remission. Did I misunderstand? Does it have something to do with Mast Cells? It there a test to determine if Mast Cells are activated in my LC?
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tex
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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: Thu Feb 25, 2016 9:44 pm    Post subject: Reply with quote

Daily is a good, but multiple times per day is better. Here is a copy of a post I made in response to some else's question about treating osteoporosis earlier today:

Tex wrote:
The reason why so many people develop osteoporosis is because most people have a magnesium deficiency and/or a vitamin D deficiency. If you have plenty of magnesium available in your body, and plenty of vitamin D in circulation, you should have no problem reversing an osteoporosis problem.

Osteoporosis is a known side effect of gluten sensitivity and IBDs. Why? Because untreated gluten sensitivity causes a severe malabsorption problem, making it impossible to absorb enough magnesium and vitamin D unless both are supplemented heavily. IBDs also deplete both magnesium and vitamin D because of additional malabsorption issues caused by additional food sensitivities. And the most popular medical treatment for IBDs involves the use of a corticosteroid. Again, corticosteroids rapidly deplete both magnesium and vitamin D.

That's why so many people have an osteoporosis problem, and it's why plenty of supplemental magnesium and vitamin D will reverse the problem.

I definitely agree with you that the bisphosphonates prescribed by doctors to treat osteoporosis should be illegal. Like PPIs, they are iatrogenic drugs that just bring more repeat business for the medical profession, at the expense of their patients' health.

But you won't see many mainstream doctors prescribing magnesium (or enough vitamin D to actually get the job done), because they are trained to dispense drugs, not dietary advice. They have virtually no training in nutrition or diet issues.

You probably have enough calcium in your diet already, but if you decide to take a calcium supplement, be sure that you take it in a 1:1 ratio with magnesium, otherwise you can end up with way too much calcium in circulation which can have adverse health effects.


As I mentioned in my earlier post, antihistamines can be helpful for some individuals, especially if any of the symptoms of an allergy-type reaction are present. There are no tests to directly detect mast cell activity. A tryptase test can be used to detect mast cell activity during a major reaction (because tryptase enzyme is also released when histamine is released during a mast cell event), provided that a blood sample is drawn within a few hours of the peak of the reaction. A mast cell reaction typically peaks within about 2 hours after it is initially triggered, and after that tryptase levels fade relatively rapidly.

Here are some links that lead to short articles that you may find to be helpful if you are concerned that you may have mast cell issues associated with your MC, and there are links to references in the articles that provide additional information:

What are mast cells?

How are mast cells associated with microscopic colitis?

How do I know if mast cells are causing problems for me?

How are mast cell issues treated?

You're very welcome,
Tex
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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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Gabes-Apg
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Location: Hunter Valley NSW Australia

PostPosted: Thu Feb 25, 2016 10:00 pm    Post subject: Reply with quote

Over in the main message board section there are quite a few recent discussions about why Magnesium is important for anybody, even more so for anybody with health issues etc

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=22035

if you are worried about excess histamine this article and discussion will be interesting
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=21968

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=20099
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"Anything that contradicts experience and logic should be abandoned"
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skp
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2017 Sep 25 - 12:56 PM


Food Intolerances : Gluten, dairy, eggs, soy. Diagnosed LC Jan, 2017. Chronic Hives ,an AI, Jan 2014
Location: North Carolina

PostPosted: Thu Jan 26, 2017 2:42 pm    Post subject: Reply with quote

Another newbie to this site. I have been reading advice but hadn't jumped in until now. I was diagnosed on 1/9/17 with LC. I had been having diarrhea and then cramping for just a few weeks prior. LC is my second autoimmune disorder as I have had chronic urticaria (hives) for three years which is well under control with medications. It was horrible!

I am on Budesonide and have followed a strict diet free of gluten, dairy and eggs. I eat soft foods, low fiber and lots of bone broth with some chicken, some smoothies. My diarrhea is gone but I still have slight cramping now and then. I am also on Prilosec for GERD. My symptoms of that began shortly before the diarrhea with mild upper abdominal pain and an unpleasant taste in my mouth. Both are now gone but I do wish that eventually I could stop taking Prilosec. I believe it does contain magnesium so I assume I needn't take more of that right now. I am taking close to 7000 mg of Vitamin D, an increase from the 4500 mg I had been taking before my diagnosis. I take an ample amount of calcium and also take Vitamin B12, a daily vitamin, Omega 3 and CoQ 10.

