The Beginning - Good Enough Of A Diagnosis

[ezgoindude]

I took a peek at your profile, it seems we are different in some symptoms but very similar in our unknown diagnosis.  

 

What frustrates me most is how subtle this disease/disorder/etc is,  since last year almost ALL symptoms have resolved, my biggest reoccurring complaints is how my stools are and the fact I cannot seem to gain a single pound of weight.......

 

when you say autoimmune diet have you been using the autoimmune paleo protocol?  I've been very interested in the idea after listening to several professional podcasts within that community.

[ezgoindude]

OCTOBER 2014 UPDATE:

 

Alright, since last month I had to cut out the sweet potatoes, my stools were returning loose fluffly just plain crappy, etc so I've since purchased the SCD diet book and was contemplating the complex carbs being the problem.

 

I am currently stuck to:

 

Greens, preferrably cooked (kale, lettuce, chard, various fresh herbs on occassion)

Chicken

EVOO

Coconut oil

zucchini

 

I went out once this month with my boss and had a steak, I don't think I had problems! woooot

I tried to eat a whole jar of almond butter in a few days,  I did catch my body kinda proccessed it okay but I had terrible smelling (really bad) gas for around 2-3 days.

 

Again, same as the month prior, I have almost no symptoms whatsoever, except:

 

stools slightly smell, almost always float, have a shiny sheen on them (yet my doc says my fecal fat is normal ?!?)  (they are however well formed since taking out sweet potato)

I am not gaining any weight

NEW REOCCURRING PROBLEM:  I've noticed on rare occassion the last portion of my stool would have a TINY, tiny amount of blood.  During my colonoscopy they caught I had "a few minor internal hemmorrhoids" to which my GI doc said they would resolve on their own.  Well, 7 months later and it looks like no change!  Again very very uncommon that this happens but gotta be safe right?  hopefully my next month update i'll have my insurance plan

[Ninja]

Hi ezgoindude,

 

I am on the fly and will come back with a more thorough reply but a few things. . .

 

Yes, I am on a sort of hybrid paleo/Mediterranean/anti-inflammatory diet. I do not eat any grains, which made a huge difference for me all the way around, but I do eat yogurt (all other dairy I avoid). It's been quite a journey to figure out what my body does and does not tolerate and it certainly sounds like your experience is similar in that regard. I am still continuing to learn and sort things out; luckily these days I am getting foods back versus the opposite.

 

It does sound like your SIBO hydrogen breath test was botched unfortunately. Those sorts of tests are kind of iffy to begin with so it is never a bad idea to re-evaluate periodically!

 

Reading your signature, I see that you have noticed some improvement on a low histamine diet? Out of curiosity have you ever had food allergy (IgE) skin tests (aka scratch tests)? If so, do you remember if you might've reacted to the 'control'? The control is typically just concentrated histamine, and thus may shed some light on a possible connection.

[ezgoindude]

evening ninja!

 

yea the fall schedule always has me on a time crunch, the whole autoimmune thing makes naps a necessity lol.  I have not done any IgE testing yet,  once my first GI doc saw I had a mild elevation of inflammation in the gut by stool test he said I had Crohns or Celiac and diet would make little to no difference.... jeessh.  Then they put me under and my biopsies saying I have neither.  and its funny cuz he visually said my duodenum looked completely crapped out, from his own experience it would be a parasite or food intolerance.  and well the parasite test was negative....  exhausting!

 

my only though process that it could be histamine relation are the foods that give me the worst reaction:   anything with yeast or vinegar, cured meats, wine, commercial kefir i've tried, mushrooms....... sometimes strawberries or tomatoes, maybe with those its just the seeds though?  (besides like your saying my reactions to grains, dairy, soy)

 

I'm currently applying for healthcare for the first time,  once that kicks in I'll definitely continue more testing.  Rather than prying for a diagnosis, I'm going to make it easier for my new GI and aim for maybe tests that would show any deficiencies or imbalances in my flora perhaps, if they can even do that correctly.  I will ask him why I did not drink or eat anything before taking the hydrogen breath test....... I didnt fast either, they were like here, we're going to test for overgrowth.  I was excited, but irritated now reading in how it should have been done. 

