New here but not new to CFS, need help!

[Belbyr]

Hi everyone, I don't want to write out a long sob story of my background and what I deal with, but I have to ask.

My worst symptom has always been my gut. I have chronic bad nausea, bad stomach pain, bloating, but surprisingly my lower portion seems to be ok'ish'. I never really get bound up nor do I never get the runs. My GI problems make up about 70% of my illness. Second would be chronic widespread muscle pain (like I did a crazy workout)

Dr. K at wake forest helped me out with trying to figure out what my gut is doing. I did have rapid gastric emptying when I ate the eggs... I was surprised since I feel full all the time, can't eat the volume I want, and have little appetite.

Ultrasound is all good, endoscopy good, colonoscopy good, no SIBO, lactulose, lactose, and fructose breath tests were all normal, EGG was normal even with the water loading part of it. No celiac disease, no signs of reflux either.

Have tried phenergan, zofran, compazine, reglan, domperidone, antispamodics, benadryl, emind, and I'm sure I'm forgetting some. None work... the only thing that has ever helped just a little has been Ativan, but even it is not all that effective.

I practically live at home and I would say 40% of my time is me being curled up, head down on the bathroom floor just fighting it out feeling like I have a stomach flu. This has been going on for 11 years.

I've been told I have POTS, dysautonomia, CFS/ME by different institutions. Everyone is running out of ideas...

Heat makes it worse. Intense short exercise makes it worse. Narcotics make it really bad.

 

[Dechi]

I don't have specific advice but I just want to say I am sorry you are so ill and I hope you get better soon. Someone will post shortly with useful ideas, I am sure ! ;-)

 

[Oberon]

The first question is have you tried dieting of any kind? If not it is still possible it will make a dramatic difference for you. You can have food sensitivities without having food allergies. For example: https://en.wikipedia.org/wiki/Non-celiac_gluten_sensitivity

If you have tried dieting what diets have you tried and how strict where you? Do you have any history of autoimmune disease in your family?

In terms of supplements have you tried using L-Glutamine?

 

[antherder]

Hi, @Belbyr, welcome to the forums!

Have you looked into mast cell issues? There's a separate forum on the topic here that might have some relevant information. Exercise releases histamine, and I think opiates do as well.

There are also some rare allergic disorders like eosinophillic gastritis/gastroenteritis and angioedema that can be difficult to diagnose with standard tests.

 

[Mary]

@Belbyr - I'm really sorry you're having such a rough time! A few things come to mind - the feeling of fullness and lack of appetite sound similar to what I experienced when my liver was overloaded with toxins, and my gallbladder was affected also. My digestion was thoroughly screwed up then. Doctors were unable to help me or figure out what was going on, but my chiropractor who does muscle testing quickly found my toxic liver - I ended up having to do a liver detox which was not fun but I was so much better afterwards. I had had heavy exposure to chemical solvents at I job I'd had a long time before and that was part of the problem.

The chiro also helped discovered that I was low in stomach acid and needed to take betaine HCL with pepsin with meals, and the constant feeling of fullness went away. I wasn't digesting anything properly in part due to low stomach acid. My digestion today is really good now, and none of these things were picked up on standard testing.

Somehow in all of that my gallbladder was also affected and the chiro gave me AF Betafood by Standard Process and it worked like magic.

Also, has anyone checked you out for food allergies? Even though you test negative for cecliac, you still might be allergic to wheat or at least have trouble with it and other grains. Dairy is also a huge culprit for many of us.

Welcome to the board and I hope you get some answers here --

 

[Belbyr]

In the beginning I tried several different diets. Wheat free for about 1-2 months. Dairy free for about 2 months. I even got crazy and tried a totally organic diet free of MSG and other man made chemicals. It was never really apparent to me that I felt better on these diets... The most I could say would be 'maybe' a little less gas but I'm not for sure.

I have done food allergy testing but my results were all over the board. It said I was slightly allergic to things like beef, egg, soy, wheat, dairy, chili pepper, bakers and brewers yeast, mustard, peanut, amaranth, banana, cranberry.

I even tried not eating for a week. Nothing...

 

[Oberon]

A few follow up questions for you:

1. When did your symptoms begin? Do you have any hunches on what may have caused them?

2. When you fasted for a week did you feel better at all? During your fast was there any point where you "cheated"?

3. Did you take electrolytes during your fast?

4. Have you had an ultrasound of your gallbladder or do you notice any extra symptoms when eating fatty foods?

5. Is there anything at all throughout your history that has at the very least helped with your symptoms?

6. Have you tried an elimination diet where you removed any potentially allegenic food groups such as Autoimmune Paleo or have you tried

7. Have you run any bloodwork on your liver function?

 

[Belbyr]

Symptoms began 2005 in the Fall. Was playing highschool football and just noticed I was out of energy and my stomach was hurting and losing appetite. Could it have been a football hit or a virus that went around, I don't remember. I just know I had a 2 weeks where I felt like I had a stomach virus and never got over it.

I never felt better during the fast. I was actually hospitalized and on IV fluids until I was somewhat stabilized, even though nothing led to me feeling better. I just came out of it a little.

Gall bladder testing is all good. Ultrasound, ejaction fraction test was good.

The only thing that seems to help a little is small doses of ativan. Curling up on the floor head down. Trying to stay cool helps and sometimes IV fluids.

I've tried just about ever elimination diet there is. Wheat, yeast, dairy, suger, tried all natural. Did each of these for about 1-2 months each.

Liver function has always been fine, no one has ever mentioned anything wrong. Endocrinology all checks out too.

I do test high for lactic acid most of the time.

 

[ljimbo423]

Could it have been a football hit

Head trauma can lead to intestinal permeability, also called leaky gut and many other gastrointestinal symptoms. Did your doctor rule out head trauma? Here are 2 links, the first one is to an abstract (short version) of the paper, the second one is to the full paper, explaining how and why head trauma causes gastrointestinal dysfunction.


https://www.ncbi.nlm.nih.gov/pubmed/26348611

http://www.jillcarnahan.com/wp-content/uploads/2016/06/alttherinhealthandmed.pdf

 

[Belbyr]

If this were the case, is there anything that could be done? Has it set off an autoimmune reaction/state that I could be in now?

My autonomic doctors are saying they strongly believe the majority of these autonomic disorders are now actually autoimmune diseases...

 

[ljimbo423]

If this were the case, is there anything that could be done? Has it set off an autoimmune reaction/state that I could be in now?

I think anything that causes a leaky gut or intestinal permeability, has the potential to cause immune system problems. When the gut is "leaky", toxins from bacteria in the gut called lipopolysaccharides get into the bloodstream causing an immune system reaction.

I haven't read a lot about TBI and gut dysfunction but I have read that vagus nerve stimulation is helpful.

The other thing that stands out for me reading your original post is maybe you have SIBO and they missed it. I have heard that the breath tests for SIBO are not 100% accurate, but it's the best test they have.

Something you might want to consider, is treating SIBO, even though the tests were negative, and see if you feel any improvement. I have found, with a lot of trial and error that a low carb diet, probiotics and antibiotic herbs, are essential to getting rid of SIBO.

 

[Belbyr]

I received treatment for SIBO even though I had one of the lowest negatives results for SIBO the doctor had seen...

Even though I feel like I have gastroparesis, I think my gi tract actually might be moving faster and contracting harder than it is supposed to, but that is speculation.