Update on me... Need Opinions

hoosier1 · Post by **hoosier1** » Sat Oct 17, 2015 4:31 pm

Hello my friends (Tex, Polly, Gabes, Joe, anyone else I have missed)...

The last time I checked in I was describing my chronic bloating and distention problems and the twisting pain in my sternum that is so much worse after I eat, and lasts for several hours.. Well since my last visit, I have had a lot of things done. I had a gastric emptying test - where you eat radioactive eggs - and watch the time it takes to clear the stomach - PASSED. I had an endoscopy where they ruled out H Pylori and Hiatal Hernia - PASSED. I swallowed a pill camera that travelled through my small bowel, taking a million pictures along the way. It saw a couple of areas that look narrowed - but that could have been a spasm (so surgery was discussed - more on this later). No strictures, all "looked" OK - PASSED (i.e. no Chrons). I had the lactulose breath test for SIBO - MARGINAL FAIL. Then, I underwent an exploratory laparotomy to confirm/deny the results of the pill camera. They removed my appendix as a precaution - it looked OK. The surgeon cut some scar tissue in my lower abdomen around my bowels. She said my bowels looked good externally. She was hopeful I would feel some improvement to my most troublesome symptoms - which again are - early post-prandial fullness, bloating/distention, pain deep in my sternum (oh yeah, had a full heart workup, and it is fine), and fatigue. FYI, I find it odd that I had any scar tissue in my abdominal area because I have never had surgery before but surgeon said it could be the result of an inflammatory process - or - it is just my anatomy. Anyways, I am 5 weeks post-op and my symptoms remain, and I feel, are worsening. And now I am short an appendix (don't care really).

So back to the GI doc who prescribed a week of Flagyl followed by Fluconozole to battle the SIBO. He also gave me Pepsid. Still the same after all this. My gall bladder was evaluated a year ago and had a good ejection fraction - though I still wonder if it could be the problem due to the centered, epi-gastric pain and pressure. And oh yeah, I have been compliant for about 2 solid months to GF, DF, SF diet - doing Wheat Belly.

So I need you all to put on your thinking caps as to why I look like I have a pressurized Buddha Belly on my very thin frame. My appetite is suppressed but it is mostly out of fear of eating I think. I have lost some weight but not an alarming amount as of yet. My Amylase and Lipase levels are in normal ranges. My bowel movements - frankly - suck, and have even before the Flagyl. Light in color, 3 or four in the first 2 hours of waking, fluffly/ragged/unformed pieces to thin ropey things. Nothing that the Bristol chart would be proud to display.

I appreciate your opinions.

Rich

Post by **tex** » Sat Oct 17, 2015 5:19 pm

Hi Rich,

I'm sorry to read that your symptoms seem so resolute. Lemme think about this a bit.

In the meantime, has your stomach acidity ever been checked (to see if it is adequate)? Or have you ever tried using Betaine HCL? The reason I ask is for some odd reason, all GI docs assume that anyone who has certain digestive issues has excess stomach acid, even though the problem is almost always exactly the opposite — too little acidity. So they prescribe an H2 blocker, or worse yet, a PPI.

As we get older, we lose some of our ability to produce an adequate supply of stomach acid, and without a sufficiently low pH, our stomach cannot properly begin the digestive process. Instead, the food just begins to spoil, producing gas and bloating, and resulting in D, because if the first step in digestion fails, so will the subsequent steps.

Tex

hoosier1 · Post by **hoosier1** » Sat Oct 17, 2015 5:35 pm

Hi Tex!!!

So good to hear from you. I am always thrilled to have Professor/Fellow Engineer Tex on my case!

I have just recently started playing with Betaine HCL and have recently read articles about people who drink apple cider vinegar to achieve the same result. The SCDLifestyle site has some good info on this. So I have a bottle of HCL. And they say you just keep increasing the supplement until you feel burning and then you know when to back off.

Now knowing that my gastric emptying study PASSED, i.e. my stomach churns food and send it to my small bowel within the prescribed time, would you still think that acid levels could be the issue? I have no ulcer, and my stomach tissue looked good at endo per my GI.

I look forward to your help. Feeling pretty crappy - no pun intended.

Rich

Post by **tex** » Sat Oct 17, 2015 7:34 pm

TBH, I'm not sure that stomach emptying time is related to the average pH level in the stomach. PH distribution in the stomach follows a rather complex matrix during digestion (higher average pH at the proximal end, and lower average pH at the distal end), but it is what it is, and I doubt that the actual average pH level significantly affects emptying time. The average pH will affect the degree of digestion, however.

In addition to the digestion time programmed by the enteric nervous system, it appears that stomach emptying time may depend on downstream conditions, in some cases. IOW, if the pH of chyme in the small intestine is below 3.5-4, that will activate reflexes to inhibit stomach emptying until the pancreas can supply sufficient bicarbonate to raise the pH to a more neutral level. This is presumably a protective measure because the duodenum is not designed to handle the low pH levels typically seen in the stomach. Lower pH levels could digest the mucosa of the duodenum, were it not for this mechanism.

