Why did I have a relapse today?

[bttory]

Hi all,

I was hoping you could share any insight on why I may have had a relapse today (well, last night into today). As background, I started entocourt in February, 9mg. I had weaned myself down to 6mg for the last 3 months or so. And, during the last 2 weeks, I went 4 or 5 days in a row at 6mg, then 1 day with 3mg, then another 4 or 5 days at 6mg. I eat a very strict diet (only plain chicken, plain turkey, winter squash (steamed), cream of rice, sweet potatoes, and bananas), and was doing well on that diet.

I'm trying to figure out what caused my relapse, so I can avoid it. Do you think any of these "out of the ordinary" events could be the reason for the relapse:

1. I had a single white potato (a nightshade) the day before. I don't eat nightshades because I have other autoimmune issues (celic and another yet-to-be-diagnosed condition).

2. I had a 3mg entocourt day the day before the relapse (although I felt fine during the day, and had a handful of other 3mg days before the relapse with no issue).

3. I made a mistake at work that was stressful (but really, not as stressful as other events that have happened at work recently).

I know you won't be able to tell me for sure, but I was hoping with the collective wisdom and experience you may be able to give your opinion. I was doing so well and want to be sure I avoid the triggering event in the future. Thanks for reading this, and all of the help you've provided me thus far. This is a fantastic group and I wouldn't have made the progress I have without you.

Thanks.

[tex]

Hi,

When weaning off Entocort, any remaining food sensitivities in the diet can trigger symptoms as the budesonide dose is reduced. And of course, stress is always a wild card that can amplify diet problems, or even overrule the best of recovery plans.

If I were in that situation I would avoid chicken (to maximize my chances of recovery), because a significant number of members here react to chicken. Far fewer react to rice, but if avoiding chicken doesn't bring any improvement, I would try avoiding rice.

Also, if you are not able to regain remission in a day or so, it may be necessary to increase the Entocort to 9 mg per day for a few days, to regain control.

I hope that some of this is helpful.

Tex

[Gabes-Apg]

for me it generally is not one thing but a combo of little things that can cause issues

in your case, any new ingredient no matter what it is, if you have not eaten it for a while, will cause a change to your poop when you have it.
we always recommend for new ingredients to;
- have small amount no bigger than 1/2 cup serving, wait 24 hours and have another small serve, wait 24 hours and then have another small serve. if after the third serving there is no reaction then the ingredient is ok.

stress has been and still is a big trigger for me. I am coming up to 7 years post diagnosis and I still have changes to my poop, (softer, more urgency etc) after stressful days.

please be mindful that your BM's wont be perfect every day, it is semi normal to have slight variations and changes, depending on what you ate, was there any stress, sleep quality, etc etc it is more of a concern if very soft motions and urgency continue for more than 3 days.

hope this helps

[bttory]

Hi,

When weaning off Entocort, any remaining food sensitivities in the diet can trigger symptoms as the budesonide dose is reduced. And of course, stress is always a wild card that can amplify diet problems, or even overrule the best of recovery plans.

If I were in that situation I would avoid chicken (to maximize my chances of recovery), because a significant number of members here react to chicken. Far fewer react to rice, but if avoiding chicken doesn't bring any improvement, I would try avoiding rice.

Also, if you are not able to regain remission in a day or so, it may be necessary to increase the Entocort to 9 mg per day for a few days, to regain control.

I hope that some of this is helpful.

Tex

Thank you - yes, very helpful. I never would've thought to eliminate chicken. I've had it for months with no issues - the same with rice. That's why I assumed it was the potato. I'll give the chicken removal a try. And if need be I'll up my entocourt dosage. Thanks for the insight.

