Rough going and need some input

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tex
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Post by tex »

Kim,

Eliminating only gluten from your diet initially and then slowly phasing out other food sensitivities later will not set back your recovery program by any significant amount of time. Here's why:

The 120-day half-life of anti-gliadin antibodies means that it takes a long time (typically many months) for gluten-associated antibodies to decay back down to a decent level, and therefore it takes a long time for intestinal damage from gluten to heal. All other food sensitivities result in the production of antibodies that have approximately a 6-day half-life. That means that any damage from those foods heals much, much faster than damage caused by gluten. So clearly gluten should be the first food sensitivity to be eliminated from the diet because it requires a much longer recovery/healing period than all of the other food sensitivities.

I hope that you will be feeling much better by tomorrow.

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 Adelaide »

That is what I am doing Kim. Gluten has been the first to go and now I really need to get the remaining dairy out of my diet. Only then can I really work out the other intolerances.

All the best with it all Kim. I hope you are feeling much better soon.
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Post by Alchemy1 »

Thanks, Linda for your words of encouragement. I also agree with you, Tex. Gluten has to go first...and I'm going to include oats, as well, because I'm very sensitive to them. I think that's enough to take on for the next few weeks. I'm starting to feel better but am still a little on the icky side of things. I have another headache today, but it's not quite as bad as yesterday, so I know things are improving. I just have to hang tough and ride this detox out!!

Believe it or not, this is actually worse than giving up the smokes (and I had that nasty habit for 20+ years)! I keep feeling all strange and out of sorts and I'll think...I want something...man I really want something...what the heck is it I want??? And then I'll realize it's gluten that my body is craving!! I can actually feel the jones and never expected that! It's really surprising but at least I know that it's happened to others and it will pass (hopefully soon :smile:).

Thanks again for all the advice and well wishes! I'm sure things will go a little more smoothly for me if I concentrate mainly on gluten and worry about the other stuff later. I just took on too much at once which isn't unusual for me!
Kim "The Outhouse Polka Queen"

Raynaud's Disease, 1982
Thyroid Disease, 2007
Collagenous Colitis, 2010
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Post by Alchemy1 »

I seem to be having a bit of a setback. My husband made deep fried fish, as suggested by Tex, and we both got sick from it. I have to point out that living in a small desert city has it's drawbacks. The meat (and especially fish), sometimes isn't the freshest or the best quality...not like it was in Denver anyway! My husband was sick for one day, but I've been miserable for almost a week. I think it was food poisoning and, since it happened, I've lost a lot of ground with my recovery in the last week. Also, I've developed a new, and extremely nasty syndrome, which I have dubbed "The Sneaky Shits". In the past, I've always had enough warning to make a run for the bathroom, but this is different. Not to be graphic and gross but I've had several incidents where a little bit of watery mung will just leak out into my undies before I even know what's happening! This results in a warp speed run for the nearest commode because once it starts, the old pucker strings can only hold it back for a few seconds. Once on the commode, I'm usually stranded there for a good 15 minutes or more, and it's painful as well as unpleasant. NOTHING like this has happened to me before and it's really difficult at work...actually it totally sucks! Fortunately, I was doing a desk day the one time it happened at work. I keep field clothes, including extra undies, in my locker and the mung didn't get past my undies (thank God)! I put on a fresh pair of drawers and was good to go again but I live in fear of something like this happening while in the field...or worse yet in the truck with my coworkers! :oops:

I'm still having some issues with the gluten detox, but things were getting much better...especially after I started taking magnesium and vitamin D. Then THIS had to happen! Could it be an autoimmune reaction which started when something invaded my guts from the bad fish? I've been taking Imodium & Pepto Bismol, to get through my field work, but it still scares me to leave the building. I also get terrible bloat when I use meds like that because the damned colitis isn't getting its way. If this doesn't clear up soon should I try this new GI doctor I've been considering? After that last boob I just dumped, I really don't have a lot of faith that a GI doctor is going to be able to help me. Does anyone have advice or suggestions which might help? This has really upset my applecart and it's not fair because I've been such a good girl where the gluten is concerned! :sad:
Kim "The Outhouse Polka Queen"

Raynaud's Disease, 1982
Thyroid Disease, 2007
Collagenous Colitis, 2010
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Post by Erica P-G »

HI Kim,
I'm sorry you've had to experience that foodborne illness and the after math with MC. I notice I have the "sneaky poo" when I have let myself get stressed over something (anything that might raise my blood pressure, and I mean anything). It can also sneak up on me if I have done lots of physical things and perhaps stretched my magnesium stash too thin. I've always felt I had a delicate stomach situation growing up, could handle some things and didn't do so well with others which sent me to the bathroom on numerous occasions as a child and on up. I shake my head at those instances now, knowing what I am going thru at this moment and perhaps having safe foods back then might have helped me more than I will ever know.

