Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
Discuss the article on the Forums.

Gastrointestinal symptoms and Gastritis among CFS patients

Discussion in 'General ME/CFS Discussion' started by dirk086, Aug 1, 2017.

  1. dirk086

    dirk086

    Messages:
    13
    Likes:
    17
    Hello everyone,

    I would like to know which ones among us have got gastrointestinal symptoms and if so, which ones?

    Furthermore I'd like to ask which one of you had endoscopy and again, if so, what were your results?

    The reason I ask is because:

    Dr Chia as well as Dr. Kenny De Meirleir found that a high percentage of CFS patients (with gastrointestinal symptoms) seem to have (atrophic) gastritis without H pylori being the cause.

    Here are the links:
    http://www.foodsmatter.com/me_and_c...rticles/cfs-chronic-gut-infections-08-12.html
    http://www.scirp.org/journal/PaperInformation.aspx?paperID=55465

    I myself have chronic gastritis which, many years ago, started with mild erythema and is now atrophic without any known cause. I also got a very low grade inflammation in my duodenum and parts of my large intestine.

    I can't tolerate any dairy products, fructose and also have a problem with other sugars.

    I'm curious about how many of us share the same/similar symptoms.
     
    Last edited: Aug 1, 2017
    Fogbuster, MEMum, merylg and 3 others like this.
  2. drob31

    drob31 Senior Member

    Messages:
    1,244
    Likes:
    725
    Those are very interesting. I had always had umbilicus infections, and the article says that's a sign of imbalanced intestinal flora.

    Furthermore my issues with "fatigue" began when my stomach started bothering me, although I don't seem to have any stomach issues now, but who knows.
     
  3. Marco

    Marco Grrrrrrr!

    Messages:
    2,379
    Likes:
    3,175
    Near Cognac, France
    Gastro symptoms (initially constipation then the runs) from the start.

    Had endoscopy/barium enema etc and they found 'fat malabsorption'. Tested for the three known causes of this and found nothing.

    Report back to my GP - No issues.
     
    MEMum likes this.
  4. dirk086

    dirk086

    Messages:
    13
    Likes:
    17
    I am also now reading a lot on imbalanced flora and it is actually what I hope might be the right direction towards remission for a lot of people (got very inspired by reading http://www.cfsremission.com and some other sources - maybe some people here already know [about] him).

    @drob31: When you're saying you don't have any issues now do you mean pain? Because my "stomach" pain subsided after 1 round of antibiotics (which I suppose was because it helped clearing up the overload of bacteria in my stomach and small intestine because of my inability to produce stomach acid), but the inflammation is still there.

    So what I mean by that is, the pain might be gone but the inflammation could still be there, like it is the case with me.
     
    ljimbo423 likes this.
  5. erin

    erin Senior Member

    Messages:
    749
    Likes:
    2,103
    I have every symptom and the diagnosis that you have.
     
  6. wonderoushope

    wonderoushope Senior Member

    Messages:
    126
    Likes:
    172
    I get recurring gastritis. In fact, up until 3 months ago I was suspecting I had it again and my health declined. So I went of the RPAH diet with a trained dietitian. I have been on it almost 3 months and I haven't had many symptoms since on it (hardly any reflux, no cramps, not getting overly full quickly, no upper stomach bloating/tightness and pain and nausea only appears with certain foods).

    I have challenged, wheat, lactose free milk, amines and just doing modified salicylates (no tea, coffee, honey or cinnamon, as I suspect I have issues with these already and will test later, plus tea and coffee not great for fatigue). I do get issues with these groups (apart from lactose free milk) but not too much gastrointestinal problems (instead I get more like, fatigue, frequent peeing, mood issues, itching). I will do wheat again, as I didn't do it properly, but I suspect gastro issues with wheat.

    I have started to see a pattern though if I consume high FODMAP foods, then I do start to gastrointestinal issues. It's hard to do the diet as it's rather restrictive and there a quite a few vegetables that are high fodmap on the diet.

    I don't know if it just I am getting a bit better at the moment from the diet, or specific chemicals in foods effect me, but aches and pains have reduced at the moment as well.

    It's looking like salicylates may bring on insomnia for me.
     