[bttory]

for me it generally is not one thing but a combo of little things that can cause issues

in your case, any new ingredient no matter what it is, if you have not eaten it for a while, will cause a change to your poop when you have it.
we always recommend for new ingredients to;
- have small amount no bigger than 1/2 cup serving, wait 24 hours and have another small serve, wait 24 hours and then have another small serve. if after the third serving there is no reaction then the ingredient is ok.

stress has been and still is a big trigger for me. I am coming up to 7 years post diagnosis and I still have changes to my poop, (softer, more urgency etc) after stressful days.

please be mindful that your BM's wont be perfect every day, it is semi normal to have slight variations and changes, depending on what you ate, was there any stress, sleep quality, etc etc it is more of a concern if very soft motions and urgency continue for more than 3 days.

hope this helps

Thanks! I do have changes in my BMs from time to time, but this was a dramatic change (entirely watery, gurgling stomach, frequent, urgency and some pain). It's like it was before I was diagnosed). I'll be more careful with new food (like the potato)! Thanks for your advice.

[brandy]

Hi B,

I was an entocort user and there were foods that I could tolerate at 9 mg that I could not tolerate at 3 mg or 0 mg.

Is your household GF? Only reason I ask is that Mom has celiac and I made steaks, squash and potatos at Mom's house in her kitchen. This is a meal I've made 100's of times, i.e. very safe for me. The next day I had WD, kind of extreme.
I think there was gluten on the dishes or cookwear as Dad is not GF. This event was an eye opener for me.

It sounds like you are doing a good job with your taper.

[Gabes-Apg]

i agree with Tex about the chicken, I think the reason why many MC'ers react to chicken is due to what the chicken is being fed (wheat GMO corn, soy etc)

swapping across to things like grass fed meats or wild game, ie lamb, venison, turkey etc will help.

[bttory]

Hi B,

I was an entocort user and there were foods that I could tolerate at 9 mg that I could not tolerate at 3 mg or 0 mg.

Is your household GF? Only reason I ask is that Mom has celiac and I made steaks, squash and potatos at Mom's house in her kitchen. This is a meal I've made 100's of times, i.e. very safe for me. The next day I had WD, kind of extreme.
I think there was gluten on the dishes or cookwear as Dad is not GF. This event was an eye opener for me.

It sounds like you are doing a good job with your taper.

Hi Brandy,

Thanks for chiming in. Helpful to know your experiences with different food and entocort. My house is not GF. I wish it was. My wife and 2 young children are not GF. I am very concerned about cross contamination, and you make a very good point. I'll revisit making our house as GF as possible, and be really careful. The good news is I have my own set of GF cookware, etc. The bad new is gluten is in our dishwasher, likely on the counters, etc.

And thanks for the kind words about the taper. It's really hard and I'm never quite sure how to do it. I appreciate the support.

[bttory]

i agree with Tex about the chicken, I think the reason why many MC'ers react to chicken is due to what the chicken is being fed (wheat GMO corn, soy etc)

swapping across to things like grass fed meats or wild game, ie lamb, venison, turkey etc will help.

Good point. I never thought of that. There is grass fed beef available where I live, but I don't eat much beef. I eat a lot of turkey; I'll stick with that for a while. And, I wish that there was wild game available in my area (at a decent price), but to my knowledge, there is not. Maybe I'll have to start hunting! Thanks again for your help.

[tex]

Hi Brandy,

Thanks for chiming in. Helpful to know your experiences with different food and entocort. My house is not GF. I wish it was. My wife and 2 young children are not GF. I am very concerned about cross contamination, and you make a very good point. I'll revisit making our house as GF as possible, and be really careful. The good news is I have my own set of GF cookware, etc. The bad new is gluten is in our dishwasher, likely on the counters, etc.

I agree with Brandy. This is a huge problem, and it's almost impossible to be careful enough to avoid cross-contamination if there are bags of wheat flour in the house. Wheat flour is by far the most difficult product to contend with. Every time a bag is opened and flour is poured or dipped, tiny particles of flour fill the air and drift around to settle everywhere. I've had the same problem myself. Other processed foods that contain gluten are not nearly as difficult to deal with as flour.