 

I'd be interested to here what foods you enjoy that are anti-inflammatory,  the next few months for me i'll be reintroducing specific foods, maybe even spices or herbs for a marinade.   The regular small steak or chicken is satisfying but getting boring.

[ezgoindude]

alright mini update in my elimation diet: 

 

I've stuck with whole foods at home only, different kinds of meat and low carb veggies.

 

I made coconut chocolate macaroons and homemade almond butter cups with chocolate during thanksgiving, I think my body DOES NOT appreciate chocolate at all because my health has been fluxuating the past two weeks.

I had headaches, would always want to sleep, and my face would get hot or I would turn red very easily.

 

ON A POSITIVE:

 

I discovered my body so far is loving my new brand of ezymes.

I used to take 1/2 a enzymatica digest basic pill during meals and would always have burning and irritation BUT

I always noticed my stools float and I switched to enzymatica lypo gold which and I can take a whole capsule during meals with NO STOMACH PROBLEMS.... sweet.

 

On a negative I've lost 2 pounds and my stools, although slightly the same / well formed/ etc,  are starting to have small chunks of mucus at the ends.  I've considered this happening from my body flushing out the chocolate and my new enzymes working?  time will tell....

[GFinDC]

Hi Ezgoindude,

 

It might not be the chocolate giving you issues.  Chocolate often has dairy and soy in it.  Dairy and soy can cause reactions in people also.  You could test by getting some Hershey's coco powder and trying that.  The can's of powder are just plain coco with no dairy or soy.

 

An alternative to chocolate is carob powder.  Carob has a somewhat similar taste, but is not exactly the same.

 

If it turns out to be dairy or soy causing the reaction that eliminates a lot of processed foods.  But there are lots of alternatives in whole foods to eat instead.

 

I hope you figure out the mucus cause soon.  I have had that happen also and it turned out one of the triggers for me is carrots.  Which surprised me for sure.

[ezgoindude]

sup GFDC!

 

yea i bought the hippy approved Enjoy life chips, which was soy,dairy,gluten free.  My reaction must have been from either the chocolate, shredded coconut, or honey.  Carob sounds great but the one at the store had soy in it, and at this point I give up on the baked sweets for now......

 

So depressed carrots are on your no list, lol, I need safe veggies to add back other than cold leafy greens.... I'm currently using an enyzme on a regular basis (my stomach couldn't handle 6 months ago) and really hoping this platforms into the next level until my insurance kicks in so I can ask for a vitamin panel.

[GFinDC]

Hi EZ,

 

Brussel sprouts aren't too terribly leafy.  Or at least they have small leaves.  Green beans and ham might work too.  Or lima beans.  You are probably already eating sweet potatoes.    i like avocados but they aren't a vegetable.  Squash can be pretty good.  I guess I ate enuff carrots in my life.  Not missin' 'em really.   I like to cook sweet potatoes in soup til they breakdown and make a thick stock.  Which takes a little tater mashing generally.

 

I did have a reaction to shredded coconut one time.  Could have been an off bag of the stuff I 'spose.  It hasn't bothered me since.

 

Enjoy Life brand makes good chips, so maybe you got pure wheat honey.  They say some of the imported Chinese honey is cut with other sweetners too.   Just another possibility  to consider.

 

I hope you feel better soon.  Maybe once your insurance cuts in you can get an allergy test done for soy etc.  If you have an IgE (allergy) reaction that can be pretty serious stuff.

[ezgoindude]

Good morning!

 

Thought I'd pass along my new 2015 update!  Things have reached a plateau, I have not seen much improvement the past 6 months.  Not getting any worse, but I'd wish I could gain some weight!  My obamacare just got approved so I get to find a new GI starting on the 15th.  My plan is to check specific vitamin deficiencies, along as trying to bribe my doc into a perscription of creon (lol, which I heard perscriptions aren't hard to grab)

It's been interesting to see I'm now almost completely dependent on over the counter pancreatic enzymes, but I'd like to re-test for SIBO, as my orginal test I was given NO liquids and I had just woken up, so technically kinda fasting.  Yeah no wonder it came back normal!

