GF for 1 mo. only - now D is back

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garina
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GF for 1 mo. only - now D is back

Post by garina »

I'm so confused and scared, because I don't know where to go from here. I was hoping going GF would help, but my D is back full force, actually worse, and I am wondering what to do.

When I started the GF diet, things really did get better, but that seems to be gone now. I was wondering if I started on Pepto Bismol, a few tablets daily, would that help, or do you have to do the 8 tabs daily? I'm reluctant to do 8 on a daily basis, as I've never taken it before. And will that help the cramping?
]
We are scheduled for a cruise the middle of this month, and if it wasn't booked, I would want to cancel due to this flare, but it involves my husband and daughter and son-in-law, and in my heart, I really would like to go, so somehow I'm going to have to manage.

I had been given Bentyl, 20 mg tabs., by my PCP long before I was diagnosed with MC due to so much cramping/bloating, and she said it would help calm down my digestive system. I had never taken it, due to so many side effects after reading about it on the internet, but is there anyone here who has taken Bentyl, and did it quiet down the cramping? The cramping is so bad, it's hard to leave the house, along with the D.

I know I need to do something, Pepto or something for the cramping, but I just need advice from someone. My GI didn't offer any help, and my PCP hadn't heard of MC before and still says I must have IBS, even with the pathology report from my GI. Both are very nice people but not very helpful with this disease.

I also need to stop taking my baby aspirin every day (have taken it for years), but don't know if I need a substitute for that. I also read on the internet that if you stop taking a baby aspirin after taking it for years cold turkey that you could have a heart attack. Well, that really scared me. So, now I don't know what to do. I do know aspirin is bad for all MC people.

With D so often sometimes, I don't know if any food is being digested, and all this is a worry. Even with going GF, D continues now, and it is very discouraging.

I am grateful for any help.

garina
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tex
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Post by tex »

Garina,

In virtually every case, where the GF diet has brought initial benefits, but then begins to lose control, the problem is a second food sensitivity which the immune system identifies, after the initial high level of gluten antibodies begins to die down. The immune system, (according to my theory), can only concentrate on one major "allergen" at a time, and since gluten, (actually, gliadin), antibodies are the most persistent, (they have a very long half-life, compared with other food sensitivities), gliadin antibodies always dominate the attention of the immune system, until their level declines, at which point antibodies for the next allergen in the hierarchy begin to dominate the immune system's resources. For most people, casein is the next allergen in line. If you are already avoiding casein, the soy is the next allergen in the hierarchy. After that, it may be yeast, egg, corn, or :shrug:

Pepto-Bismol won't hurt you, unless you're allergic to bismuth subsalicylate, or a dye or some other ingredient in the Pepto. It's considered to be a generally safe treatment. If you happen to be allergic to it, you'll know within a few days after you start taking it. If you don't want to take the full dose, you would have to determine the level that will still give you control. If you want to use a minimum dose, I would recommend doing what Sara did, start with a full dose, (or a reasonable percentage of a full dose), and then taper the dosage down, as you gain control.

Bentyl is actually a treatment for IBS, but it should help to suppress cramping - it's an antispasmotic, which works by blocking a chemical in smooth muscle tissue of the stomach and intestines, causing them to relax, thereby reducing cramping. Unfortunately, it also relaxes other smooth muscles, so I wouldn't recommend it, for example, if you are having problems with acid reflux, or GERD, because it can make the condition worse, by relaxing the lower esophageal sphincter. The heart is also comprised of smooth muscle, so if you have any coronary issues, you would need to discuss that with your doctor, also. I believe a few other members have used it in the past, with some success.

Regarding the baby aspirin, Bayer makes an enteric-coated version that's easier on the stomach, (since presumably it doesn't dissolve until it gets past the stomach), but of course that doesn't prevent it from being an NSAID risk. I took it for a year, (after my first TIA), without any problems. When I had my first TIA, I took two full-strength aspirins before going to the ER, and two days later, I passed some blood, so obviously, the dose matters. I have no idea if there is a coronary event risk associated with stopping the use of a daily aspirin. You might ask your PCP about Plavix, (clopidogrel). When I had my second TIA, the doctors moved me up the scale from baby aspirin to Plavix. It's an antiplatelet drug. It's a relatively expensive drug, compared with aspirin, (I think it's costing me roughly 6 bucks a pill), but I read somewhere that a generic version of clopidogrel may soon be available. Apparently the patent expires in November of this year.

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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Post by mbeezie »

Garina,

I had the same experience. I was GF for a month and had good results then D returned. I then went dairy free and the same thing happened . . . then soy free and the same thing again. The I did MRT and figured out the last of my sensitivities and have been not had bad D ever since. You may have multiple sensitivities:(

Mary Beth
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Post by sarkin »

Garina,

I'm so sorry - I had cramping too, and I know how draining and frightening it can be.

