my stomach swells like im 9 months pregnant..anyone else?

[globalpilot]

It is $266 through directlabs. A little pricey but I think its more definite than the culture tests, which I have done before.

As an example, a list member on the curezone board was treating herself for candida for a while and not getting better. It turns out she had cryptosporidium and she beleives she picked it up from her travels. She had to tailor her treatment to the cryptosporidium and she got well.

How much does the metametrix test cost? If I can afford it, I think that would be useful for me too.

Lala you are right, living without dairy, gluten and fructose is very hard, though I did it for a year and a half!
I would first try the glocosamine supplements and see how much they can help you, but without giving up fructose as I don't think that would be necessary. Then you could do a gluten and milk free trial for about 2 weeks after that, just to see what happens.

 

[Lala]

How much does the metametrix test cost? If I can afford it, I think that would be useful for me too.

Lala you are right, living without dairy, gluten and fructose is very hard, though I did it for a year and a half!
I would first try the glocosamine supplements and see how much they can help you, but without giving up fructose as I don't think that would be necessary. Then you could do a gluten and milk free trial for about 2 weeks after that, just to see what happens.

I have already tried giving up diary as well but not together with gluten free diet. In any way it did nothing for me. I am just ordering glucosamin, so hope it can help to some degree.
Metametrix test through metametrix costs 210$, but they have more GI profiles, so you can check their website to select the right one for you. This one includes parasite testing which seems to me very important as common stool tests are useless. Good luck and let us know the results if you try it.

 

[SaraM]

I once was not able to eat food for three days and my muscle pain was totally gone. I have a large belly, burning, cramps, indigestion , ... My Genova stool test is almost perfect. I have high albumin which is a marker for Crohn's disease.Two years ago Doc wanted to do a scan and endoscopy, but I made a mistake and refused to do the tests. I was checking a Crohns disease forum and some people who were diagnosed with Fibro , actually had Crohn's disease. They had done sets of scans, Mri's, colonoscopies, endoscopies, but only a capsule endoscopy had helped them to get a diagnosis, because they had the inflammation in their small intestine. Some Crohn's cases had gone into remission with a liquid diet for a few months, some had been helped with more expensive digestive enzymes (someone mentioned garden of life brand). I am going to see my GP this week and he will probably order a scan. In case of a negative scan results, I will ask him for a capusle endoscopy.

 

[globalpilot]

I had high albumin 1 of the 2 times as well.

Do you have a link handy for that thread you were reading on the crohns forum ?

I once was not able to eat food for three days and my muscle pain was totally gone. I have a large belly, burning, cramps, indigestion , ... My Genova stool test is almost perfect. I have high albumin which is a marker for Crohn's disease.Two years ago Doc wanted to do a scan and endoscopy, but I made a mistake and refused to do the tests. I was checking a Crohns disease forum and some people who were diagnosed with Fibro , actually had Crohn's disease. They had done sets of scans, Mri's, colonoscopies, endoscopies, but only a capsule endoscopy had helped them to get a diagnosis, because they had the inflammation in their small intestine. Some Crohn's cases had gone into remission with a liquid diet for a few months, some had been helped with more expensive digestive enzymes (someone mentioned garden of life brand). I am going to see my GP this week and he will probably order a scan. In case of a negative scan results, I will ask him for a capusle endoscopy.

 

[globalpilot]

LaurieL, What test found the e coli and klebsiella ?

I went through all the treatments mentioned here, candida, parasites, intestinal cleansing, heavy metal chelation, detox, H. pylori, varied diets including raw, gluten free, physillium, and many others,...etc. etc. Although I experienced slight improvements, only after testing, did it become apparent to me or my docs, that it was none of the above.

The only reason I am replying to this, is because my stomach also expanded in quite the similar manner as described here. I was diagnosed with klebsiella and e coli. Please, don't discount the bacterial infections. They just don't test regularly like they should for these, and many times, they outright miss it. It took 7 long years for this diagnosis.

My cultures were also tested by antibiograms, and it would seem there was only one it was sensitive to. After starting targeted treatment, I dropped 19 pounds in 13 days and my bowels normalized. Finally.

Lauriel

 

[SaraM]

Here is the link to the forum :

http://www.crohnsforum.com/

I got the info by reading different threads.

