Gi problems with fibromyalgia

Before I was diagnosed with fibromyalgia, i started having some strange Gi problems.

sx's

Abdominal hardness and bloating.

some mild painful discomfort at times.

chest pressure

Gerd

appettie problems

I saw a Gi specialist.

He did an upper endoscopy that was essentially normal.

A Ct scan that was normal.

He says i have functional Gi disorder.

I'm having Gi problems but nothing can be found, so its nothing serious.

Ive read that people with FM tend to have Gi problems like IBS.

Sometimes i wonder if the Gi problem triggered the fibro or maybe it was just the first of my symptoms, who knows.

 

Go back to the GI and ask for a barium swallow, manometry study, ph test, and a stomach emptying test.

There are 2 schools when it comes to GI and digestive systems.

1st school is the GI specialist. They will want to put you on antacid/ acid neutralising agents to "cure" your pain.

2nd school is the naturapathy/nutritienist. They think a non acidic stomach is a dud stomach which is the cause of all Gastro issues...

I don't know who to believe, but am having some lower abdominal pain myself, have done CT, Ultrasound and will be getting a royal endoscope this coming Tuesday. Hopefully, they will find something, otherwise, all the pain for nothing!

There's also a low stomach acid test, using stomach enzyme tablet with Betaine Hydrochloride. I haven't done it yet as I'm waiting for the outcome from the endoscope expedition.

I had a egd on Halloween day. I had been in the er with terrible stomach pain a couple of weeks before. The er dr thought it was my gall bladder but the Gi wanted to check for ulcers. I have had a history of ulcers since i had bleeding ulcers at age 13. (i am 48 now, so you can imagine.) They found no cancer or ulcers. Thank Goodness. But they did reinforce the fact that i have gastric paresis. Which means that my stomach does not empty as quickly as it should. Some foods literally rots in my stomach causing me to get sick. I try not to eat too much lettuce as that is a bad one.

I am diabetic and apparently that is common. I take pantoprazole and sulcrafate. It helps.

Most GI docs are clueless. Attaching a label to a problem and finding a medication seems to be what most doctors are about.

Mine started with total liquid stools for 10 days, lost 10 pounds, then resolved, then 3 months later diarrhea started again and I wasn't digesting and absorbing food well at all. In the meantime, I had developed muscle spasms and cognitive dysfunction including mixing up words and difficulty expressing ideas. Insomnia came later along with a whole truckload of symptoms that accumulated over time.

The GI doc I saw dx "post-infectious motility disorder" even though there was no indication or proof that I had ever had an infection. I could have had one ... but there were no symptoms except diarrhea.
The only test he ran was one test for Giardia and it came back negative.
(Beware of Levsin. I had horrific side-effects and abandoned it immediately.)

Doctors are so textbook. It's the same protocol for everyone ...

I eventually found out after several years of dietary challenge that it was specifically GLUTEN and later also yeasts that I could not tolerate. It took a long time to figure it out because my celiac tests came back normal and the GI doc told me I could eat anything I wanted!!!

It took months to heal the damage from gluten. That was 15 years ago, and I still cannot tolerate even a speck of it. Furthermore, I cannot tolerate gluten free oats in any form. The avenin in oats is similar to gluten, and for me it is poison.

Do your own work. Try a strictly gluten free diet for 3 weeks and then take a day and eat a lot of pasta or something. You will know ...

When I was having problems, most doctors had never heard of non-celiac gluten intolerance. Now many of them are familiar with it, and in any case, dietary challenge is the proof.
I saw a urologist this week who agreed with me and told me his wife also has to avoid gluten but her tests were negative. He told me the celiac tests are not reliable. It was a relief to have this confirmation from a specialist (who is very recognized in his field). Time was when they would accuse a person of having a psychiatric issue :>( if celiac tests were normal.

Mast cells are a component of all inflammatory issues -- migraine, interstitial cystitis, IBS, and the list goes on.

Mast cells are part of the immune system. They form part of an early warning system if there is an injury or infection. When stimulated, they release chemicals that cause an inflammation in the area. Two of the chemicals that are produced by mast cells are histamine and heparin. Histamine, the most important chemical, causes capillary walls to become more permeable.

This might be why intestinal permeability occurs in so many people. It starts with a hidden food allergy or intolerance or infection and once the intestine becomes permeable, multiple food allergies or sensitivities develop over time as the proteins are able to pass directly into the blood stream. These proteins making their way to the brain could trigger migraine. MS has a known mast cell component. I know a woman who fixed her severe MS issues with a strict diet and she is off all meds and running marathons, whereas she was in a wheelchair and on multiple medications per her doctors until she took responsibility for her own health.

Crohn's is known to have a yeast origin, so people with Crohn's and/or UC might want to look at yeast specifically and that means a strict yeast-free diet in addition to gluten-free. I do not have Crohn's or UC but currently have to avoid vinegars and anything derived from yeast including kefir and other cultured foods. These will cause immediate interstitial cystitis flares and vulvar burning.

Until research catches up with answers to all these maladies, we really do have to do our own work.
Also, just putting a band-aid on the problem is not the answer. Medications to mask symptoms are band-aids. I have gotten to the point where I am extremely intolerant of most meds and currently I take nothing except a little melatonin and just recently I am trialing 5-HTP for sleep. All meds have side-effects, which differ between people, so how would one know if new symptoms are a result of meds or the body breaking down on its own?