So I would think that some testing with Betaine HCL might show benefits. Obviously going the other way (raising the pH with Pepsid) didn't help.

Tex

hoosier1 · Post by **hoosier1** » Sat Oct 17, 2015 8:29 pm

Thanks Tex,

I have been reading much about HCL tonight. Going to start supplementing each meal to evaluate the difference. Short of this, I really don't know what else to try. As I have been on a higher protein diet, it makes sense the my stomach need more help in the digestion department. This problem was intermittent about 2 years ago and now is chronic and my distention is always noticeable. I look 5 months pregnant. And its not fat.

Will also call my GI to see about the Heidelberg test but I am not going to wait for that to start the HCL regimen. That test being developed by the Germans, I sure hope VW didn't have anything to do with the protocol :) I am beginning to think I may have some sort of peripheral neuropathy that is affecting my digestion, some sort of idiopathic gastroparesis. I fit the profile.

Thanks for your help and I will keep you apprised. FYI, I was reading about people taking Questran for BAD. Before I was diagnosed many years ago, and tagged with IBS, I was prescribed Questran. It did nothing for me, in powder (that was all they had at the time), and later pill form. If memory serves I was very nauseaus taking it and it tended to bind me up in a weird way. Hard drug to take. I am glad it is helping others.

Rich

Post by **tex** » Sat Oct 17, 2015 9:12 pm

Rich wrote:I am beginning to think I may have some sort of peripheral neuropathy that is affecting my digestion, some sort of idiopathic gastroparesis. I fit the profile.

That's not impossible, IMO. I have permanent damage to part of my enteric nervous system. Before my gut healed, I lost the ability to feel hunger (the old, familiar hunger pangs). That was about 10 or 11 years ago. If I don't go by the time, or eventually notice that I'm getting weaker, I would be totally oblivious to a need to eat. A few months ago I posted that I thought that my ability to sense hunger was returning, but apparently that was a false alarm, because it disappeared again. Anyway, such nerve damage seems to be possible, especially if we run dangerously low on vitamin B-12 and/or magnesium for a while.

I agree that bile acid sequestrants aren't for everyone. And I can certainly see the justification in your concerns about VW's management possibly having a hand in the development of that test — you would pass it with flying colors every time.

Tex

hoosier1 · Post by **hoosier1** » Sun Oct 18, 2015 6:13 am

Your lack of natural hunger pangs sounds suspiciously familiar, Tex. I think the radio-labelled egg test that I had for gastroparesis, and reportedly passed, evaluates just one small part of the digestive process. My problem "feels" more systemic and involved, and sadly, progressive. The one thing I have learned through all of this is that full comprehension of the body's electrical systems is still very elusive to the medical community. Even my last visit to Cleveland Clinic, where they looked at an MRI of my neck with slight disc displacement, admitted this. I guess this is why Lyrica is so popular, and IMO at least for me, ineffective. I am so not a fan of merely treating the symptoms as opposed to the root cause with drugs in that class.

But, I am going to incorporate HCL into my diet today. It makes a lot off sense. I read that stress can even shut down our acid production since digestion gets a back seat during the fight or flight response. And even though I have been off work the last 6 weeks due to surgery, and not away from home this entire time (kind of nice, but kind of weird too), I still feel a latent level of stress that I cannot seem to shake - life I think.

Post by **tex** » Sun Oct 18, 2015 9:12 am

Rich wrote:I read that stress can even shut down our acid production since digestion gets a back seat during the fight or flight response.

OK, this is just thinking out loud here, but yes, not only does stress seem to be a prerequisite to the development of MC, but I've sometimes wondered if some/many of us might have altered/corrupot stress response due to nerve damage. This could be why stress plays such a large part in the etiology of MC. Perhaps MC is initiated as a digestive system problem, but it is perpetuated (becomes a chronic syndrome) as a result of a neurological issue. There is some evidence that this may be the case with celiac disease, also.

Here's my logic on that:

Research shows that something like as many as 26 % of the general population has either paucicellular or classic LC.

Paucicellular and Asymptomatic Lymphocytic Colitis

But obviously only a relatively small percentage of cases become a chronic problem. So what I'm saying is that maybe only those who experience nerve damage during their reactions become chronic cases.

Tex

Gabes-Apg · Post by **Gabes-Apg** » Tue Oct 20, 2015 9:53 pm

Rich,
I am stumped what it might be given all the test outcomes....

TEx's post above makes a lot of sense and the nerve damage would explain multiple symptoms...

Linda, has had long term acid issues, and has delved into the area of oxidative stress... Hopefully she will chime in...

Thinking of the ongoing issues and possible link to nerve damage, do you use magnesium sprays/supplements??? Majority of nerve issues can be linked to magnesium deficiency...