 

[Hibernia]

There is an important issue that has been totally overlooked - intestinal malrotation/malattachment, including redundant colon. A malrotation of the gut is a congenital issue where the intestine ( during the early 4-6 weeks of embryo development) does not make the full 270 degree counterclockwise rotation. Then,when the intestines attach to the abdominal wall there is an imbalance of the entire gut. Redundant ( long, loopy) colons may be a part of this issue. This is estimated to occur at least 1 in 500 births. As well, the cecum ( on the right side) may not attach, causing a hypermobility in this area. This has been estimated at 10 to 20% of the population. NOT RARE. The problem with redundant, loopy colons is that there may be twists and kinks that can develop. As well, internal hernias can occur. Sometimes the small bowel can be involved. There can be lack of good blood flow in certain areas of the small/large intestines. What happens when a hose has a kink in it ? Abnormal pressures on the hose wall, back flow of fluid, water squirts out from the hose connection if it is not tight. So, can you imagine the problems in the gut ? I suspect that hiatal hernia is related and reflux/ poor emptying of the stomach - and vomiting. The gut flora can never balance as long as there are pockets of poor colonic movement and lack of blood flow. Recurrent vomiting is a SERIOUS problem and should always be investigated.

These conditions ( except redundant colon)I have mentioned are almost impossible to diagnose unless the intestine goes into a full "twist" and people are deathly ill - ie a "volvulus." We have had 4 surgeries for volvulus in our group. I am dx with the redundant sigmoid/transverse colon/rectocele/enterocele, borderline cystocele, and have been offered surgery by a colorectal surgeon. Yes, I blow up like a balloon, and have pain on the left side. ( no diverticulitis) The gastrointestinal docs did not have a clue. Have I had surgery yet ? No, but I can't say that I won't. I've had these tests : anorectal physiology, Sitzmark, defecogram, plain x-rays, abd. CT scan with contrast, small bowel followthrough. I did not have a 'classic' malrotation, but I have plenty of other issues, and maybe some that will only show on laproscopic investigation.

 

[Athene]

There is an important issue that has been totally overlooked - intestinal malrotation/malattachment, including redundant colon. A malrotation of the gut is a congenital issue where the intestine ( during the early 4-6 weeks of embryo development) does not make the full 270 degree counterclockwise rotation. Then,when the intestines attach to the abdominal wall there is an imbalance of the entire gut. Redundant ( long, loopy) colons may be a part of this issue. This is estimated to occur at least 1 in 500 births. As well, the cecum ( on the right side) may not attach, causing a hypermobility in this area. This has been estimated at 10 to 20% of the population. NOT RARE. The problem with redundant, loopy colons is that there may be twists and kinks that can develop. As well, internal hernias can occur. Sometimes the small bowel can be involved. There can be lack of good blood flow in certain areas of the small/large intestines. What happens when a hose has a kink in it ? Abnormal pressures on the hose wall, back flow of fluid, water squirts out from the hose connection if it is not tight. So, can you imagine the problems in the gut ? I suspect that hiatal hernia is related and reflux/ poor emptying of the stomach - and vomiting. The gut flora can never balance as long as there are pockets of poor colonic movement and lack of blood flow. Recurrent vomiting is a SERIOUS problem and should always be investigated.

These conditions ( except redundant colon)I have mentioned are almost impossible to diagnose unless the intestine goes into a full "twist" and people are deathly ill - ie a "volvulus." We have had 4 surgeries for volvulus in our group. I am dx with the redundant sigmoid/transverse colon/rectocele/enterocele, borderline cystocele, and have been offered surgery by a colorectal surgeon. Yes, I blow up like a balloon, and have pain on the left side. ( no diverticulitis) The gastrointestinal docs did not have a clue. Have I had surgery yet ? No, but I can't say that I won't. I've had these tests : anorectal physiology, Sitzmark, defecogram, plain x-rays, abd. CT scan with contrast, small bowel followthrough. I did not have a 'classic' malrotation, but I have plenty of other issues, and maybe some that will only show on laproscopic investigation.

This is extremely interesting.
I am so glad you wrote this post.
I have redundant colon (I've had seven colonoscopies and they all said it is 50% longer than a normal colon) and they also commented it is incredibly mobile, hardly fixed on anywhere! My transverse colon hangs down in the middle so it forms two arches like the logo of MacDonalds, and then at the end it has an S-bend!
However, all these doctors have insisted that this condition is harmless, causes no symptoms whatsoever, could not possibly cause me any pain or other disturbaces etc. I always had some niggling doubt, since they then went on to admit they had no idea why my guts were causing so many problems.
Do you know of any good websites where I could read up more about this generally?

