"D" again - How do I get back to where I was?

birdlover3 · Post by **birdlover3** » Sat May 25, 2013 7:18 am

I'm going through a flare of "D" for about a week. I'm still GF but what do I do to get myself back to where I was? I was doing great after the Budesonide (for about 2-3 months) but all of a sudden I'm back to "D".

Other than keeping on with GF, is there something I should eat/do to get myself back? IS there any point to go back to my family doc at this point?

I'm concerned because I am now down to 107 pounds (doing ALOT of activity) and I don't think I can afford to lose more weight as I've lost about a pound a week now for several weeks and am getting quite 'boney'. I'm NOT hungry but every meal I eat seems to trigger the "D".

Please help as I am getting a bit concerned. All advice is welcome as to what you did to get back on track. Thanks, Barb

Deb · Post by **Deb** » Sat May 25, 2013 7:36 am

Barb, what a lot of people have found here is that after your body no longer has to have a battle with gluten it seems to seek out other intolerances. Most likely ones are dairy, soy and/or eggs. The easiest way to determine them is through Enterolab testing. It might be quickest for you to eliminate all the above major allergens and see what happens. Deb

Edited to add: I just noticed you had done some labs. Was it Enterolab?

Gabes-Apg · Post by **Gabes-Apg** » Sat May 25, 2013 7:42 am

As per the experience of many before you, once you eliminate a major trigger, an ingredient that may have only been a mild trigger now becomes a major trigger.
A lot of us had Roller coaster ride of eliminate ingredient, start to feel good, bam! Symptoms.
Eliminate dairy or soy, feel good and then a few weeks or couple of months later bam! Symptoms.

This pattern can occur until all triggers re removed.
Maybe not the news you wanted to hear.... Albeit the reality.

These moments are not set backs, they are learnings....
It could be dairy, soy, eggs, nitrates/sulphides. Or it could be mast cell/histamine.

Hope this helps

Mimi · Post by **Mimi** » Sat May 25, 2013 9:30 am

Barb - Sorry you are having such a bad time. I have had the big "D" almost everyday since my diagnosis 3 years ago. The only prescription med that I take is Colestipol since I also have bile issues. Last weekend, out of desperation, my husband suggested I try Immodium. My "D" is gone today. My question would be how long can you take this and are there side effects? I know some of the folks on this site say that they take Pepto everyday. Immodium is not bismouth like Pepto and Kaopectate so what has made it work for me. I keep thinking the bubble is going to burst while I am out on the walking trail - you never know when it will hit and be uncontrollable. Have you tried this? It seems the doctors only want to prescribe prescription meds and they have not worked well for me and seem to offer a lot of side effects. Suggestions anyone??

Mimi

birdlover3 · Post by **birdlover3** » Sat May 25, 2013 9:44 am

Deb wrote:Barb, what a lot of people have found here is that after your body no longer has to have a battle with gluten it seems to seek out other intolerances. Most likely ones are dairy, soy and/or eggs. The easiest way to determine them is through Enterolab testing. It might be quickest for you to eliminate all the above major allergens and see what happens. Deb

Edited to add: I just noticed you had done some labs. Was it Enterolab?

Yes, Deb, it was Enterlab testing and all other things were fine. Gluten and oats is the only thing that showed up.

birdlover3 · Post by **birdlover3** » Sat May 25, 2013 9:47 am

Mimi wrote:Barb - Sorry you are having such a bad time. I have had the big "D" almost everyday since my diagnosis 3 years ago. The only prescription med that I take is Colestipol since I also have bile issues. Last weekend, out of desperation, my husband suggested I try Immodium. My "D" is gone today. My question would be how long can you take this and are there side effects? I know some of the folks on this site say that they take Pepto everyday. Immodium is not bismouth like Pepto and Kaopectate so what has made it work for me. I keep thinking the bubble is going to burst while I am out on the walking trail - you never know when it will hit and be uncontrollable. Have you tried this? It seems the doctors only want to prescribe prescription meds and they have not worked well for me and seem to offer a lot of side effects. Suggestions anyone??

Mimi

Yes, I'm taking Immodium. it helps for a time, but next time I eat a meal, it usually has the "D" again. So it appears to be a bandaid. I've had Enterlab tests so they should be reliable.

JLH · Post by **JLH** » Sat May 25, 2013 11:01 am

YES, Imodium seems to just delay the event, not stop it.

Gabes-Apg · Post by **Gabes-Apg** » Sat May 25, 2013 1:03 pm

Barb
if it isn't dairy or soy,. then there must be another type of trigger, maybe not food related.

have you started any new supplements?
have you started a new brand of an ingredient?
have you read the section on mast cells/histamines?

Post by **tex** » Sat May 25, 2013 3:24 pm

Mimi wrote:My "D" is gone today. My question would be how long can you take this and are there side effects?

You can take Imodium indefinitely. It's one of the safest drugs available for slowing motility. That said, it's best to use it only as needed, lest the body slowly develop a tolerance for it, causing it to become less effective. So far though, that seems to be a remote possibility, based on everyone's experiences with it. I see few complaints about side effects in member posts about it. I seem to be one of the very few who have experienced any side effects from it. It causes dizziness for me, even at just half a pill per day, so I can't use it. Fortunately, I don't need to use it.

