Question to Co-Founder David (sorry to put you on blast, I don't know too many others on here with "unsual" IBD)

[ezgoindude]

Good Evening!

I have floated between forums over the past few months with my digestive journey, and I have a general question for those who are living with the uncommon forms of IBD. (I remember your personal story on lymphocytic colitis david, I don't know of too many others on here as of yet)

A quick synapses on me, digestive issues for years, diarrhea and mild weight loss, all diseases show negative however very mild chronic inflammation in my bowels with a minor increase in eosinophils in my cecum. My current GI thinks Eosinophilic Gastroenteritis with a double whammy pancreatic exocrine insufficiency (we are currently testing to see any enzyme deficiencies, and he's interested to see the relation)

ANYWAYS TO THE QUESTION, lol:

For those of you with a rare form of ibd or unknown chronic struggles, have you needed or still take any drugs or medication? They have been testing and testing me for what will almost be 2 years now, and although diet and stress reduction has taken away about 85% of my problems I sometimes feel like i'm constantly walking on thin ice in terms of my health stability. (due to my "healthy response" to diet change, I am not taking anything other than over the counter pancreatic enzymes, docs orders)

Anyways I thought it be worth a shot to ask you, thanks again guys for the awesome forum

 

[David]

As my disease (Lymphocytic Colitis) does not (that they know of) lead to severe changes in bowel structure and health such as stricturing and/or fistulae, I felt comfortable not taking any traditional medications to control my disease. Now, there were times I was very tempted because of the frustration, misery, and symptoms, but I wanted to first see if I could change things with diet and lifestyle alterations.

In my opinion, the vast majority of people (like 99+%) of people with Crohn's disease or Ulcerative Colitis should be on traditional medications and use diet and lifestyle alterations as an adjunct. The potential threat of improperly managed inflammation is too great.

IBD such as Lymphocytic Colitis or Collagenous Colitis don't have quite the same threats but this isn't to discount how much they suck. Eosinophilic Gastroenteritis? I don't know enough to comment, sorry.

With LC and CC I feel it comes down to personal choice of what you're willing to put up with. If you just plain want some immediate relief there's absolutely nothing wrong with taking traditional medications. Are there risk of side effects? Sure. But being miserable, anxious, and stressed releases plenty of hormones into your system that are shown to have deleterious effects as well. On the other hand, if the idea of taking traditional meds doesn't sit well with you and you want to take a more holistic approach and aren't so miserable that you feel comfortable doing so, go for it.

 

[ezgoindude]

Thanks for the quick response David, I can't thank everyone on here enough on how honest we are in our symptoms and what we do with them on a daily basis....

I've spent thousands of dollars just so he can confirm: "well its not crohns, UC, or cancer, that's good"........ well that's just peachy! From what the doctor describes is more and more recently people are coming in with disease that do not fit the book spot on.

Meanwhile I continue to loose weight, every complex carbohydrate seems to go right through me, etc; but like you put it, I do not have any internal physiological changes from all these years other than a mild elevated eosinophil count.

I'm not comfortable with drugs but there are a few who mention it was the tipping point that settled everything down, and I tend to be impatient as other than school and work my life is centered on making a food journal and cooking everything for myself.

 

[David]

Has your doctor suggested any specific medications to try?

 

[my little penguin]

EGE is more common in kids
Cchmc ( cinninatti childrens hospital medical center ) and national jewish denver Colorado are two of the top kiddie places for Egids including EGE .
Most egids are treated with diet and or swallowed steriods the lower it goes ( EC ) the more the meds resemble crohns meds .
Might be worth call them to see if they recommend an adult place .
I know a few in at cchmc -cced have seen adukt patients
Apfed and cure are two national groups
http://www.apfed.org/drupal/drupal/index.php

Cure
http://curedfoundation.org/site/

Good luck

 

[my little penguin]

They should send you to an allergist for patch testing as well as rast/skin tests.
Some have you go top eight free of allergens
Milk
Eggs
Soy
Wheat
Tree nuts
Peanuts
Fish
Shellfish
Others place the patient on swallowed Flovent /
After that any or all food including spices could be the trigger.
Some need firmula only ( amino acids -elecare /neocate )
While they soley trial foods
One single food for three months then
Till you get a full diet again typically over 50 foods then formula can be stopped

 

[my little penguin]

http://www.apfed.org/drupal/drupal/sites/default/files/files/EGID FAQ.pdf

 

[ezgoindude]

Evening guys!

Thank you on your patience, I work at a hotel and super weekend = complete chaos. Just got a moment to see your replies.

Sup David, yeah, so far nothing crazy. I was on a proton pump inhibitor for a few months when I had given myself an ulcer drinking apple cider vinegar every day (whoops)
I'll be completely fine day to day and then BAM, I have probably about 15 minutes to find a bathroom. stools are not necessarily loose, but they do float and can sometimes smells (very little mucous, if its even mucous). Based on that he wanted to give me dicyclomine, which appears slows down my guts. But when I go to the pharmacy for pickup it clearly says in all caps: DO NOT TAKE IF YOU HAVE CHRONIC INFLAMMATION. Well duh!! idk if its chronic but I got inflammation somewhere!!

I've had to pause on the testing until my insurance kicks in this month but my last visit the doc recommended write down what foods i can/can't eat and if I keep losing weight or other symptoms ever come back he can rush me in and give me steroids. Like you mentioned, I'm very lucky in that this isn't extremely violent, I'd like to press my luck on more research before they throw more pills that don't match.....