I hope you can work out a strategy to get you through this cruise - even if it's nothing but bananas and spring water and - one other safe thing. I am sure the cruise line will have experience with dietary concerns, so if you need them to provide you plain boiled chicken, I believe they will help you make sure the cruise is safe.

For me, the Pepto was soothing - I carry it everywhere now, just in case, but have not had to use it for some time. As far as the baby aspirin goes... I think you don't have to go cold turkey; you can start taking it every 36 hours instead of every 24, and gradually reduce it, to reduce the heart-attack risk. Probably, the greater risk now is your digestive upset, and once that's resolved through your dietary efforts, I believe your heart risk will be reduced, because the overall inflammation in your system will subside. I know that's easier said than done, and I truly sympathize with your anxiety.

I hope we can help you figure out a handful of safe foods for your regular diet, and of course for your cruise. And I truly hope the cramping subsides. Pepto can help with this, and is worth a try. I'm pulling for you - let us know how else we can help,

Sara
garina
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Post by garina »

Tex,

I had no idea how all this worked, but your explanation makes sense, so this morning, I started with total DF along with GF. I was trying somewhat to be DF but was not serious about it before. I will be now. I really want to get a handle on all this.

This AM, I started with Pepto Bismol. Quite large pills, but I got all 3 down! I'll try the 9 pills daily and see how it works. I would like to do what Sara did and taper down on some as time goes.

Today, I went out to get the enteric-coated Bayer baby aspirin you mentioned, until I see my doctor to see if I can quit it altogether. I was put on this baby aspirin years ago due to hypertension, but I've never had any other heart problems, so I'm thinking I may not need it.

I am in awe of your knowledge about this disease, and your replies are always right on, and I thank you very much.

Mary Beth,

I must be following the same pattern as you. My next step will be total DF, then, like you, SF. I did try to email the MRT person recommended for our area, but her email address was no longer valid. I will try to call her to see about MRT testing and the cost of all that. If I can't reach her, could I ask you for another name? Can MRT be done over the internet like EnteroLab?

Thanks for letting me know there is life after D. From here on, I will try to be more aware all the food sensitivities involved in getting well.

Sara,

Yes, I really do have to be on top of this D for our upcoming cruise. We have filled out the food sensitivity form and talked to the Travel Agent, and she said it would be taken care of. I will make a point of knowing where all the bathrooms are as a safety measure, also.

Tex mentioned I should try what you did with the Pepto Bismol, and I started this AM. I just bought 4 bottles. They only have 40 pills in one bottle, so in taking so many per day, that's a lot of bottles. I'm hoping to taper off eventually when the D gets better.

I already feel better just having a plan with the Pepto and Bayer enteric coated baby aspirin, and just knowing that GF will eventually work, but the other food sensitivities need to be dealt with, also. I will try taking the baby aspirin every 36 hours as I think that is a good idea.

Thanks so much, Sara, for helping. I wouldn't have known where to go if it were not for this very informative Forum. You, Tex and Mary Beth have made a difference in how I feel today. I'm grateful.

garina
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Post by sarkin »

Garina,

This group had been my lifeline, as well.

I hope this cheers you up - my blood pressure was up, just before I got really sick. Now it's rock-solid low/normal. Every day, every time of day. It's possible that getting the irritation in your system calmed down will benefit your hypertension as well, and then you can be less stressed about cutting down on the baby aspirin. We are all different... but here's hoping.

I found it easier to cut all 'suspect' foods at once. I just could not bear to go through that cycle of feeling better and backsliding. (And even so, there have been ups and downs - but much more steady in the ups department!) I think it's great your cruise folks are working with you - hopefully a GF/DF diet will enable you to enjoy the family time, and the cruise itself. (For me, cutting out eggs was beneficial... so maybe you don't have to do that, but don't center your meals around them 'just in case' - at least not on the cruise!)

I believe I cut down on the Pepto too quickly. I was taking 2, 4 times a day (so 8 instead of 9)... take your time. I still have it in my purse, but haven't needed it. Take a moment before you pack and think what other mind-calming things you can bring along... I bought those 'Cottonelle' flushable wipes; I might carry an extra pair of undies in my purse if I were feeling scared, and that would give me peace of mind... just whatever works for you. It could be a lavender-scented hankie - nothing to do with MC - as long as it gives you strength, security, or peace of mind.

I'm so glad you have a plan - and I hope you're feeling better quickly,

Sara
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Post by Gloria »

Hi Garina,

Also, bring some Imodium AD along on the trip if you can find it in the stores. It's become difficult to find in the last few months.

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Post by tex »

Garina,

I agree with Gloria, the original version of Imodium AD can come in very handy, if the D is not cooperating, and you need to be out and about. It will slow down motility, and help to avert any little "emergencies", by giving you more time. The problem with the generic versions, is that they all contain lactose, the last time I checked.