That said, as Joan pointed out, remember that it does nothing to suppress the inflammation that causes MC. Like most drugs, it only treats the symptoms. To stop generating the inflammation that's associated with MC, we have to remove from our diet, the foods that are causing the problem.

Tex

carolm · Post by **carolm** » Sat May 25, 2013 5:41 pm

Barb, I noticed an increase in symptoms when my seasonal allergies started this spring. It seems to have eased up now. I take Claritin and did my best to avoid any excessive exposure to allergens. Just a thought. I don't know if you have other allergies but they do play a role.

I like what Gabes said-- have you started any new supplements, etc? I was ready to blame soy until you said you were tested, because I think soy is evil. At least it is for me.

I'm sorry this has cropped up for you.

Carol

birdlover3 · Post by **birdlover3** » Sat May 25, 2013 6:44 pm

Gabes-Apg wrote:Barb
if it isn't dairy or soy,. then there must be another type of trigger, maybe not food related.

have you started any new supplements?
have you started a new brand of an ingredient?
have you read the section on mast cells/histamines?

I did start a new multi-vitamin and stopped it the other day thinking maybe that had something to do with it. I looked at the ingredients. It says "microcrystalline cellulose, croscarmellose sodium, stearic acid, magnesium stearate, silca, and pharmachetical glaze." Are any of those a trigger? Maybe the madnesium stearate? If so, will stopping it make my "D" clear up?

I had eaten one day a GF granola with no oats but that was only 1 day and I stopped as soon as the "D" started.

I do have the book. Mast cell/histamines...I can re-read it. What will that tell me I should do?

Thanks for all advice. Barb

Gabes-Apg · Post by **Gabes-Apg** » Sat May 25, 2013 6:58 pm

Since Dx, and even now that the MC is in remission, I still now always react to new foods, new supplements, new meds.
(I have 1x MC mud BM about 8 - 14 hours post ingesting the new item, and generally after that the Bm's return to my normal)

I always start with small doses and work up to full serve/dose.
I would never have two new things in the one week.

you may be reacting to one of the ingredients in the multi, we are all different.

the mast cell/histamine thing is pretty simple either avoid the items that are triggering them, or take anti-histamines
if there are elements that you cant avoid then the only option is to take antihistamines...

brandy · Post by **brandy** » Sun May 26, 2013 6:13 am

Hi Barb,

How long were you on entocort? We're at high risk of relapse during the 8 weeks following a 3 month stint of entocort.

During mini flares i do the following: eliminate all supplements, use my meditation tape every 2 hours, go back to eating my safe 4 foods diet, chicken broth, meat rice and overcooked veggies.

Also I found clariten ready tabs has kicked me out of flares.

If u decide to go back on entocort it may take a stay of 4-5-6-7 months or so. At low end of taper think 4-6 weeks 1 pilll every other day, 4-6 weeks 1 pill every third day. During the 8-10 weeks after last pill think minumum supplements (don't add anything new) stay with your extremely safe foods with an emphasis no processed foods.

You may not have to go back on entocort if you eliminate supplements, go back to your safe unprocessed foods, use claritan ready tabs, and meditate. It can take me a week or so to kick out of a flare.

Best wishes, brandy

birdlover3 · Post by **birdlover3** » Sun May 26, 2013 12:00 pm

Gabes-Apg wrote:
the mast cell/histamine thing is pretty simple either avoid the items that are triggering them

How would I know what is causing the cell/histamine problem?

birdlover3 · Post by **birdlover3** » Sun May 26, 2013 12:06 pm

brandy wrote:Hi Barb,

How long were you on entocort? We're at high risk of relapse during the 8 weeks following a 3 month stint of entocort.

During mini flares i do the following: eliminate all supplements, use my meditation tape every 2 hours, go back to eating my safe 4 foods diet, chicken broth, meat rice and overcooked veggies.

Also I found clariten ready tabs has kicked me out of flares.

If u decide to go back on entocort it may take a stay of 4-5-6-7 months or so. At low end of taper think 4-6 weeks 1 pilll every other day, 4-6 weeks 1 pill every third day. During the 8-10 weeks after last pill think minumum supplements (don't add anything new) stay with your extremely safe foods with an emphasis no processed foods.

You may not have to go back on entocort if you eliminate supplements, go back to your safe unprocessed foods, use claritan ready tabs, and meditate. It can take me a week or so to kick out of a flare.

Best wishes, brandy

I was on Endocort the 'usual' amount of time...can't remember exactly. It was like 3 pills a day for 3 weeks, then 2 pills for 3 weeks, then 1 pill for 3 weeks if I remember right. I hope I can kick this without going back on that.

I have stopped my vitamin supplement. I had bought a new brand. For now I think I'll just stay completely off of it. Then go back to the other brand when I get back to normal.

Thanks for telling me about the chicken broth, etc. Do you BUY the chicken broth? Is it GF? Also you mentioned "Claratin ready tabs". Is that different from just "Claratin"???? Please advise and I'll try that.