 

Current NOs:

gluten

all grains

dairy

soy

eggs (haven't tested in baking yet...)

most fodmaps

red meat

coconut oil (I think really anything high in fat is just hard)

 

My most recent sadface discovery is I made not tolerate sugars too well.....

Every day the past 3 weeks I've been making a blueberry almond butter kale smoothie,  every so often i'll throw a banana or apple to switch it up.  I know almond butter isn't the problem, it's been a safe staple for me for almost a year, but my stools are beginning to loosen up again and it ocassionally burns.

 

On a positive note I found some great SCD reference sites for the intro diet,  and since fruits may? be a problem i'll be cooking what looks to be only meats and veggies for a few weeks to review the results.

[ezgoindude]

FEB 2015 update:

 

Although probably clearly obvious for most of you,  I have from my own experience realized my body cannot handle fats.  As to the quality of fats and how much, I'm still in the works lol.   The reason I bring this up is almond butter has always been a go to food for my smoothies, but recently I've been eating it by the spoonful and BAM,  I can't tell you how bad of bathroom breaks I've had the past 24 hours.  Foolish human, I should have known better.  Even with the pancreatin it looks like I'll have to leave the almond butter to a max one tablespoon a day for now.....

[ezgoindude]

EXCITING UPDATE:

 

My insurance kicked in, I saw a new (third) GI today, he is VERY interested to get down to at least an idea of what I have.  It's funny because he didn't seem too interested until he heard my first GI doctor was in intern in the same program back when he first started.  I think the competition is on!  which I don't mind, it doesn't change much but comforting to my own sanity i'm sure....

anyways the new tests I'm doing this/next week:

 

CBC with Ferr (ferritin), Retic (reticulocyte count) and TIBC (Total iron binding capacity)  I was anemic as a child for a few years, this test is just an idea of any possible secondary symptoms I have (occasional numb limbs, tingling under shoulder blade, bradycardia)

 

Giardia antigen test ( i took a parasite test last year, maybe he wants to make sure?)

 

Fecal Lactoferrin test (verifying any further possible chronic inflammation I may have)

 

Fecal Qualitative Fat Elastase review (VERY interested with this, its just a bummer I have to stay off my digestive enzymes for a few days to get a better result)

 

Beta Carotene blood test - this GIs favorite fat soluable vitamin test was this, it also makes sense because I frequently have irritated/dry eyes.

 

ANOTHER endoscopy - this will be next week,  the previous doc on the first endoscopy had said "flattened mucosa was found in the duodenum, suspicious for celiac disease"  that biopsy returned as normal.   This new GI thinks differently, and would like several sampes to guarantee higher probability of yes or no.

 

 

 

Fingers.....crossed.

[LauraTX]

Awesome you got a good doctor to work with now!

[ezgoindude]

MARCH UPDATES:

 

I'll be posting this in separate sections, as I feel i'll need my own suptopic just to vent my frustrations over the past month and a half.  To summarize I pretty much spent $200 to say hi to a doctor....but back to that later....

 

I've been on an autoimmune paleo/scd like diet since the holidays last year with mixed results, I finally caved and again went back to basics on the SCD diet which I started Fri Feb 13th (wwwooooo creepy hah).

On a positive note I have learned many new things about my unknown condition.  It appears my body CANNOT HANDLE any carbohydrates.  Like none.  Even on the scd beginnners diet everything was going very well until I decided for the mashed cooked carrots.  were talking carrots that have been cooked for hours,  and those pretty much went throught me too!

 

Big nos:

All grains (dear sweet jesus I CANNOT have corn, that was worse symptoms than glutening)

Carrots

Plantains

more than 1/2 banana even then every once and awhile

Dairy

Soy

Gluten/wheat

Vinegars

Raw onion

Potato/sweet potato

Strawberries (maybe small amounts ok? a strawberry smoothie was too acidic... ugh)

 

What has me currently feeling on top of the world was two things:  discovering a low dose probiotic that my body seems to enjoy AND blueberries. 