I haven't done a stool test yet, as many of you recommend but am seriously thinking about it.

Questions:
1. Tex, where may I buy your book?
2. How soon can I eat well cooked vegetables? I used to eat lots of roasted vegetables and feel I am now missing out on the nutritional value of those.
3. What role do probiotics play with MC?

Any advice is greatly appreciated.
Skp
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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: Thu Jan 26, 2017 2:59 pm    Post subject: Reply with quote

Hi there Skp!
welcome to our group (our family) and sympathies that you had to find us.


Quote:
Questions:
1. Tex, where may I buy your book?
2. How soon can I eat well cooked vegetables? I used to eat lots of roasted vegetables and feel I am now missing out on the nutritional value of those.
3. What role do probiotics play with MC?


1. there is a link at the top right hand corner of this web page to buy the book - it is available on amazon

2. 1 or 2 well cooked vegetables now is ok.

3. MC is not the same as other IBD's. our experience to date is that when you are inflammed, probiotics can cause more chaos than benefit. once inflammation is vastly reduced and some healing has happened, some member tolerate probiotics ok.


our strong suggestion is that in this early stages of healing to only have Vit D3 and magnesium.
so far as having enough magnesium, with the meds you are taking, and that you were taking calcium, you need at least 600mg elemental magnesium per day. If you have been deficient for a while you may need more than this to correct the deficiency - the safest way to do this is using small amounts of oral magnesium along with topical magnesium. epsom salt foot soaks or baths are a good starting point.

once you build up the Vit D3 levels and magnesium levels (4-6 weeks) you should be able to reduce the Prilosec for GERD.
there are some good options like H2 blockers that can help this process.

hope this helps
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Gabes Ryan

"Anything that contradicts experience and logic should be abandoned"
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tex
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2017 Sep 25 - 12:56 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: Thu Jan 26, 2017 4:48 pm    Post subject: Reply with quote

Hi SkP,

Welcome to our Internet family. You seem to be on the right track for recovery (though I agree with the suggestions that Gabes made), but please reconsider your magnesium situation. PPIs are bad news for long-term health. Have you read this warning by the FDA about PPIs? This is only the last in a long series of warnings about PPIs that doctors continue to ignore. The entire alert is very informative, but please note this quote from the very first paragraph of the notice (the red emphasis is mine):

Quote:
[3-2-2011] The U.S. Food and Drug Administration (FDA) is informing the public that prescription proton pump inhibitor (PPI) drugs may cause low serum magnesium levels (hypomagnesemia) if taken for prolonged periods of time (in most cases, longer than one year). In approximately one-quarter of the cases reviewed, magnesium supplementation alone did not improve low serum magnesium levels and the PPI had to be discontinued.


If you read the entire notice you will see that some patients develop this problem in less than 3 months after they start to take a PPI. I wasn't aware that Prilosec contains magnesium, but even if it does I seriously doubt that the magnesium it contains will have any effect on the problems that PPIs cause. Why? Because any magnesium taken with or soon after a PPI will be wasted, not absorbed. PPIs prevent the absorption of magnesium.

http://www.fda.gov/Drugs/DrugSafety/ucm245011.htm

For more information on the health risks of PPIs, and how to wean off them, please read the article at the following link from the Microscopic Colitis Foundation website:

http://www.microscopiccolitisfoundation.org/upl...evised_112716.pdf

I hope that some of this is helpful. Again, welcome aboard, and please feel free to ask anything.

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

PostPosted: Thu Jan 26, 2017 4:49 pm    Post subject: Reply with quote

Just my opinion......most will not need antihistamine when weaning off of budesonide particularly if they are GF, DF and maybe SF and do a very long slow taper off of budesonide.

For those that have attempted several times to get off of budesonide despite being GF, DF and SF and long slow taper and are reattempting to get off of budesonide THEN ANTIHISTAMINE MAY BE HELPFUL to reduce mast cell activity that can cause reflare.

