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I was known as the special case mystery patient...

 
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lalalauren16

unknown IP

Joined: 30 May 2017
Posts: 3
User's local time:
2017 Jul 23 - 6:47 PM


Food Intolerances : seafood, nuts, raw veggies, fruits, eggs, rosemary, .. many more
Location: Santa Barbara

PostPosted: Fri Jul 07, 2017 4:50 pm    Post subject: I was known as the special case mystery patient... Reply with quote

Hello everyone, I am new to this site and have been recently diagnosed with MC: LC. My name is Lauren. I am 23 years old and have suffered from many illnesses my whole life. To list a few for background information, I have acid reflex disease, anxiety disorder, the longest list of food allergies, dermographism, vulvodynia, and recently delt with having C-Diff and newly diagnosed with LC. My story is a long one that doctors have been having trouble helping me and I feel left with no where to turn to and no one that understands the pain. Back in Feb of this past year I had started getting extreme shooting pain from bladder into chest, what I thought was a bad bad night of food poisoning turned into week of continued diarrhea and forming into extreme constipation with mucus and blood. Knowing something was wrong went to the ER and they discovered through cat-scan I had a cystic on right ovary and what looked liked something going on with my intestines track that looked abnormal. Got tested for C-Diff because the recent use of 4 rounds back to back of antibiotics. Two days later it came back positive. Then was prescribed fagyl. Week later the diarrhea was back. Went back to ER and was given oral vanco for ten days. After finished course ten days later it was back with fevers of 103 and worse than ever. Put back on oral vanco and symptoms every time would completely disappear and I was the most regular in my entire life. I was determined in my mind that it was just this illness. Started seeing an infectious disease doctor who did not fully believe it was C-diff, so went in for an colonoscopy and after bio's they found LC. Went to the GI and he was not sure which one was causing problems, as it could have been likely i was just a carrier of c-diff. After months of convincing them to let me get a fecal transplant I finally got one. My doctor told me I was the first ever case he had that had c-diff and LC. It has been 10 days and my body has only presented constipation, I am not entirely sure anymore if it was c-diff however I feel amazing and now do not have extreme daily bloating. Anyways I have been changing my diet and I was wondering if I could get any advice for anyone that always has a lot of food allergies. I am also looking for someone like me, because apparently I am "one in a million" kinda deal. I feel so alone and lost because I have been avoiding dairy, and trying to avoid gluten but my family is not supportive on that. Also wondering about treatment options because my doctor said there is only one I can do which is a pill steroid (forget what it is called) and unfortunately I can not take it because my throat is abnormally sized so I have had multiple surgeries to open it but still have had time and end up choking every time I have taken pills. So that is out of the question for me as this pill cannot be broken up and eaten.
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Lauren B
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tex
Site Admin
Site Admin


Joined: 24 May 2005

Posts: 30151
User's local time:
2017 Jul 23 - 6:47 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: Fri Jul 07, 2017 5:32 pm    Post subject: Reply with quote

Hi Lauren,

Welcome to our Internet family. Your doctor is wrong. The steroid will mask the inflammation that causes LC, but it will not stop it from being regenerated with every meal. The proper way to treat LC is to prevent the inflammation from being generated in the first place. To do that you have to change your diet to avoid gluten, casein, and any other food that is causing your immune system to produce antibodies.

You almost surely have a chronic magnesium deficiency. That's what's causing the anxiety symptoms and it's helping to cause the inflammation that perpetuates LC. A magnesium deficiency cripples the immune system. It may be why you couldn't fight off the C.diff. Magnesium will also relax your throat muscles and make swallowing easier. Please excuse my brevity, I had a stroke a few months ago and typing is difficult.

Again, welcome aboard and please feel free to ask anything.

Tex
_________________
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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lalalauren16

unknown IP

Joined: 30 May 2017
Posts: 3
User's local time:
2017 Jul 23 - 6:47 PM


Food Intolerances : seafood, nuts, raw veggies, fruits, eggs, rosemary, .. many more
Location: Santa Barbara

PostPosted: Fri Jul 07, 2017 6:12 pm    Post subject: Reply with quote

Hello Tex!
Thanks for your response! Thats what I thought, because what I have seemed to learn is that drugs do not cure any problems. It always to start at the root. Is there a great guide I can go to for diet information? Also how can I make myself gain weight I have lost a dramatic amount of weight from 82 to now 73 and its terrifying. Is there any specific magnesium supplement you would recommend? Well you type and answer questions pretty well! I am sorry to hear that! I will by praying for you!
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Lauren B
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tex
Site Admin
Site Admin


Joined: 24 May 2005

Posts: 30151
User's local time:
2017 Jul 23 - 6:47 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: Fri Jul 07, 2017 9:33 pm    Post subject: Reply with quote

The Pharmaceutical companies have brainwashed physicians into believing that every ill should have an expensive drug thrown at it. They're going to have to relearn how to treat patients if they're going to survive as a profession in the future (IMO). You can download a guide for selecting safe foods for a recovery diet at this link:

