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I was known as the special case mystery patient...
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lalalauren16
Little Blue Penguin
Little Blue Penguin


Joined: 30 May 2017
Posts: 31
User's local time:
2017 Dec 17 - 5:24 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
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Joined: 24 May 2005

Posts: 30861
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2017 Dec 17 - 5:24 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
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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
Little Blue Penguin
Little Blue Penguin


Joined: 30 May 2017
Posts: 31
User's local time:
2017 Dec 17 - 5:24 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
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Joined: 24 May 2005

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2017 Dec 17 - 5:24 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
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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
Little Blue Penguin
Little Blue Penguin


Joined: 30 May 2017
Posts: 31
User's local time:
2017 Dec 17 - 5:24 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
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Joined: 24 May 2005

Posts: 30861
User's local time:
2017 Dec 17 - 5:24 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
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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
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Joined: 21 Dec 2009

Posts: 7276
User's local time:
2017 Dec 18 - 9:24 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
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Gabes Ryan

"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
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lalalauren16
Little Blue Penguin
Little Blue Penguin


Joined: 30 May 2017
Posts: 31
User's local time:
2017 Dec 17 - 5:24 PM


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

PostPosted: Wed Jul 26, 2017 2:14 am    Post subject: Reply with quote

Hey Tex & Gabes, sorry for the late response!
its hard to navigate the site to finding my post again so I can respond!
Anyways that makes sense with lamb and turkey. Does that mean that beef or chicken is nearly impossible for it to be apart of our diet? What about getting meat like that from farmers market? Just a curious thought. How do you know how sensitive to histamine? Also about what time frame is the best for the Entrolab? Also with dairy you guys talk about casein which I think I understand is the main component of dairy? So I am assuming that if I drank for example lactose free dairy milk that probably wouldn't help? Where would I find more information on high-histamine foods? What would you guys recommend for figuring out if you are low in B6? For both of you guys are your flares diarrhea or constipated? If so is it more than another? Mines seems to be constipation and a weird thing I can not seem to figure out is I have a lot of mucus that shows on my stool. Is this a sign of too much yeast in the gut? Or our condition? And I have been seeing what seems like this orange/reddish mucus as well and I showed my GI and he was completely clueless! I'm kind of at a loss for word on what to do on that end...
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Lauren B
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Gabes-Apg
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Joined: 21 Dec 2009

Posts: 7276
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2017 Dec 18 - 9:24 AM


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

PostPosted: Wed Jul 26, 2017 2:31 am    Post subject: Reply with quote

Replies in bold

Does that mean that beef or chicken is nearly impossible for it to be apart of our diet?
for some people yes. some people do ok with grass fed beef, and free range chicken.


What about getting meat like that from farmers market? any protein source that is grass fed /free range and has had minimal handling/transport is going to be better.

Just a curious thought. How do you know how sensitive to histamine?
histamine reactions: runny nose, watery eyes, itchy tongue/lips, cough/irritated throat, rash,

Also about what time frame is the best for the Entrolab? ?? time frame for results - i think it is about 3 weeks

Also with dairy you guys talk about casein which I think I understand is the main component of dairy? So I am assuming that if I drank for example lactose free dairy milk that probably wouldn't help?
correct - lactose free still has caesin.

Where would I find more information on high-histamine foods?
loads of sites and info
https://healinghistamine.com/
Mast Cells is kinda like another name for excess histamine in the body for extended period of time
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=17780

What would you guys recommend for figuring out if you are low in B6?
you can do a B6 blood test, but current day testing results show B6 levels - this includes active B6 (usable) and inactive B6 (body has to process it to be useable)
you can have a high B6 blood test result but be low in active useable form of B6

there is not harm in taking low dose P5P (active form of B6) if you feel better then you know you need it! if symptoms continue, increase the dose

For both of you guys are your flares diarrhea or constipated? If so is it more than another?
as part of Diagnosis, it was diarrhea, then at times during my wellness journey my poop was either constipation or MC mud. one or the other.

Mines seems to be constipation and a weird thing I can not seem to figure out is I have a lot of mucus that shows on my stool.Is this a sign of too much yeast in the gut? Or our condition?
constipation and mucus are signs of inflammation (the same as diarrhea is sign of inflammation) mucus is inflammation and maybe excess histmine

And I have been seeing what seems like this orange/reddish mucus as well and I showed my GI and he was completely clueless! I'm kind of at a loss for word on what to do on that end...
undigested food / undigested supplements mixed with the stool / mucus ; or it could be blood from haemarroid staining mucus or it could be something else.

given the combo of issues the following should alleviate most (maybe all) of your issues,
- bland low inflammation eating plan as per our guidelines to recovery (tex provided the link above)
- Vit D3, magnesium, P5P
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Gabes Ryan

"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
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tex
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Joined: 24 May 2005

Posts: 30861
User's local time:
2017 Dec 17 - 5:24 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: Wed Jul 26, 2017 8:35 am    Post subject: Reply with quote

Hi Lauren,

To add my thoughts (that differ from Gabes' responses):

Free range or organic is better, but it won't solve the problem if you are sensitive to chicken or beef (that won't change the DNA).

Best timeframe for EnteroLab testing is immediately. The sooner the better, so you can use the results.