 

I was always tired, cranky and SUPER thirsty, with really bad dry eyes.  Around the time I started making smoothies again with spinach kale and blueberries I stumbled upon the research of a ketogenic diet associated with thirst and body odors.... which had been slowly creeping up to me.  The blueberries offer I think carbs and sugars the leafy greens may not be able to provide?

 

Another plus I discovered is my body enjoys almond butter, only in respectable amounts.  Last time I had a poor reaction to them I had been depressed watching netflix going through about half a jar..... and somehow I expected to be able to digest that?!?!

 

In any note Imma whip up a quick chicken stirfry and come back to rant about my current doctor dilemmas and what few lab results i've gotten back.

[ezgoindude]

APRIL UPDATES:

 

Been awhile my friends!  Still undiagnosed but feeling much better, for reasons also unknown?  I as usual am in no pain, I sleep well, and other than what I eat I for the most part feel normal again.  My only complaints are my stools are formed but a long way to go before perfect (they float, sometimes pale, foul odor sometimes)  and my consistent battle for weight.  I feel much better but have lost a few pounds, currently weighing in at 136lbs.

 

At one point this year I began eating a high fat high protein diet (for the most part)  This is partly because I seem to have bad reactions to starch (Grains and potatoes give me similar reactions like gluten, ESPECIALLY corn.... boy oh boy).   I haven't hit the exact number, but once I hit a certain amount of fat my stools would get worse and I would get a slight dull pain or ache in the upper right quadrant of my body. 

 

My current GI then thinks hes found my miracle cure and thinks my pancreas is shot.... wow. (even though CT scan last year was clean)  We do a fecal fat test, fecal elastase test, and a beta carotene test.  What happens cracks me up... guess my pancreas is perfect?!?!?

 

Fecal fat test:  Normal

Fecal elastase test: over 500mcg/g  (normal)

Carotene test:  136 (almost THREE TIMES higher than normal,  wow thanks spinach i guess?)

 

I currently eat various baked/grilled meats, dark leafy greens (usually steamed, but sometimes raw salads), some squash and smoothies.  Again grains, and large amounts of sugar or fat can cause problems (i can eat blueberries but not bananas? whhaaa?)  I did discover that a little sodium bicarbonate a time or two a day (1/2 teaspoon)  in between meals has substantially calmed my "anxiety" and calmed my guts.  I will bring this up to my GI

 

Lastly,  I don't necessarily care much for a diagnosis any longer as the I'm seeing two GIs, one of which would like to do ANOTHER endoscopy to try and discover Celiac (and then what?) while the second GI thinks possible autoimmune disorder and will be perscribing me steroids.   At this point I have enough energy to move foward with my life.

I'm registered back into classes to finish working on my nursing degree, and would like to get back into the dating scene this summer,  which was near impossible a few months ago with how I was feeling and the various dr appts taking my time.  Goodnight guys

[nvsmom]

That's great!    I'm glad things are going so well for you.  

[ezgoindude]

Thanks nvsmom!

 

I'll have to suck it up and call it getting "well"... I'm still frustrated how I could eat something, get no reaction whatsoever, and 3 days later it comes out as foul odor, rotting wet just bleh formed blob.... yes TMI but dude, if my enzymes are good why is it not being absorbed? frustrating yes I do feel much better than when I first started this post in terms of my general well being, I've just always been a half glass empty to some?

[ezgoindude]

Went to the GI, considering everything is normal and my vitamin b12, beta carotene came back more than normal he's trying to tell me severe food allergy.  I finally got him to open his mind when I asked why that would give me a calprotectin result of 150, which is not crohns level but definitely a lot of inflammation last year.  He has perscribed me a 90 day supply of Budesonide.

 

He added that even though I'm struggling with weight and stools sometimes improve that unless i feel worse or lab results become abnormal he is only able to perscribe me a 90 day "trial", in which if I get a positive result we can diagnose under "intestinal permeability disorder" in which my body doesn't break down foods.... WTF just say I have an IBD or something already, making up random words...