Hopefully you won't need these, because you should be doing much better by then, but if all else fails, the ultimate security "blanket" is adult diapers. I never had to resort to using them, (though I could have used them a few times before it occurred to me to buy some), but I kept some handy, just in case I ever absolutely had to be out and about, on a really bad day. A few members have found them to be - I started to say "life-savers", but obviously that's not accurate - let's just say that some members here have found them to be "dignity-savers", when the chips were down.

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.
garina
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Post by garina »

Sara,

What you said about your BP being up and better now with a GF diet definitely is a help. I will look forward to mine hopefully lowering to a more normal reading. Inflammation must be the cause of most every disease, and I never associated it with BP. I did make an appointment with my doctor about stopping the baby aspirin. The less drugs I can take, the better.

Something I recently read is using a different toaster. My husband loves bagels in the morning toasted, and I have used the same toaster to toast my GF bread. Tomorrow, a new toaster! Just for GF. I'm making lots of mistakes.

The pepto I'm taking is 3 at every meal. Today, is the second day. I hope for success. Oh yes, an extra pair of underwear is a good idea. Thanks, I will do that. I do feel this disease makes one anxious, and with me, nervous...

Thanks for your kind thoughts and helpful suggestions.

Gloria,

I just put Imodium AD on my to-buy list for our trip. Thanks.

Tex,

We do actually have some adult-absorbent items due to my husband's prostatectomy years ago, and now he has problems in the urinary area. I hope I don't need any, but they're handy just the same. I like your word "dignity-savers". <smile>

Thank you all.

garina
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Post by Martha »

Garina,

I have a cardboard sign that I always keep in my GF toaster that says "Gluten-free Only". Even though it's only my husband and me in the house, I don't want to make any mistakes. I take the sign out when I use the toaster, and put it right back in when I'm done toasting.

Love,
Martha
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Post by JLH »

YES, a separate toaster is necessary. Google "gluten cross contamination".
DISCLAIMER: I am not a doctor and don't play one on TV.

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Joan
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Gluten cross reactive foods

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DISCLAIMER: I am not a doctor and don't play one on TV.

LDN July 18, 2014

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Post by Zizzle »

Garina,
I never got up to 8 Peptos a day. I went quickly down to 4/day. Now I can take as little as one a day and notice the effect. Immodium was handy for emergencies but only seemed to delay the D. I also felt bloating on it, like it was just a stopper, but everything was still rumbling about inside. I recently bought CVS brand Immodium and it did not list lactose on the label.

I too had amazing improvement when I cut gluten and most dairy. But within a month, the D returned and I realized I had to cut ALL dairy. Soy reactions were never that severe, so I just cut obvious, non-fermented sources.

I hope you can get things under control in time for your trip!
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Post by garina »

Joan,

Thanks for the site regarding cross contamination. It is a real issue, and I have to be more vigilant about all that.

Zizzle,

For two days now, I took 9 Peptos each day. So far, no results. I really would like to cut it down, but without any results, I'm not sure I can. I will continue with the 9 daily (divided doses), and hopefully, success will be in the future. If it happened to you and others, maybe, I will see results later.

I can see that I need to also cut out all dairy along with gluten. I also started Culturelle twice daily. Something has got to work.

Thanks, your post is encouraging.

garina
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Post by sarkin »

Garina,

Double-check your Culturelle, to make sure that it is dairy free.

I hope cutting out dairy does the trick for you. When I was at my sickest, I could out all grains except very small amounts of white rice, and - oh, you know, everything ;) That phase did not last long - but a few days of homemade chicken broth with soft-cooked (peeled) potatoes was miraculous for me, along with the Pepto - and, I think, bananas. You may have a different magic potion - but once I got the D stopped, things started turning around for me, in many ways (I had energy and could think straight and felt optimistic... and stopped losing weight... I hope this starts for you ASAP). I still had plenty of learning left to do about what foods work for me going forward, but that first huge hurdle was the big one.

I can now eat many things that would have made me sick that first week, so please don't feel too gloomy about long-term deprivation. (Plenty of time to be sad about that, if you have to, but my experience was, I felt so much better, those foods on my permanent NO WAY list stopped tempting me.)

It's an interesting process of adapting. I have posted before about having a dream that I ate something - just mindlessly popped bread into my mouth, or ate pasta... and when I posted that, Tex and several others reported they've had the same dream. I think on conscious and unconscious levels, we have to go through a lot of subtle changes (what's in the fridge, the pantry; what's on the shopping list; if we share a kitchen with foods we can't eat, how do we manage that; restaurants, socializing, recipes...) All of that adjusting takes time, and different parts of it are harder for each of us. But you are already farther down this road than you realize. Hang in there, and keep us posted on how we can help.

I really hope tomorrow is the day the Pepto kicks in,

Sara
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