Anyone know a good digestive or maybe celiac forum?

Retitled my post to get to the point. Looking for some New forums for gut questions. The gut clinic, basically gave up on me since I improved some on my own. I can no longer digest fats sufficiently (testing proved this) and they don’t know why. Besides some basic tests they did nothing to actually Solve the problem. The rest of my health feels fine. The last appointment the doctor said maybe my gluten sensitivity is actually celiac disease and I just do not develop full antibodies towards it since I have a tested low immune system of under range IgG and IGa. That might be true but that might be an excuse just to say there done with me too.

This lyme forum is somewhat helpful for digestive issues but is limited to just a handful of people with experience in this area. Celiac forum on this website is completely dead , girly from here is the only one that answers over there!

My recent gut story and recap is here if you have time:

My gut was in really good shape last couple years sticking to my gluten-free and Leap MRT (food tested with my blood) diet, until June when I attended a local social backyard barbecue with some people I know. My gut started to improve in September. But it’s still not as normal as it was before all this happened.

So I was pretty careful with what I was eating at the BBQ but not careful enough, and yes I probably consumed a little bit of gluten along with a lot of barbecued meat.

TMI - So I was constipated a couple days after that which is extremely rare for me then all the sudden SIBO type symptoms started to happen after that.

I started self treating with supplements for SIBO, things that I did in the past when, unfortunately healthcare could not detect SIBO then either yet I seemed to have all the symptoms of it. I also treated myself with the same past candida supplements that I had success with many times before.

So I took several drives to the digestive clinic. Other than looking up your back door after 50 years old they seem to be useless for other things. No different this time either.

They can’t detect SIBO, they tell me a candida does not really exist, so I get several stool tests which they find out what I told them - that I can no longer digest fats, (That’s what makes floaters float).

There was also a pancreas test I don’t remember what it was but it is for figuring out if the pancreas is making sufficient digestive enzymes the three main ones, Which, per this test, my pancreas does this really well.I asked him about a bile test (after he went on and on forever about with excuses) what I figured out is it’s just too difficult for them to do it so they don’t. He said if I had a gallbladder or bile duct problem I would know ASAP as the symptoms are unbearable.

So the first doctor who was concerned with my pancreas and sent me to this above pancreas doctor who said your pancreas is fine, and that’s not why you have floaters. But he doesn’t know why, and says if my bile acid supplement seems to help -to keep taking that.

My first appointment was in July and my last appointment was a couple days ago, only to be told the same thing they don’t know why. This is frustrating , not as frustrating as those of you with a raging Lyme symptoms but still frustrating.

So my Jarrow brand bovine bile does seem to help. But I cannot take the recommended amount as that seems to cause acid reflux. After googling this happens to others as well if you take it after a meal. It appears that it’s important to take before a meal.

***I’m a little too mentally burnt out to search more for reasons of not digesting fats. If any of you have ideas let me know****

I unintentionally lost 10 pounds during this. I am comfortable at the weight I’m at right now but this just shows that I’m not getting proper nutrition. I would normally have to exercise a lot to be 10 pounds less. And I didn’t exercise much this summer. The unusual heat this summer gave me a slug like motivation, and now it was only 5° This AM.

*****So the summary of my summary is -lower than suggested doses of bovine bile helps but not completely eliminate my toilet symptoms of lighter colored “floaters” and not being able to absorb fats. ****

https://my.clevelandclinic.org/health/diseases/22722-malabsorption

It’s funny I can read about all sorts of digestive issues from the Cleveland clinic website which is a conventional clinic. The the place I went to offered hardly no help at all, much less information.

But one thing I’ve read in numerous places is people that have celiac disease I have more problems than just that with their gut lining. There’s also a new drug I think that is still in, or maybe just got out of the trial period. That is for people with celiac disease and Crohn’s , And gut permeability. It apparently heals the digestive tract sometimes. I asked the clinic I went to about it , they knew nothing.

Post Edited (astroman) : 12/4/2022 10:52:23 AM (GMT-8)

hey Astro, the forum is v quiet these days - except for a few of the old timers it seems
its a shame as there's not much active discussion when its so slow

anyway - ref your issues

to my mind - i would tend to interpret the various clues you mention as follows

1, pale floating bm's are a pretty good indication of poor bile flow (bile is what turns them dark greenish brown).
2, however, pancreatic tests seem to show no issue with actual production of the enzymes needed to digest fats
3, but bile is also needed - as well as enzymes - to digest fats properly - so this also aligns to a bile flow issue
4, adding additional bile in supplemental form seems to help symptoms resolve - again consistent with poor exogenous bile flow.

so from there we can start to look into what might be causing it
all of the bile is made in the liver in a slow but continuous flow.
it is then supposed to be stored in the gall bladder until a tiny sensory gland just underneath the sphincter at the bottom of the stomach, registers the fat content of the chime ( part digested food from the stomach) when it enters, and tells the gall bladder how much bile is needed / how much to contract.
typically anything over 5g of fat in a meal starts to cause a signal for the gall bladder to contract

so, logically, a number of things could be going on:

1, the liver could be making sufficient bile - but something is going wrong with the storage / release mechanism
so that an insufficient pulse of bile goes into the chime.

2, the liver might not be making the needed quality of bile in the first instance - and therefore - even though the signal is sent - and gall bladder contracts - insufficient bile is stored - and so insufficient bile is sent by the gall bladder

3, there could be some issue with the signalling pathway such that the bile pulse signal is not sent to the gall bladder ( i have not heard of this actually happening - but given the neuropathies present in lyme et al - and the fact that autonomic functions are often affected - i guess its possible )

ref how to try and figure out which might be the cause in your case:

-liver function tests can provide some clues ( not always - but sometimes there is a pattern)
blockage in biliary tree tends to cause a certain pattern in the enzymes - some elevated more than others.