Download diet guidelines

and you can find recovery diet guidelines here on this forum at this link:

Guidelines for Recovery

You will automatically begin to gain weight as you stop the inflammation and your intestines begin to heal, but that can take a while. As long as your intestines are inflamed, it's tough to gain any weight because of the malabsorption problem that LC causes. Carbs (grains) put on weight, but we can't digest carbs very well when our gut is inflamed. We need protein for intestinal healing. If you can tolerate healthy oils, such as olive oil (use California olive oil because a lot of even the expensive imported olive oil is contaminated with cheaper oils), or coconut oil, or animal fat (such as bacon grease, if you can tolerate it), they can add calories to your diet. But it's usually better to recover first, and add weight later, because trying to gain weight when LC is active can be an exercise in futility.

Cheap magnesium (such as magnesium oxide) causes diarrhea (D). Most members here use Doctors Best brand of chelated magnesium (magnesium glycinate). About 300 mg (3 tablets) would be a good dose per day early on. But they are fairly big pills, and might be tough to swallow. Therefore it might be safer to use a magnesium lotion or oil on your skin, You can absorb magnesium that way. Or an Epsom Salt foot soak works well, or adding Epsom salts to your bathwater. And absorbing it through the skin will avoid any diarrhea risk, also. There's a liquid form available called ReMag, but it's pretty potent stuff, so it might be better to try absorbing magnesium through your skin, first.

Thanks, I'm recovering fairly well from the worst effects of the stroke.

Tex
_________________
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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lalalauren16

unknown IP

Joined: 30 May 2017
Posts: 3
User's local time:
2017 Jul 23 - 6:47 PM


Food Intolerances : seafood, nuts, raw veggies, fruits, eggs, rosemary, .. many more
Location: Santa Barbara

PostPosted: Wed Jul 12, 2017 11:08 pm    Post subject: Reply with quote

Thanks Tex! I bought the olive oil from California that you suggested! So from what I've read if I understood this correctly the only things I can eat are duck, wild animals and cooked veggies for the diet recovery and that's it? How will I know I'm in remission? Once achieved? Also once I am what can I eat once in remission? Does that mean dairy and gluten are off limits for the rest of my life? Is there any lotion in particular that you would recommend like a brand? Also would I be able to have alcohol or kombucha or hummus at all?
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Lauren B
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tex
Site Admin
Site Admin


Joined: 24 May 2005

Posts: 30151
User's local time:
2017 Jul 23 - 6:47 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 Jul 13, 2017 7:56 am    Post subject: Reply with quote

You overlooked lamb and turkey. Even though they're farm-raised, no one reacts to them, so they're safe. And shellfish are usually safe (unless you are otherwise allergic to them). A high-protein diet is important for healing the intestines.

Remission varies by the individual, but basically, when you can do the things that you want to do, without worrying about the location of the nearest bathroom, and you feel as good or better than you felt before you got sick, you're in remission. When the days continue to go by without a reaction, you're in remission. When you notice you're not sick anymore, you're in remission.

What you will be able to safely eat after remission basically depends on whether or not the foods you select cause your immune system to produce antibodies. Gluten always causes problems. Casein (dairy) may or may not. Soy or eggs may or may not be a problem. Some meats, grains, fish, or nuts may or may not be a problem. We're all different. You can determine your sensitivities by trial and error testing, or by sending a stool sample to EnteroLab early on (like very soon, while the antibodies are still in your system.

Whether or not you will be able to use alcohol, kombucha, hummus, or other high-histamine foods depends on whether of not you are sensitive to histamine. Some of us are, but if you are not especially sensitive to histamine, you may be able to tolerate moderate and even large amounts of those foods. If you are sensitive to histamines though, a little may be OK, but a moderate or large amount may cause a reaction or even a flare.

Tex
_________________
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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Gabes-Apg
Emperor Penguin
Emperor Penguin


Joined: 21 Dec 2009

Posts: 6907
User's local time:
2017 Jul 24 - 10:47 AM


Food Intolerances : Gluten, Yeast, Caesin, Soy, salad/raw veges and fruit
Location: Hunter Valley NSW Australia

PostPosted: Thu Jul 13, 2017 6:22 pm    Post subject: Reply with quote

Lauren
as Tex mentions what you can safely eat is very individual to each person.

eating plan wise what I have seen over my time here on the board each person has;
- staples - ingredients that they can eat every day no issues
- not quite staples - ingredients that they can have 3-4 serves of a week (but too much can cause issues)
- treats - ingredients that they can only have small serve every few weeks/couple of months (ie eating out at a function or wedding etc)
in all cases most here will avoid Gluten 99.9%

there are things like gluten ease and digestive enzymes that will provide some 'protection' against contamination when eating out. These are not total protection and will not protect villi damage if you eat gluten on regular basis.

same with histamine raising foods, if you are low in B6 and magnesium and reactive to histamine then things like alcohol, ferments, kombucha etc can cause more issue than benefit.
hope this helps
_________________
Gabes Ryan

"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
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