Try to relax and know this too will pass, try not to ponder on it so much. I think thinking about this stuff gives it a reason to appear at times...just my opinion.

Too much histamine in the fish, how it was cooked....many possibilities to why our gut reacts. So I hope you feel better soon and remember Fresh and Less is Best :wink:
Take care,
Erica
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Dx LC April 2012 had symptoms since Aug 2007
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Post by tex »

Kim,

I'm sorry you're having a setback because of a bad batch of fish. Your symptoms are classic MC (been there done that), but I wonder if you might have some sort of bacterial infection that is more persistent in your case (compared with your husband's case) because your immune system is already overworked by the MC and therefore less effective at fighting a bacterial infection. If the increased symptoms persist, it might be a good idea to ask for stool culture tests to see if an infection can be identified.

Histamine is also a possibility, as Erica mentioned, because outdated fish can provide a megadose of histamine that MC patients cannot easily purge from their body due to depleted diamine oxidase enzyme levels. Do you have any signs of a rash, or red, itchy spots anywhere on your body? They are common markers of histamine reactions.

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 Alchemy1 »

Thanks, Tex and Erica for the advice and kind words. I have been under a horrible amount of stress, in addition to getting poisoned. I'm still having some really bad issues. The D hasn't stopped and is actually worse than it's ever been since before I was diagnosed. If I eat something, I end up on the toilet within 10-20 minutes and good lawd is it horrible. I'm on my fourth day of not eating. Still shitting like a goose. I've been drinking Pedilite and trying small amounts of rice and other safe foods...but that always sends me straight to the commode. I haven't had gluten in quite some time, but I feel worse than ever. That damned fish!! It threw me off the rails so badly. I had an appointment with my PCP doctor but of course he cancelled on me at the last minute. That's so common here because there aren't enough good doctors and this is one of the top 10 retirement communities in the US. They're all way overbooked and it can take months to see my actual PCP. I usually get thrown off on a nurse practitioner or his partner (whom I absolutely detest) and I'm too ill for that nonsense. I made an appointment with the new GI doc in El Paso, but that's going to take another six weeks. I must have something bad going on in my guts. And I'm sure that the tremendous amount of stress I'm under isn't helping things at all. I'm a little bit scared so I guess maybe I'd better go see the nurse or something cuz this just ain't right!
Kim "The Outhouse Polka Queen"

Raynaud's Disease, 1982
Thyroid Disease, 2007
Collagenous Colitis, 2010
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Post by tex »

Kim,

I wonder if you might have a bacterial infection that was caused by the fish, or even a parasite. A series of stool cultures to rule those out might be in order.

That kind of appointment lead time is unacceptable health care (kinda like the VA), and it verifies that this country is way short on doctors (probably because of the escalating doctor burnout rate). Interestingly, the hospital that my PCP is associated with previously required appointment lead times of several weeks or more. Last year they were "bought out" or integrated into another hospital system, and since then I can almost always get same-day appointments. :shock:

Be sure that if you do any cultures they look for C. diff. False negative results are common, so in many cases it takes 2 or 3 repetitions to get a positive result.

That said, if the stress is bad enough, it can be sufficient to cause what you are experiencing. You need some relief if that's the case. A crash course in stress relief techniques might be helpful.

Good luck, and please keep us posted.

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 Gabes-Apg »

Agree with Tex, sounds like bacteria's or parasites have take over!

a good option for this is cholestrymine....
it has helped many MC'ers and is proving very successful for bacteria and parasite issues

as you cant see the GI for another six weeks, is there any option to visit an ER to get help sooner?

Pedelite has some unfriendly to MC ingredients even the unflavoured one - a better option would be to make your own drink
3. You can make an inexpensive homemade rehydration drink. Measure all ingredients precisely. Small variations can make the drink less effective or even harmful. Mix together:

1 quart (950 ml) water
½ teaspoon (2.5 g) baking soda
½ teaspoon (2.5 g) table salt
3 to 4 tablespoons (45 to 60 g) sugar
If available, add ¼ teaspoon (1.25 g) salt substitute, such as "Lite Salt".
(source http://my.webmd.com/hw/health_guide_ato ... ar=hw86827 ).
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Post by crervin »

Kim,
When I started the elimination diet back in July of last year, I started with gluten the first month, then a couple of others the next. By the 3rd month, I was free of the 8 top sensitivities. It wasn't too dramatic to wipe me out. I wasn't a big gluten eater anyway though relative to my friends. Good luck and hang in there!