-ejection fraction tests of the gall bladder are a common method - done with ultrasound i think. the gall bladder is stimulated and how much of is volume its able to pump out is measured.

-then there are some DIY approaches -
eg
- some experiments where you eat a high fat meal - but no gluten or carbs - so basically a controlled experiment where you isolate the fat as variable - to see if its the fat that is driving the effect

- therapeutic trial of liver and gall bladder flushes - with grapefruit juice and olive oil - to see if that helps clear any potential blockages

gall bladder disease is v common with Lyme etc. it showed up in my case before any other symptoms and i had to dig into the topic to cure it without going in for surgery. some LLMDs like Girlies Dr J say something like 30% or more of his patients have it

its typically v painful and comes in the form of attacks after a fatty meal - but not always
in some people it can smoulder unnoticed for many years.
sometimes they can see stones in an ultrasound scan - sometimes not - depends on the makeup of the stones.

the gall bladder can also just get gradually filled up with a kind of sludge that stops it functioning.

there is even a condition called porcelain gall bladder - where the gall bladder calcifies over time until it is a solid lump of mineral! ( its pretty rare)

hope its of some help

all the best

astroman said...
Garzi - That’s some good information and unfortunately none of that deeper stuff was mentioned by the G.I. clinic I went to. And they are recognized as best gut clinic in my state. Obviously that does not mean they are the best.Seems like they only recognize extreme conditions. Such as them telling me if something was wrong with my gallbladder I would know ASAP because it would be very alarming, more like an emergency.

sounds like i should start charging!! lol

seriously - conventional gut doctors are a waste of time - i have been to see many of them.
they are like endocrinologists - big bucks but really just reading from a very slim rule book - and blinkered too.
if its not in their book - it doesn't exit.

i got to learn what i did because i was writhing around on the floor every time after eating a single egg - and all the gut doctors had to say was "oh, yes well that's your gall bladder - we need to take it out"
not even the slightest curiosity in why that might be happening in a fit 40 something male.

i asked - "but doesn't it have i job to do - so don't i need it?" .....he just looked at me and blinked....

i know profound ignorance when i see it.
and the casual nonchalance with with they were going to remove a useful part of my body was alarming!

took me a while- but i can now eat as much fat as i like - which is a good thing as i changed to a keto diet a few years ago and its helped me a lot - over 100grams a day with no surgery and an intact functioning gall bladder. Something they will still tell is not possible.

functional medicine doctors are likely to be better on gut related stuff - their moto is along the lines of "all illness begins in the gut" - so its big on their radar

you may need a conventional one for ejection fraction tests though

nothing to loose from the DIY trials though so you could start there

You reminded me about the celiac forum….

My son does get somewhat wreckless with his gf diet at times.
But, he can tell when he has eaten gluten - won’t go into the details of that … lol

He was diagnosed on labs and response to gluten products.
The gold standard is a biopsy - he (nor I) wanted that - so the “deal” was he promised to be gf forever and he wouldn’t have to get the biopsy.

Seems like "gastritis" is just a label for general gut issues LOL. An excuse to do no more investigation.

Its "fibromyalgia" for the gut.

[i was told with complete straight face "There is no cause, its just something that happens to some people"

i now know to translate that into - "We don't know and we would rather you didn't ask those questions" ]

- and we then pay them!! Errr................

MargaritaLyme said...
So here is my question-if our thyroid is inflamed, our g.I. Tract is inflamed, our cns is inflamed, due to in my opinion to an infectious pathogen(s), can a therapy be developed to help the immune system not react to it/them?

The big pharmas have prob been trying to make a pill do that for some time. Would maybe be some sort of antibody blockers.(?) they dont understand much about the immune system as it stands today though.

There is a new pill for "leaky" gut lining. I forget the name. It just past trials this year. Not to long ago they said that leaky gut is fake, then created the term "gut permeability" a few years after lol. Now a pill for it.

It does not exist Untill...they make a pill for it.

Yeah, what a bummer for now. Not to sound like I hijacked your gastro thread Astro, but I believe there is true relevance here. If science could control my immune response to infection, my gastrointestinal, central nervous and endocrine systems would not be as disrupted. And somehow, immune modulation makes more sense to me.

Fronton - several other chronicly low tests made me think. Those were;
1)my low cd57 never recovered. That is an average look at a handful of killer cells- several types if I remember correctly.
2)And my white blood cell count became low. Mostly lymphocytes.
3)low globulin protein which make up immune cells

So I went to a functional MD with classes of tests below what’s ubove there. Then I kept doing more, more tests. Then I went to a immune specialist.

I have under range igg, iga, low in range B cells, and some low in range killer cells or T cells (not sure)

**I don’t get sick. ** not viruses anyway. Bacterial- that’s my immune weak point. I do get cavities for no reason to now which is obviously bacterial. So I’m now using CariFree oral products.

The immune cell levels I do have apparently work better than the labs look - That was their reason for my not getting sick often, Or hardly ever actually.

Years of infection can kill immune cells. You don’t make new ones after a certain age apparently.

So I was dx’d with “common variable immune dificiency” and immunoglobulina (or something that sounds like that ) about 4 years ago, which affects 1 in 25,000 people per Wikipedia. I’m guessing there’s more people with or after lyme that have this condition but have not investigated into it.

I have no actual tick symptoms anymore.

I get tested yearly to monitor immune levels. So far it’s the same.

IVIG is usually not insurance covered until it’s proven that you need it to function. Without insurance, it’s extremely speedy. Sounds like an expensive every 6 week habit.

(If the inflation was not so crazy, I sometimes think I should be checking off my bucket list a little more.)

Post Edited (astroman) : 12/6/2022 10:46:14 PM (GMT-8)