 

[Hibernia]

Athene, Ah ha ! Redundant colon ! I am not surprised. Motility is an important issue in these cases. The Sitzmark test helps look at that. It is a very easy test. You swallow a capsule of (24 ?)little rings, then get a plain x-ray each of about 5 days to track the progress of the rings. Where are they getting 'stuck?' How serious is the motility? These plain x-rays deliver much less radiation than CT scan, so this is a good thing. I do not know of a good website. Even the International
GastroIntestinal Functional Disorders site does NOT cover this. ( I wrote and complained.) However, try searching for
redundant colon surgery and read at the various forums where patients are discussing this. I spoke ( via phone) with one such patient in the Palm Springs area ( CA). She had suffered terribly - with pain and severe fatigue. Finally she
had surgery ( removed most of her colon : ( ) and is doing great. Fatigue - gone. Back to her singing career. Also, she had been on thyroid meds for years. After surgery, the thyroid corrected itself, and she if off thyroid meds.
The 'double whammy' in this redundant colon thing may occur when the nerve control to the bowel is compromised by sacral/pelvic instability and/or neck trauma. Then, the nerve impulses are weakened and can not compensate for this long, loopy colon.

It is also appreciated that malrotations of the gut/altered blood flow can cause immunological problems - ie a weakened immune system. Here is the reference: Fawcett et al. Immunodeficiency secondary to structural intestinal defects. Malrotation of the small bowel and cavernous hemangioma of the jejunum. Archives of Pediatrics&Adolescent Medicine 1986 Feb 140 (2):169. The immune system of these kids normalized after corrective gut surgery. It seems that if the structural problems with the gut are not identified in people who have been very sick babies, then gut structural problems are never found, or even considered.

I have a theory that malrotations of the gut either cause or contribute to scoliosis. I have mild scoliosis, but scoliosis and gut problems are through out my maternal line. My daughter was constipated as a breast fed infant. No one could figure this out ! Thankfully, she grew out of this - mostly. I actually wrote to the online journal, Scoliosis, about all of this. This online journal is for the international research group on scoliosis - top people around the world. Well, I was just notified that my comments have been reviewed and published on line. ( I nearly fainted.)

So, Athene, considered this entire scenario I believe that these gut structural problems may in fact be the cause of the chronic fatigue/immune problems that so many of us experience. It is appreciated that the gut bacterial 'toxins' and bacteria themselves can leak across the gut wall. Finally, my infectious disease doc, my acupuncturist ( !!), and my colorectal surgeon all agree that this is the probable cause of these awful low grade "swinging" fevers that I have, and also the elevated cytokines/immune factors - my tumor necrosis factor alpha has been up.

Hope this helps you and others. The problem is, "What do we do about this???" I feel certain that the wonderful researchers can figure this out once they determine that redundant colon ( with malrotation? with internal hernia? etc) is a PROBLEM worth considering.

 

[Athene]

Hibernia, you are a goldmine of info and thank you again for all this.
I'm going to digest (ho ho) all this and then come back with more questions, if that's OK!

 

[Hibernia]

Thank you, Athene. Your words are kind. I have learned much of this 'the hard way.' Please read, read, read. I will be away from my computer for a few weeks, but happy to answer anything I can.

 

[globalpilot]

Hibernia - this is extremely interesting and thought provokiing. You mention these conditions (except redundant colon) are almost impossible to detect. So how would one start an investigation ?

 

[Hibernia]

Please note the tests I mentioned earlier - especially the Sitzmark. It really is essential to be with a doctor and radiologist who is an expert at these complex bowel diagnoses. There is a surgeon, Dr. Garth Ballantyne, who has written much and seems to understand the complexities. It is my understanding that a small bowel followthrough is diagnostic for a true malrotation of the small bowel/gut. I had to go to a major medical center to get this done. I drank a barium-type mixture then got an x-ray in certain positions over a period of an hour. My test was negative, however. Sometimes a CT scan with barium drink can be diagnostic, but I remembering that about 25-30% of the cases ( ie true, complete volvulus) are missed. The problem is that if the bowel/small intestine are even partially open, the typical radiological signs are not visible and diagnosis may not made. On several studies the radiologist noted for me "nonspecific bowel gas pattern." Read about this one. Geez. There is a huge controversy about what is normal and what is not. Some docs say this kind of statement should never be made as some doctors take it to mean normal, and others take it to mean abnormal.