In response to Fibro$ux, acid suppressants were never intended to be used long term. My sister has been on them for years and her bones are crumbling. Also, they shut down normal acid production so the body rebounds with more and more. It is a vicious cycle. Again, this is the band-aid approach and fixes nothing. Regarding not having enough stomach acid, this is a known problem of aging. Most older people do not have enough. I tried HCL betaine and had a lot of stomach pain with it. If one's stomach is sensitive, I do not recommend supplementing with this. Also if one has ulcers, it is a very bad idea.

I take a Bromelain capsule when I'm having problems with protein digestion. I think cleaning up one's diet -- eating only whole foods and no processed foods -- and eating light meals with something raw for natural enzymes at each meal would be a good place to start. Also, indigestion and GERD are in most cases due to food intolerance, so identifying the foods you don't tolerate (keep a food diary) could go a long way toward helping.

I hope I don't sound like a know-it-all. I am still learning after all these years what works for me.
I spend a lot of time reading and I am doing better this year than I did last year, so I have more hope than I have had in a long time.

Some of us probably have a mitochondrial disease and need specific supplements for that. Others might have mastocytosis. Still others might have an infection that needs attention. I wonder if at the end of the day Fibromyalgia will turn out to be a collection of many different already known illnesses and the term "Fibromyalgia" itself will become obsolete as it will be considered a wastebasket diagnosis. Just wondering here.

I don't feel well after eating gluten products. I eat Ezekial bread which is sprouted bread and I eat brown rice pasta.

Ezekiel bread has gluten. I love it and wish I could eat it but it's a total no-go for the gluten free diet.
I am aware of Heather's web site for IBS. She developed an eating plan that helped her. Clearly there are different causes of gut dismotility or "IBS" -- not all are gluten-related. However, gluten-related issues are the most common and getting to be epidemic in our society. Perhaps GMO foods are responsible for the gut permeability, which leads to undigested proteins passing through the gut and crossing the blood/brain barrier, which leads to greater food allergies and intolerances.

Here is another connection regarding mast cell activation syndrome, which is now believed to be relatively common in the population and especially in some disorders like fibromyalgia and IBS. This is copied and pasted from: http://www.jhoonline.org/content/4/1/10

Abstract

Mast cell activation disease comprises disorders characterized by accumulation of genetically altered mast cells and/or abnormal release of these cells' mediators, affecting functions in potentially every organ system, often without causing abnormalities in routine laboratory or radiologic testing. In most cases of mast cell activation disease, diagnosis is possible by relatively non-invasive investigation. Effective therapy often consists simply of antihistamines and mast cell membrane-stabilising compounds supplemented with medications targeted at specific symptoms and complications. Mast cell activation disease is now appreciated to likely be considerably prevalent and thus should be considered routinely in the differential diagnosis of patients with chronic multisystem polymorbidity or patients in whom a definitively diagnosed major illness does not well account for the entirety of the patient's presentation.

Introduction

The term mast cell activation disease (MCAD) denotes a collection of disorders characterized by (1) accumulation of pathological mast cells in potentially any or all organs and tissues and/or (2) aberrant release of variable subsets of mast cell mediators. A classification has been proposed which differentiates several types and subclasses of MCAD (Table 1). The traditionally recognized subclass termed systemic mastocytosis (SM) includes disorders characterized by certain pathological immunohistochemical and mutational findings (the WHO criteria; Table 2; [1,2]) which are divided into several subtypes (Table 1). On the other hand, mast cell activation syndrome (MCAS) presents a complex clinical picture of multiple mast cell mediator-induced symptoms, failure to meet the WHO criteria for diagnosis of SM, and exclusion of relevant differential diagnoses [1,3-5]. Symptoms observed in patients with MCAS are little, if any, different from those seen in patients with SM [6-8]. Patients present variable and often fluctuating patterns of symptoms (Table 3; [9-15]) which depend on the tissue responses to mast cell mediators released both spontaneously and in response to trigger stimuli.

Mast cell activation disease in general has long been thought to be rare. However, although SM and MCL as defined by the WHO criteria are truly rare, recent findings suggest MCAS is a fairly common disorder. Evidence has been presented for a causal involvement of pathologically active mast cells not only in the pathogenesis of SM and MCAS but also in the etiology of idiopathic anaphylaxis [16-18], interstitial cystitis [19], some subsets of fibromyalgia [20,21] and some subsets of irritable bowel syndrome [22-24].

long with the gi discomfort, i also seem to have trouble digesting food, i go to the bathroom on a normal basis and stools usually soft and sometimes pasty. occasionaly the can be hard.

 

i sometimes think maybe its certain foods i eat but it seems no matter what i eat i have the same symptoms, even on an empty stomach i get bloated.

 

i also have a poor appettie and it takes longer to get hungry but i try to eat as normal as i can, just little bits at a time compared to how i used to eat.

 

it sucks not being able to enjoy a meal, when i get hungry i dont always i know i need to eat but it seem more like a chore at times then enjoyable.

 

I'm like JC and AB. (gi issues not skinnieness, lol) Been this way for couple years. Got worse after I had my gallbladder removed. Then stopped getting better inbetween "attacks" a year ago. Doc told me to eat white breads and pastas and lots n lots of crackers. They are easiest for stomach to break down. They say its my pancreas, but it includes motility and absorption.

But last night I started feeling pretty decent (have to move gently and NO lift or pushing)....So I didnt go to bed.....think it is that cortisol thing DW was saying. I still feel better than I do anytime after sleeping 6-10 hrs. NOt my mind, or my energy of course, but my abdomen and stomach and ruq are at bay. I have done more this morning since hubby left for work, than I have done in a month (on my own). I know that I will crash, but it will be worth it because I am able to accomplish things!