 

In any case fingers crossed folks, I got a quote today on the Budesonide and it would be 330 DOLLARS for the steroids, i'll call back tomorrow and pray they have a general brand or something  (for your own humour, the tech said I was getting a great deal as steroids without insurance would be $985....wow)

[ezgoindude]

MAY UPDATES:

 

Alright, so I'm back talking with the doc I got the CT scan from last year.  The doctor who just prescribed me the two weeks of steroids wants to wait three months and in between go to a hematologist? for skin testing for allergens.  Yea, I'm not wasting my time on that.  I have dysbiosis, IBD, SIBO, something..... hell I only eat around white meat and non starchy veggies and still sometimes get problems. 

 

Anyways.. the two week trial of steroids did not help.  By day three I was having sleeping issues, my stools started to loosen up a bit and smelled even worse.  My two week trial ended this past sunday.  The day after I stopped however out of nowhere I had extreme urgency to use the restroom, and pretty much everything flushed out of me.  It again happened this morning, I have not reintroduced any new foods and I feel fine but now a have immediate urgency and have watery diarrhea.  (just want to point out todays stool was slightly more formed than right after I stopped the steroids, so i'm kind of healing???)

The GI says theres always a possibility of unknown IBD but with no pain and my body absorbing beta carotene ok and having the right amount of elastase and reacting poorly to steroids he says I'm a cookie cutter example of having Small Intestinal Bacterial Overgrowth. 

 

Next week I start one of THREE breath tests,  first its enulose syrup, next week I drink a soda (dr pepper for the first time in years!) and at the end of the week I drink a full glass of milk for the last test.  I finally got approved for another endoscopy, that will happen the third week of June.  I pushed it back further because I just got a promotion as manager at my job and it overwhelm my schedule with so many back to back tests.  Hopefully I get more answers among the chaos, as always your opinions and words of wisdom have always been appreciated.  I'll catch ya

[ezgoindude]

SEPT UPDATES: 

 

Wow, life has been busy!

 

 

I did all 3 SIBO breath tests, they came back negative. 

 

Beta Carotine tests and B12 came back extremely high above normal?!?!??!    I am NOT supplementing any vitamins this year except for vitamin d since that has shown very low several years ago when this all started.   Doc word for word tells me "congrats it  must be from all the spinach you eat"........ UGH

The GI doc gave me a two week trial of Cipro anyways,  I'd say it was a semi success as I felt ok with no reaction AND my stools no longer float to the top of the toliet.  I repeat, while I was taking antibiotics my stools would sink straight to the bottom instead of floating like they usually do.

 

I AGAIN just had to switch insurance companies as I got a new job in July and the insurance plan is better with the company, i'll be seeing the previous GI doc in a few weeks.

 

A few weeks after my cipro treatment my stools begain to float to the top of the toliet again.  I feel competely normal at this point but for occassional gas and diarrhea/loose stools IF I eat  something that is a potential trigger. 

 

 

 

 

Last time I saw the GI in june/july they've coined the term Extreme Intestinal Dysbiosis but we have no proof of this, so I remain undiagnosed. 

 

I'm pushing for another round of antibiotics, and an ultrasound for my gallbladder/liver area.  CT showed no stones last year, but I've had dull pain in the upper right quadrant now for months.

 

As usual I appreciate any of your words of wisdom, or thoughts / rants / opinions, and I will update with my next set of lab results.

[cyclinglady]

Wow! I always read your postings with great interest!

I will only comment on the elevated b-12. If your blood work is okay (no signs of leukemia, lymphoma, liver disease), then I would not worry. Mine is off the charts and I do not take supplements. It has been elevated for over 20 years (since I was first tested for b-12) and I am still alive. I even gave up fortified Soymilk but that did not make a dent in my levels. My folate levels are sky high too. My research has concluded that it is most likely a genetic thing.

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[icelandgirl]

I also enjoy your updates...thanks for continuing to share. I had high Vitamin B12 at one point as well...no clue why. The Dr wasn't concerned but I thought it was odd. I had it redrawn with my physical this year and it's now normal. No idea why...Haven't changed anything in the past year. So I've got nothing for you there...just know it's not just you.