    Last edited: Aug 1, 2017
    MEMum likes this.
  7. kelly8

    kelly8

    Messages:
    74
    Likes:
    126
    I've got a ton of gastro issues unfortunately. Never had a biopsy done though as the Drs seem quick to dismiss everything as ibs. Constipation altering with diahrea. Leaky gut. Constant stomach pains that travel. Food intolerances up the wahzoo. Yuck.
     
  8. Sean

    Sean Senior Member

    Messages:
    3,257
    Likes:
    17,985
    I get serious gastritis/reflux to the point of crippling. :aghhh::aghhh::aghhh:

    Only thing that has worked for me is PPIs (proton pump inhibitors), in my case Omeprazole. But it works brilliantly, kills it stone cold dead. Which is nice. :)

    No doubt tomorrow there will be a report that it causes some cancer or other and takes ten years off your life. But rather that than live with the horrible pain. It really is that bad.

    What, if any, connection it has to ME/CFS, I know not.
     
    MEMum likes this.
  9. pattismith

    pattismith Senior Member

    Messages:
    643
    Likes:
    900
    I can't take anti-inflammatories drug because of stomach pain.
    Last time I did another try on it, I had my Helicobacter Pilori IgA that raised...
     
    MEMum likes this.
  10. Jill

    Jill Senior Member

    Messages:
    207
    Likes:
    708
    Auckland, NZ
    Yep got terrible gastritis when I first got sick and it is recurrent and doesn't resolve with ppi or antacids. Originally thought hiatus hernia but no. Have terrible ibs - d . Had colonoscopy this year after atleast 30 years of it all and the only comment was ' challenging colonoscopy as has tortuous bowel '. They couldn't sedate me in any way. It was absolute agony . As I left the gastro he said ' you might like to try the fodmap diet '. It was hard to think he was being serious . Thing is I've done the ketogenic diet now for 3 weeks and feel a tonne better. My brain is great . The reasons why it helps could be numerous - 1. Ketones fueling instead of sugars 2. Smaller meals helping pots. 3 . It cuts out way more starches than low fodmap, but it could be helping as it's an extreme version of low fodmap but requires more salt ( pots again ?) and a lot of fat . In 6 weeks I'll introduce other foods.
    This is the first diet that has ever helped me symptom wise - gastric, brain and energy . Ok it's difficult to do but I'm never hungry . I've been sick for 30 years and have always said to my gp that I felt like my gut was fermenting but zero advice . Found out about keto whilst watching Michael Mosley and moving on to ' low carb down under ' on utube .

    Ps I couldn't read the whole article but assume something to do with fodmap diet as poster before me alluded to it . Can someone perhaps summarise the research ?
    Thanks
     
    MEMum, pattismith and ryan31337 like this.
  11. ryan31337

    ryan31337 Senior Member

    Messages:
    447
    Likes:
    992
    South East, England
    Hi @Jill,

    Great news on the diet, it helped me hugely too. If you have POTS/dysautonomia one line of thinking is that the high fat content could be slowing rapid gastric emptying (aka dumping syndrome). For me this would manifest itself as needing the loo 10-20mins after eating every meal on bad days, amongst other symptoms. Can imagine this being chalked up to 'IBS' by some.

    Some more info here:
    http://www.potsuk.org/UserFiles/File/Prof_Q_Aziz_Gut_and_PoTS.pdf

    Ryan
     
    sb4 and pattismith like this.
  12. Jill

    Jill Senior Member

    Messages:
    207
    Likes:
    708
    Auckland, NZ
    Yes I am realising that I must have POTS or dysautonomia of some sort. Also have been diagnosed recently with EDS (h). Thanks for that link.

    Like you i'd get the dumping syndrome after esp dinner. Id never know when it was going to happen. Its been a nightmare to live with.

    I CAN NOT believe how much ketosis helps. I was walking round today thinking if everyone feels like this then they have no excuse to be sloths. I almost feel like I'm on a high (like runners talk about). Its WONDERFUL.
    Once i got the fridge filled with the right food I've found the diet easy to do. Am eating less food but better food. So I don't think its any more expensive. I don't get the PEM as long as I remember to take salt and magnesium. - they are sooooo important . I carry round an oxo cube thing to have in hot water. As soon as my calves start to ache ( I
    remember getting this symptom as a kid interestingly) I up the salt.