Tell me if I'm too intrusive david or if I should private message but have you ever taken a test for anemia? or fat soluble vitamins? I'm interested in pressing with my low/modest weight if specific vitamins or going right through me or if its everything, like I mentioned complex carbohydrates, dairy, and gluten seem to be the current atom bomb in this internal world war, lol

 

[ezgoindude]

sup M.L.P!

yeah I'm currently stuck in Arizona for a minimum for 4 more years to hopefully get into Nursing school! (I at least find this with a little irony, lol) and I just signed up for some obamacare, so I'm keeping my fingers cross on where to continue my journey as I AM DONE with my nark primary care doctor, and my previous "2nd" GI doc was very informative, he is currently not showing as an option for my new plan.... bummer.

I'll tell you what, you're quote explaining 2 or 3 months to test ONE thing..... so true. In almost 2 years I can comfortably only enjoy 20 different foods not including herbs. I tried adding organic corn tortillas last week and apples and OH BOY, loose stools come back with a vengeance. Now whether it was the corn or the apples..... oui, its a work in progress, and here its been 6 days and I'm still getting things back into "sync"

I do not wish to drag this any longer, I am in a combination of fascinated and pi$$ed that in 2 years we've but just scratched the surface of an origin.....personally my next push is for vitamins, bacteria, and enzyme levels. I've heard of stool tests for pathogens, they've gotten enough of my crap I don't think a little more would hurt.

 

[David]

I've had plenty of CBC's and nothing even hinted at anemia (and I eat plenty of beef, liverwurst, and high iron greens) so additional testing was never done. I'm not sure what you mean by fat soluble vitamins though. You mean have I been tested for stuff like vitamin D levels?

I assume you were tested for Celiac, yes?

 

[ezgoindude]

Good afternoon! was quickly browsing the web before work, i'm calling tomorrow off, all of my sinuses are done. I'm sorry, yes fat soluble vitamins like vitamin A, D, E, and K.

Yes my celiac testing; I could write a ten page paper over the details, but to summarize, is currently inconclusive.
The blood came back negative, but I show low IgA which hinted towards low immunity but the doc brushed it off as my WBC and RBC count was normal....
I have the genetics to be "extremely elevated (1 out of 7 chance)" to have celiac disease but again without blood markers doc says no.
With my endoscopy it was visually noted my duodenum looked completely flat, highly suspect of celiac disease was the docs own words. Biopsy comes back, says my duodenum is normal. Yea, Doctor didn't have too much to say then but "sounds good", and I wasn't about to go through an endoscopy/colonscopy again so he can grab more samples. I'm highly suspect I probably have 8 different things going on at once, I wish they could focus down to one thing. Our only reasonable fact was my calprotectin marker, there is a low level of inflammation, but the doc points the amount present is lower than most IBD patients in remission, though I've been recently seeing in scientific literature calprotectin is used for many other forms of disease than just IBD. It there hadn't been visual evidence of me losing weight last year they had still planned to enlist IBS.

My current guaranteed nos are all grains/wheat, most complex carbs, a few FODMAPS, and high fat/red meat. All of these things will cause chaos and rush through me.

 

[David]

I've had D and K done and both are fine.

As you've experienced issues with gluten and visually he suspected celiac, I personally would treat myself as if I was celiac.

 

[my little penguin]

One word of advice to discuss with your docs( not a doc btw)
Single ingredient items tend to be easier to help you figure out what is what
So corn tortillas have been processed with others things so the could be adding to your issues
Kids tend to trial
Potatoes
So that give you potatoe flour , chips, fries , mashed , baked etc..
Most gi give salt as a freebie but oil can widely vary by docs
Same way with apples sometimes one form is more of an issue than others
Apple crisps , dehydrated chips

 

[ezgoindude]

Oh boy! up late and can't sleep, thought i'd say hi. Yeah you're definitely in my kind of vibes David, the few GI docs all claim tho the calprotectin levels ONLY relate to forms of IBD, which there are medical reports online that say differently, so it's been extremely difficult looking into combinations of other things that I could have that's making it worse (i'm 26, most go "oh you're lean and healthy what are you doing here?!?! haha... these guys geesh) I'd really like to see a solid brown poop, it would probably make me rest easy

hey M.L.P!

The past solid year I have exclusively done just an ingredient or so at a time. I know everyone has their own personal nos, but from eating in almost all forms these are the foods i'm ok/not ok with.

NO:
Corn (just tried organic corn tortillas, with nothing in them)
Quinoa (comes out the same way it entered, nasty)
Rice (sadly both kinds, even basmati!)
Wheat
Dairy (gassy and oily stools)
Anything very fatty (I spent days making homemade bone broth, and only hours for my poor response)
Beans (kinda, this one has been iffy but they dont make me feel better so...)
Soy (tried multiple teas/coffees leading to immediate stomach burns)
Eggs (at least all forms when by themselves, haven't tried in cooking, get extremely gassy)
Red Meat (I probably should test this more, but I've had steak twice and in both scenarios I've had painful bloating, which I've never had, and rushed bathroom breaks)

OK:
Zucchini
Kale/Chard/Lettuces/dark leafy greens (in large amounts lightly cooked, but also one of the few things ok raw)
Spaghetti squash
So far all green herbs, cumin, tumeric, some garlic, onion powder but no onion
blueberries, small amounts of banana when very ripe
Almond butter/almond milk (thank god he gave me something that has substance, so good!)
cucumber/radish/small amounts of ginger (very potent!)
White meats, small amounts of seafood
Olive Oil in controlled amounts

anything else not described is either a gray area or not tested at this time.
as I side note I don't know if its helped you guys as well, but pancreatin had quickly turned some of my general complaints around. Without that, I think all foods would give some degree of pain


And again thanks David for originally answering my question, most moderators in other forums tend to not speak much, especially to the questions I'm sure have been asked dozens of times.

Goodnight guys