From everything I have read a laparoscopic investigation may be the only way to find some of these odd things - like internal hernias, abnormal bands of tissue, and such. I spoke with one woman who had bowel problems all her life. She had a laparoscopic investigation as part of a fertility work up. The surgeon told her that all looked fine except that he found an abnormal band of tissue attaching one ovary to part of the large intestine. He dissected this tissue - since it was abnormal. She told me that after this she had no more pain or GI problems ! No more constipation !

So, diagnosis is the big problem. The only thing that ( finally) happened to me that got the surgeons' attention was a large, 5 cm rectal ulcer - seen on colonoscopy and biopsied. If I hadn't gotten this ulcer I would still be diagnosed as
"irritable bowel." The biopsy resulted in the diagnosis of "solitary rectal ulcer syndrome." He also biopsied the descending colon and found that the bowel tissue was swollen, and the pathologist, mentioned " ischemia" - ie lack of blood flow to that part of the colon. Some one mentioned diverticulitis as I had an ER visit with fever of 101 and severe left-sided pain. Also, a blood count showed a high white count. However a recent second colonoscopy said "no diverticulitis." I have been offered a "sigmoidectomy," but honestly I still think there is some undiagnosed problem with the descending colon - like a twist or a kink. I am going to ask for a laparoscopic evaluation first ( before any kind of sigmoidectomy !!) but there is some question whether any surgeon would do this or whether insurance would cover.

I tell you all of this because I wanted to illustrate how complex these problems are, and how radiologists and surgeons may not even agree. There are often no clear diagnostic markers. And the only advice I can give is to read about the conditions I mention ( redundant colon, malrotation, hypermobile cecum, internal hernia) and find an experienced colorectal surgeon who is willing to investigate. If you are very symptomatic and very sick with these bowel problems, and you feel as if you may have a partial blockage, then it is certainly worth the effort. I wish I could be more helpful.
I leave tomorrow for vacation, but back in July. Big hugs.

 

[Lala]

Hm, I was also diagnosed with redundant colon and my colon had Mac Donald shape like Athene described. I had suffered from horrible constipation almost since my birth and I had tried everything on earth to cure this with no success. When I was twenty I had appendectomy and the surgeon told me my colon was too long, so I will suffer from this condition all my life.
When I was thirty I took round of antibiotics for several weeks for another health problem and during this course I felt lots of pain in my colon and felt lots of strange movements. During this time my constipation miracuously dissapeared and has never returned. It has been 7 years now. So I am very reluctant to believe such diagnosis. How do they measure proper lenght of colon? Do they judge from findings at necroscopies or how?
I think if we have infected large nerve centre in our stomach it can cause all kind of problems with gut and colon.Our colon is full of nerves and if they do not work properly we can have tension, stenosis, changes in shape, whatever you want.

 

[Athene]

Have a fantastic holiday Hibernia. Iì'm off too next week, but let's resume this chat once we're back, OK? Meantime I'll continue my reading marathon!

 

[Athene]

Hm, I was also diagnosed with redundant colon and my colon had Mac Donald shape like Athene described. I had suffered from horrible constipation almost since my birth and I had tried everything on earth to cure this with no success. When I was twenty I had appendectomy and the surgeon told me my colon was too long, so I will suffer from this condition all my life.
When I was thirty I took round of antibiotics for several weeks for another health problem and during this course I felt lots of pain in my colon and felt lots of strange movements. During this time my constipation miracuously dissapeared and has never returned. It has been 7 years now. So I am very reluctant to believe such diagnosis. How do they measure proper lenght of colon? Do they judge from findings at necroscopies or how?
I think if we have infected large nerve centre in our stomach it can cause all kind of problems with gut and colon.Our colon is full of nerves and if they do not work properly we can have tension, stenosis, changes in shape, whatever you want.

My redundant colon was diagnosed in a colonoscopy.

The standard tube thingy that they stick up you for a colonoscopy (sorry can't remember the word right now) is 3 metres long (9 feet). A normal adult colon is about 6 feet long (2 metres). After my 7 colonoscopies they have always said - with rather amazed faces - that my colon is over 9 feet long so they could not make it all the way to the ileo-cecal valve.

KDM said that the vast majority of CFS patients have pain and leakage of the ileo-cecal valve. That is supposed to be a one-way valve that stops fecal matter in the large intestine going backwards into the small intestine and carrying bacteria with it. There are supposed to be very few bacteria in the small intestine. When your immune system works properly it does nearly all its work there - 80 percent to 90 percent of the active immune cells in a human are all working on the intestine to maintain the right balance of bacteria and other residents there.