There was a recent thread from another user who had tried multiple times to get off of budesonide and was having problems. The antihistamine will hopefully help her but may not be necessary for most.

When I got off of budesonide I did notice increased mast cell activity (runny nose thing) but neither myself nor a couple of other members who got off of budesonide were using the antihistamines when we got off of the drug.

Antihistamines are a good tool in the tool box for subsequent attempts to get off of budesoinide for those who have tried previously and been unsuccessful.
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mwt
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Food Intolerances : Gluten, dairy, sugar, soy

PostPosted: Mon Apr 17, 2017 9:24 pm    Post subject: Follow up to Tapering Off Of Budesonide...WHAT NOW?? Reply with quote

I have been taking Budesonide for almost 2 years and every time I tried to taper down and get off of Budesonide completely I would have a relapse with D increasing in usually less than one month. After researching this board and asking questions here I tried tapering while taking 1 Claritin Reditabs in the morning and 1/2 Benydrl at bedtime. Within less than 1 week my BMs began to become more solid and NOW 9 weeks later I am having normal...YES...NORMAL BMs!
I also stopped all supplements except Vit D and Culturelle probiotic (I was taking VSL #3 probiotic before 10 weeks ago which I don't think I was tolerating but I didn't know that until now!).
I tapered the Budesonide to one 3 mg capsule 2 days per week then 1 day per week for 2 weeks and now none for 11 days.
I really feel that the difference was the Antihistimines daily. I have no "obvious" allergy symptoms so I don't usually take antihistimines.
My diet is GF, SF, Dairy Free, Grain Free and Soy Free, No raw vegetables...all over cooked.

My Question is WHAT NOW? How and when do I stop Antihistimines? What about diet, should I stay on this very restricted diet?
How can I find out more about my reactions to histamines and Mast Cell issues? It seems that I would assume that I have problems with mast
cell activation so I would like to know how to address this?

Thank you to all of you involved in this forum! It has truly saved my life!
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Gabes-Apg
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PostPosted: Mon Apr 17, 2017 9:46 pm    Post subject: Reply with quote

that is great news that you have gotten off the budesonide and having normal BM's great news.

Nutrient wise, we have found that magnesium and B6 are key to managing histamine/allergy/mast cell issues.
There are published studies confirming this.

What Now
1. use good quality magnesium
Orally either Doctors Best Magnesium Glycinate or the Dr Dean ReMag Product.
topically - Epsom salt foots soaks and/or topical magnesium oil/lotion
(or you can use oral and topical)

2. B6 - best to have the active form which is called P5P.
two options take just P5P - thorne P5P (available from iherb) is MC safe
or take active B vitamins in a combo of B6, B9, B12 in their active forms as Thorne Methyl Guard (also from iHerb)

resolving Magnesium deficiency and P5P deficiency resolved LIFE LONG allergy issues for me
up until age 45 I could not walk into a house with a cat, without having hives, runny nose, asthma etc, now I can pat them - it was the same for horses, could not sit beside someone who had horse hair on their clothes without getting asthma etc, now I can pat them.
if I maintain good Magnesium and P5P intake I do not have to take any antihistamine medication. (I took it daily for over 2 years 3-5 years ago)

There are others that have had vast improvement with allergy issues since having good quality magnesium and P5P
here is a link to a recent post by Erica
http://perskyfarms.com/phpBB2/viewtopic.php?t=21065

we also have an area in the forum about Mast Cells
http://perskyfarms.com/phpBB2/viewforum.php?f=74

hope this helps
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Gabes Ryan

"Anything that contradicts experience and logic should be abandoned"
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tex
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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: Tue Apr 18, 2017 9:00 am    Post subject: Reply with quote

mwt,

For information on mast cells, read the links in the sticky at the last link that Gabes listed, http://perskyfarms.com/phpBB2/viewforum.php?f=74 .

Here are the links that you need to read:

What are mast cells?

How are mast cells associated with microscopic colitis?

How do I know if mast cells are causing problems for me?

How are mast cell issues treated?

Usually taking antihistamines for several weeks is sufficient, but you're not completely out of the woods with weaning off budesonide until about 8 weeks total have passed.

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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