    Yeah been told I have IBS too. At the mo I'm trying to find my magnesium needed because I'm kinda suffering constipation. I also throw a salty drink as soon as I wake up . I can't believe how much salt I can take without BP going up. Well actually it has gone up but was low to start with and dr said that was a good thing.

    Ketosis reduces leptin and this maybe another reason it helps.

    I wake feeling good and am having full days. I don't work and am not sure if I could. I'm just happy to feel better even if I have to be anti social with food - who cares.
     
  13. belize44

    belize44 Senior Member

    Messages:
    923
    Likes:
    2,172
    Pennsylvania
    It's good to read about people benefiting from ketosis. I am still struggling with this, in terms of increased body pain and poor sleep. The first week was great and I thought it would stay that way, because my brain fog cleared and my sleep improved. But then I started keto flu. Now I find a great day here and there in among many bad days. I do have trouble lowering carbs because I actually feel better if I have a more generous serving of low carb fruits or veggies, or if I consume Ezekial bread or air popped corn. I think my body is having trouble dealing with clearing toxins, TBH. My PT suggested Chlorella so I have added that to my arsenal of supplements.

    On the bright side, IBS symptoms are improving drastically!:thumbsup:
     
    MEMum likes this.
  14. Basilico

    Basilico Florida

    Messages:
    827
    Likes:
    1,974
    There are lots and lots of threads about various GI problems here, it is a fairly common comorbidity with CFS. You might want to create a poll to make information collection a little easier!

    My husband and I both have a history of GI problems (for him -> IBS-D, for me ->IBS-C) but we've made major improvements with pretty aggressive probiotic treatments. I also made a lot of improvements after I drastically reduced insoluble fiber in place of more soluble fiber.
     
    MEMum likes this.
  15. Sabrina90

    Sabrina90

    Messages:
    9
    Likes:
    27
    I suffer terribly with gastro problems. I had a diagnosis of IBS a good couple of years before I got cfs. I have had an endoscopy and sigmoidoscopy but always results come back clear. Meberverine 20 minutes before each meal helps a bit. The need to "go" after dinner isn't quite so urgent. Suffering at the moment because GOP loves putting me on codeine for pain and it gives me terrible constipation. When I eat it feels like I've been poisoned and need to expel it as quickly as possible. But when you're constipated you can't get rid of it and it hurts like hell.
     
  16. pattismith

    pattismith Senior Member

    Messages:
    643
    Likes:
    900
    hi Ryan, very interesting!

    I wonder if I may have early dumping syndrome, because I am so bad after eating!

    I tryed several diets, but didn't found any difference. What made difference was the food volume intake (the more I eat, the worst I feel), and lying supine after a meal worsen very much my feeling.

    I monitored my L-Lactates before/after eating and noticed a peak above 2 mmol/l 1 hour after eating.
    This peak is higher if I lay supine immediatly after eating.

    My hypothesis was that I had an abdominal vascular compression when the stomach is full of food (at less two of the known vascular abdominal compression syndroms worsen when lying supine and most of them worsen after food intake) that could explain both the bad feeling and lactatemia peak....(by local abdominal hypoxia)
    But it could be that my stomach has an early emptying, which may be associated with a bacterial overgrowth in my small intestine. These bacteria may produce the L-lactate peak that I find in my blood...

    I have this problem since young, and it may be that both problems can coexist...
    But the interesting thing is that I came to the conclusion that I may take advantage by

    -stand or walk after eating (this favors general blood circulation)
    -eating frequent small food intakes
    -never drink and eat at the same time (wait 1 hour for food after drinking, and two hours to drink after eating)
    -eating slow and shewing a lot

    I tryed all this and it really works for me!The hardest think is to keep standing (and walking when possible) after eating, because the only think I really want after eating is lying and sleeping, but I am much more better and recover much more easily from food intake if I keep standing!