For my last colonoscopy I told them my intestine is very long and I really needed them to check the ileo-cecal valve so they used an extra long cable thing. This time it was Sicilians not English doctors, so they were far more talkative!
(Sorry this is so gross, it always makes me think of that episode of Southpark where Cartman is abducted by aliens and given an anal probe. If you're sqeamish, STOP reading now). They told me this time that it had been incredibly difficult to get the thing up me because my intestine is not only ridiculously long but also amazingly mobile. They said to maneuver it round the corners they had one doctor "literally putting his hands on my abdomen to manipulate the hose to the right angle inside" me while the other one "shoved from behind".

After my pregnancy I had ludicrously slack abdominal muscles and when I got gas, I could literally lie on my back and see my intestine writhing about inside me like a live serpent. It would arch over making a bulge in my abdomen, then slip down the opposite side of my tummy. I asked my husband to watch this as I thought I was hallucinating!
At that time I felt a lot better wearing a very tight corset that went from hip level to just under my bust. (You have to wear those after a cesarian as your abdominal muscles don't work and it feels as if your entrails are about to spill on the floor when you stand up). I find tight waistbands unbearably painful but this applied even pressure and to my surprise, made my tummy feel and function a lot better.

Reflecting on what Hiberia has said, I think that using this to keep my intestine pretty much strapped down in place prevented me from getting constant little twists and blockages in the intestine. I've started paying attention to my posture since Hibernia said slouching can cause gut problems and even thyroid problems (I do have a hypothyroid condition). I am a terrible sloucher and it only gets worse wehen my CFS is bad and all my muscles are tired. Today I made a huge effort to stand up well and my guts were far less bloated than normal. Thn I betn over to tidy up my son's bedroom floor that was strewn with toys, and hey presto! I look pregnant as usual.
I've decided to try wearing a kind of truss for a while, strapping it all in, and seeing how it behaves.

This article says redundant colon can result from long term constipation, as this elongates the longitudinal muscles. This relates to slow intestinal transit.
http://jp.physoc.org/content/588/18/3343.full

In my case I think the long colon must be congenital as I have had a lifetime of atrocious diarrhoea.

When I first startd antibiotics for lyme I got such spectacular pain in my gut that I was unable to stand fully upright for over a week. Dr N at the BCA was very worried as I seemed to be having a monster herx but he was worried I might be having some other problem as he had never seen a patient with such terrible tummy problems.
Strangely enough, since my 18 months of antibiotics I have diarrhoea no more, and now I am prone to getting constipated instead. This could either be because antibiotics and high-potency probiotics have made major changes in my intestine flora. Or it could be that the antibiotics have specifically killed off lots of lyme bacteria (or bartonella which also loves to ruin people's guts), which I have just learned causes a wide range or neurological problems in the intestine.

There's a very good article here describing lyme-related intestinal paralysis and other neurological abnormality called "Bell's palsy of the gut."
http://www.ilads.org/lyme_research/lyme_publications14.html

So anyway, that's all the long way of saying, I definitely have neurologial issues, but I know for sure the elongated and hyper mobile colon is also part of my situation.

 

[newradost]

Do you react to histamine in foods? I have been reacting all my life, but nowadays I became suspicioius because of my child food allergies and also make tests - Both of us are so deficient in DAO enzyme and too high in histamine (as we ate row tuna fish). So the symptoms are swelling, pain, CFS - you can read on the internet

 

[Athene]

Hi newradost,
Yes, I react to histamine in foods, but I also have my own allergic reactions to quite a lot of foods, and these seem to be worse than the general reaction to existing histamine.
I have a chronic high count of eosinophils (it's called hypereosinophilia) and raised basophils too. I feel as if I am packed with these "allergy cells" which are just waiting for any excuse to start degranulating!!!

 

[newradost]

Yes, my child is the same. I was considering mast cell activation disorder, but it seems like dead end. Histamine marks inflammation in gut .... My child and I have low DAO enzyme and experience terrible histamine head and stomach ache and fog. Histamine free diet helps a lot.

 

[nanonug]

I was considering mast cell activation disorder, but it seems like dead end.

Have you done any testing for intestinal permeability? Leaky gut could be the culprit: LEAKY GUT SYNDROMES: BREAKING THE VICIOUS CYCLE.