When I was reacting, I had alternating D and C in about a 2 to 3-week cycle.

Tex
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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
Little Blue Penguin
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Joined: 30 May 2017
Posts: 31
User's local time:
2017 Dec 17 - 5:24 PM


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

PostPosted: Wed Jul 26, 2017 2:05 pm    Post subject: Reply with quote

Hmm that makes sense I will get the entrolab testing to figure this out. I only have histamine reactions to certain things I've noticed like sesame and raw veggies or fruit. Thanks Gabes I will try all this. Yeah I am concerned about the blood like parts. It seems as though no one has had this ): when your guys flares did come on did you get body and muscle aches along with fevers?
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Lauren B
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Gabes-Apg
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Posts: 7276
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2017 Dec 18 - 9:24 AM


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

PostPosted: Wed Jul 26, 2017 2:57 pm    Post subject: Reply with quote

raw veges are an issue when a MC'er is inflamed (and for me personally I have never been able to reintroduce raw veges)
fruit is also an issue, high sugar, fibre etc and should be avoided for a while until there has been good healing, and even then consumed in small amounts. The safest fruit is banana, (not under ripe, not over ripe) and cooked apple. (dried fruit is super high histamine and definitely should be avoided)

the blood/orange mucus may be looking worse depending on what fruits and raw veges you were eating.
my suggestion is, going to the bland, low inflammation eating plan (with only 1 or 2 cooked veges avoiding veges that are orange or red in colour) should reduce this issue. and enable you and the doctor/GI to determine if it is blood, or is it related to the foods you are eating.

this also applies to anything you are drinking, stick to plain water... no citrus, nothing that has any red or orange colour.

given the limited guidance from the doctors, your best way forward is to figure it out yourself. my suggestions above are the best steps to doing this.
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Gabes Ryan

"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
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tex
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Joined: 24 May 2005

Posts: 30861
User's local time:
2017 Dec 17 - 5:24 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: Wed Jul 26, 2017 3:02 pm    Post subject: Reply with quote

I had all the symptoms of a severe case of flu, so yes, I had all those symptoms. I felt as though I had been run over by a truck many mornings as I would drag out of bed and race for the bathroom, hoping I would make it in time. Many times I vomited up my guts in a trashcan as I sat blowing them out the other end. Those were not the good old days. Laughing

Tex
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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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Erica P-G
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Joined: 08 Mar 2015

Posts: 1274
User's local time:
2017 Dec 17 - 3:24 PM


Food Intolerances : Gluten, Dairy, Eggs, Soy, Tuna, Beef, Oat, Almonds, Walnuts
Location: WA State

PostPosted: Wed Jul 26, 2017 3:33 pm    Post subject: Reply with quote

Welcome Lauren,

You've gotten great help here!

I think once you back way off of everything Gluten, Dairy, Soy and Egg FREE and introduce the Magnesium lotion or oil (Life-Flo makes a good absorbing inexpensive one https://www.vitacost.com/life-flo-magnesium-loti...;mtp=sqBxt81zI-dc|) it also comes in oil too. Epsom Salts baths are great 1-2 cups in a nice warm bath absorbing it for a good 20-30 minutes!

Don't forget VitD3 levels.....you need good levels around 50-80 and to get it to this level it will take the Magnesium as they work in tandem Wink

You are young.....you will see results rather soon I am sure of it. The gluten protein may still mess with you for a few months...so it is important to stay away from it completely....it is a life long commitment.
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To Succeed you have to Believe in something with such a passion that it becomes a Reality - Anita Roddick
Dx LC April 2012 had symptoms since Aug 2007
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lalalauren16
Little Blue Penguin
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Joined: 30 May 2017
Posts: 31
User's local time:
2017 Dec 17 - 5:24 PM


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

PostPosted: Wed Jul 26, 2017 4:05 pm    Post subject: Reply with quote

Gabes - Yeah its unfortunate but I am allergic to bananas and apples, so I am concerned that if I avoid all fruit that I would get scurvy. Yeah I believe I off and on ate strawberries, I even cooked them. Which I don't know if that helps to decrease fiber or not. Thats good to know I will just stick to zucchinis and broc. Is asparagus a safe one or cauliflower? Yeah I only drink water. I have drank cranberry juice the trader joes one but maybe I need to eliminate that.

Tex - Well that makes me feel better because I was thinking maybe the c-diff is returning. It makes things overwhelming for me on that level. Do you recommend Tylenol? And for electro lights what do you do for that? In the past I was drinking a lot of Gatorade, but its high in sugar. I had tried Vitamin Water at one point too.

Erica - Thanks for the information, I will do that indefinitely. Are those Vit D supplements in pill form though? Or is there a liquid I could take? I hope so, I just am so concerned when my body weight is 75 like I can not afford to lose this weight.

Is it ok to drink homemade chicken soup? With the bone broth or will that affect me badly?
Also I kinda feel left out of options because I am allergic to all nuts, raw fruits/vegs, eggs, dairy, gluten, sesame seeds, rosemary, melons, cantaloupe, watermelon, pears, bananas, apples, corn, all seafood, and still don't know for meats since I never had those tested before really.
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Lauren B
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