    What is recommanded in the link you gave to fight dumping is very similar:

    -Eat small and frequent meals
    -Eat slowly and chew food thoroughly
    -Opt for low-glycemic-index foods
    -Increase fat and protein intake to balance energy requirements
    -Separate intake of liquids from solids, avoiding liquids for half an hour
    before and after meals.
    -Lie down for 30 minutes after meals - this can reduce postprandial
    symptoms e.g. palpitations, flushing or dizziness
    -Increasing intake of salt and water appears to improve symptoms of nausea

    The major difference with what i does is that they recommand lying after food intake..
    Be carefull, this may not be a good idea for any of us!

    in fact human specie is a walking specie, and walking is a cure for many of our problems.
    Walking after eating may be the best cure in many case (for those that can walk).
    it doesn't mean quick walk, on the contrary it means very slow walk, in french we call that "promenade digestive":)
     
    Last edited: Aug 6, 2017
    ryan31337, MEMum and Thinktank like this.
  17. Thinktank

    Thinktank Senior Member

    Messages:
    1,239
    Likes:
    1,396
    Europe + Asia
    I can talk for hours about my gastrointestinal problems, but to keep it short;

    - Crohn's disease (inflammatory bowel disease) in the small and large intestine. Especially the ileum has been affected.
    - Dysbiosis. My gut flora has been severely affected by 3 years of IV and oral antibiotics for misdiagnosed lyme disease. I'm now trying to get my gutbiome back in order by getting the Crohn's into remission and then following up with a course of faecal transplants.
    - IBS, and probably SIBO.
    - Allergic entritis, i get allergic reactions IN my intestines from certain foods. It's not only histamine being released but the whole scale of proinflammatory substances excreted by the mast cells. I react very strongly to certain vegetables.
    - Leaky gut (proven with lactulose test, CD14 LPS, IgG/IgA against specific bacteria that usually only exist in the intestine, many IgG food intolerances. Increased endotoxins from intestinal bacteria, increased D-lactate. The leaky gut causes bodywide inflammation and is probably caused by the Crohn's disease and worsened by antibiotics.

    I also suffered with gastritis for many years but thankfully that has healed. Gluten, Coffee, chocolate, tea, soda's and very acidic foods cause my gastritis to flare.
     
    Last edited: Aug 6, 2017
    perrier, wonderoushope, MEMum and 2 others like this.
  18. AliMac64

    AliMac64

    Messages:
    7
    Likes:
    4
    Hello, I’m just trying to learn how to manage myself and take some action to help reduce any symptoms and am looking round the blogs for managing symptoms but just wanted to ask, what is ketosis and this Keto diet mentioned and does anyone have a good link to something I could read about this?
     
  19. Learner1

    Learner1 Professional Patient

    Messages:
    1,100
    Likes:
    1,792
    Pacific Northwest
    A ketogenic diet is a low carbohydrate, moderate protein, high fat diet originally developed for children with epilepsy to control seizures.

    This link gives a little of the history and describes variations of the diet. Its aimed at families if children with epilepsy so its very conservative suggesting the diet be started in this hospital, which is not really necessary.

    https://www.charliefoundation.org/explore-ketogenic-diet/explore-1/introducing-the-diet

    This link is by a doctor and explains ketosis. He's an interesting guy and experimented on himself with ketosis. His blog posts are interesting, but patients like us are a little different, so if you read them, take his experience with a grain of salt...

    http://eatingacademy.com/nutrition/ketosis-advantaged-or-misunderstood-state-part-i

    For patients with ME/CFS, the rationale is that many of us have trouble converting carbohydrates into energy in the Krebs cycle. This is the pyruvate dehydrogenase you may read about that researchers have found.

    So, if we don't use carbohydrates well, that leaves fat and protein.

    Food on the diet consists of lots of non starchy vegetables, eggs, nuts, seeds, full fat dairy, meat/fish, and healthy fats. Organic is best, particularly with animal products as toxins concentrate in the fat.
     
    ScottTriGuy and ryan31337 like this.
  20. andyguitar

    andyguitar Senior Member

    Messages:
    162
    Likes:
    236
    South east England
    In the time I spent as a care giver(paid) gastritis was one of the most common problems that came up amongst the other sufferers i met. If you can sort it out it will make a substantial difference to you general health. I should say that about 80% of sufferers i met were female so maybe gastritis is more common among women in general. Even if you dont have any obvious gastric problems you need to look after your gut if you have ME.
     

See more popular forum discussions.

Share This Page