Without drifting flour to contend with, having your own dedicated counter space can help, and having your own cookware is a big help. As you're probably well aware, utensils made of porous materials such as wooden spoons or bowls, cutting boards, etc., should never be shared.

As Gabes mentioned, lamb is a safe source of protein. Virtually no one here reacts to lamb.

Tex

[bttory]

Hi Brandy,

Thanks for chiming in. Helpful to know your experiences with different food and entocort. My house is not GF. I wish it was. My wife and 2 young children are not GF. I am very concerned about cross contamination, and you make a very good point. I'll revisit making our house as GF as possible, and be really careful. The good news is I have my own set of GF cookware, etc. The bad new is gluten is in our dishwasher, likely on the counters, etc.

I agree with Brandy. This is a huge problem, and it's almost impossible to be careful enough to avoid cross-contamination if there are bags of wheat flour in the house. Wheat flour is by far the most difficult product to contend with. Every time a bag is opened and flour is poured or dipped, tiny particles of flour fill the air and drift around to settle everywhere. I've had the same problem myself. Other processed foods that contain gluten are not nearly as difficult to deal with as flour.

Without drifting flour to contend with, having your own dedicated counter space can help, and having your own cookware is a big help. As you're probably well aware, utensils made of porous materials such as wooden spoons or bowls, cutting boards, etc., should never be shared.

As Gabes mentioned, lamb is a safe source of protein. Virtually no one here reacts to lamb.

Tex

Thanks. Tough to ask the whole family to go gluten free (especially with very young kids) but I agree that is the best way to go. It might be time. I haven had lamb in years; I'll have to try. Does every one do ok with ground turkey? I've been making parties out of that.

[Gabes-Apg]

Depends on the ingredients/brand of the ground turkey..
if the ingredient list includes rosemary extract - then this can have small amount of soy in it

in regard to your family, as you have MC then there is a high probability that your children have the genes that make the more susceptible to IBD's and ongoing inflammation from things like wheat and dairy. if you want to optimise their wellness later in life, gluten free as early as possible is good foundation.

these articles may help you (and your family) embrace that idea
http://kellybroganmd.com/two-foods-may-sabotage-brain/

this 30min program is great for family members to understand why we struggle to digest wheat and why it increases risk of health issues
http://www.abc.net.au/catalyst/stories/4358631.htm

[tex]

BT,

if you want to optimise their wellness later in life, gluten free as early as possible is good foundation.

While I agree that everyone should avoid gluten, for the benefit of their long-term health, there's a caveat here to keep in mind. If we are predisposed to be sensitive to gluten, in other words, if we have the genes that predispose us to gluten sensitivity (and approximately 96 % of the general population do), in many cases, eliminating gluten from the diet will accelerate our immune system's sensitivity to it. Many people (probably most people) have developed some degree of sensitivity to gluten, but they have no clinical symptoms because they have been eating it all their life, and so their immune system has developed a tolerance for it. Once gluten has been eliminated from the diet for a while however, future exposures may trigger a reaction.

This may seem to be a paradox, but it's similar to oral immunotherapy treatments where allergists treat allergies by exposing the patient to tiny but increasing doses of an allergen until their immune system develops a tolerance to it so that a normal exposure does not trigger a reaction. However, the catch to this therapy is that the patient has to continue regular (preferably daily) exposures to the allergen, or she or he will lose tolerance and begin to react again. As long as they continue to ingest a maintenance dose of the allergen, they are fine, presumably for the rest of their life. But if they stop the maintenance therapy, they lose their tolerance. Many people have induced tolerance to gluten, so a decision to eliminate it from the diet may become a permanent necessity, by default. So GF is not only a way of life, but an irreversible choice, in most cases.

I don't want to adversely affect your family's decision, but I thought that you should be aware of this issue with gluten. It's bad stuff, because the human digestive system was not designed to handle it. We can trick our immune system into tolerating it, but that's kind of like holding a tiger by the tail — if we make a mistake, we're in bad trouble.

I hope I haven't just confused the issue.

Tex