There are duck eggs out there with a different protein. I wouldn't start them too early, but just keep that in the back of your mind. I eat and bake with them occasionally. I don't on a "bad" day, but I tolerate them pretty well.
Martha E.

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Jul 2008 took Clindamycin for a Sinus infection that forever changed my life
Dec 2014 MC Dx
Jul 15, 2015 Elimination Diet
Aug 17, 2015 Enterolab Test
Dec 2015 Reflux
Sept 2016 IC
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Post by Alchemy1 »

I think Tex and Gabes are right...something nasty has invaded my guts! It has to be a bacteria or parasite because it's not getting any better no matter what I do. I have the Big D so badly now that I'm passing my Asacol pills whole which is BAD! NOTHING is staying in my system. It's just blowing right through me! I stopped the Pedelite because Gabes said it was unfriendly, and tried her drink which seemed to help some. Naturally, Pedelite is what my old GI doctor told me to drink when I was really ill. That man knows absolutely NOTHING about MC and it makes me so mad that I wasted my time with him. There aren't enough doctors in this area, and with the huge retirement community population, there are a lot of older people who naturally have lots of health issues. This amounts to a total nightmare for people like me. When I get sick I need help NOW...not two months from now!!

Since this mess started I've dropped over ten pounds and am still losing weight. Every time I eat, I get really sick afterwards. Is cholestrymine something I can get at the health food store? I need something to get me through until my appointment with the new GI doctor. I hate the fact that he's clear in El Paso because it means a long drive with nowhere to stop for long stretches of road. That drive is the one where my famous "Freeway Incident" from "Moses in the Bullrushes" occurred. I'm convinced that a lot of the doctors around here are quacks and they've done WRONG by me! I'm just hoping this new guy isn't another loser. If I get any worse, I'll have to go to urgent care or something. The ER is so expensive and my husband's good insurance just ran out. My insurance is about as bad as it gets so it will mean a lot of out-of-pocket expense and he's unemployed right now. I don't want to have a pity party but my life is in a lot of turmoil right now and I think it's a big part of the problem. I do believe that I need some stool cultures, as well, cuz I can tell something is just not right. This isn't normal even for MC! Well, I must be RUNNING to the bathroom again!!

Hugs to all!
Kim "The Outhouse Polka Queen"

Raynaud's Disease, 1982
Thyroid Disease, 2007
Collagenous Colitis, 2010
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Post by TaiaK »

Oh Kim-

This sounds awful. I am so sorry this is happening to you. I can feel your emotion through your writing. When my MC started, my budesonide pills went through me in no time and the pharmacist and Dr thought I was crazy. Typical.

Cholestrymine is prescription only. :sad:

Does immodium work? (or maybe that's bad if it is a parasite type thing...)-anyone?

Def wear a diaper, bring wipes and extra clothes for your drive if you have to-no shame at all. It's better to be prepared. I've had a few "car" accidents.

Will be watching this thread. We are all here for you!

Taia
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Post by crervin »

kim,

So sorry to hear this, but know exactly how you feel. Been there done that with doctors and nurses who had me in tears basically telling me to tough it out cause the Dr didn't have an opening.

Can you eat potatoes or rice? Try eating just those for 3 or 4 days, or even a week to see if things calm down. Or just turkey and bone broth that you cooked. Make sure it's frozen, histamines cause problems. Also, try pepto, some immodium ad has lactose in it and it actually caused me D. Don't drink anything except water if you can help it.

Sadly your GI Dr probably can't help very much. Have you gotten the MC book? It changed my life. It will help more than any dr, but you still need a Dr for lab tests. Do you have your gallbladder?

Hope this helps!
Martha E.

Philippians 4:13

Jul 2008 took Clindamycin for a Sinus infection that forever changed my life
Dec 2014 MC Dx
Jul 15, 2015 Elimination Diet
Aug 17, 2015 Enterolab Test
Dec 2015 Reflux
Sept 2016 IC
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Post by tex »

Kim,

One of the reasons why doctors are in short supply in Arizona is because medicare doesn't pay well enough to inspire doctors to go there to practice, and that low-profit environment doesn't tend to attract the best doctors, either.

If you just needed a blood test, you could probably find an "Any Lab Test Now" facility, but unfortunately they don't do stool cultures, and I can't think of a way to arrange stool culture testing without seeing a doctor first.

I'm sorry that you're having such a tough time. I hope the wait for the new doctor will be worth it.

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 Adelaide »

In Australia our Naturopaths can organise stool testing for parasites. Or do you have any Functional/Integrative doctors in your area? They do tend to be expensive though.
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