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Can You Come for a Visit? My ME/CFS Says No
My daughter and son-in-law just had a baby last week. We are thrilled. But we won't be able to see the baby or hold her any time soon. We won't be able to take over little gifts or help out with housework or babysitting.
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Everything i try makes my gut worse. Pleae help.

Discussion in 'Gastrointestinal and Urinary' started by justy, Dec 10, 2013.

  1. justy

    justy Senior Member

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    Hi, ongoing gut problems still. Had over a year of very bad gastritis and 16 months of PPI - been totally weaned off that for about 6 months now.

    Had ongoing IBS type symptoms for years, but no official diagnosis of IBS. Gastritis now ok stomach pain not high up any longer.

    Symptoms: left abdominal pain - medium and extreme lower left abdomen. Grumbling noises waking me at night, exteme trapped wind, worse at night than day. Tendency towards constipation, but able to go every day. Incomplete evacuation - mornings a nightmare afraid to go out as I have to keep going two or three times up until mid day.

    Dr Myhill says I have upper fermenting gut (is that the same as SIBO) she has diagnosed based on Genova diagnostics digestive panel - which didn't show up anything particularly remarkable. and symptoms.


    She prescribed metronizadole 200mg once a day working up to 3 times a day over about 6 weeks and then going down to once or twice a week, plus paleo diet strictly no carbs and betaine HCL with meals.

    I have discussed this elsewhere, but as I am very sensitive to all changes and most things I have tried make me worse I thought I would try very slowly (and I am going to spain for a month on Friday and don't want to get worse)

    I started with diet (again!) I am a vegetarian and I DO NOT eat meant apart from fish. The paleo diet with small amount fo carb as evening meal screwed my stomach up so bad after one week that I had to stop. Am scared of the antibiotics as im sure it was 14 courses of antibiotics over 12 months (2008/2009) that set my stomach off again.

    I gre some kefir on soya (not allowed dairy on diet) but this also made stomach worse.

    Gave up on everything again, stopped all supps and diets, stomach gradually improved to my normal.

    Tried juicing after watching fantastic documentary - Fat sick and nearly dead (worth a watch free online) Didn't want to do only juicing as not really well enough so tried replacing just breakfast with juice. This has now also screwed my stomach up - terrible pain and wind. Pain is very bad right down low on left side in from hip. Have had a scan to rule out kidney stones and ovarian etc problems. Scan ok.

    Now I don't know where to begin or what to do. Everyhting I try seems to make it worse. The only thing that has helped about 4 years ago was anti candida diet (had it systemically in oesophageous etc) and this calmed things down a bit, however I believe the high doses of caprylic acid and vit c (ascorbic acid) I was taking may have caused the subsequent gastritis.

    Any suggestions or advice needs to be simple, gentle, and vegetarian (I eat fish) I cannot do wahls, bone broth etc. What simple things can I slowly do that will help?

    All the best, Justy.
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  2. caledonia

    caledonia

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    Couple of thoughts - first, don't change anything before or maybe even during your trip to Spain. You don't want to mess up your trip by experimenting and having a bad reaction.

    Second, since your Spanish food may be somewhat different, if things improve, you may stumble onto something helpful. So try to pay attention to what you're doing different if that happens.

    Since you're constipated, you can try taking magnesium to get things moving. The more you take, the looser your bowels get, so you can customize the amount to what works for you. Any form except magnesium oxide is ok. Mag oxide is cheap and doesn't absorb well. So mag glycinate, taurate, citrate, etc. ME/CFS patients are often deficient in magnesium, and this is one area where it can show up.

    It sounds like your doc thinks you have candida. SIBO is the small intestine. The prescription is for an anti-fungal not antibiotics. If you post your test results maybe we can find something your doc may have missed. For example, it should show if you really need the betaine HCl or not, or if you need to increase your good stomach bacteria.

    I wouldn't do a random diet just because somebody thinks it's good for you. I would do a diet that is personally tailored to you. If you have candida, then you likely have leaky gut, and this is why you react to various foods. You have to find out what those foods are, so you can avoid them and thus lower inflammation.

    There are different methods. You can take a shot in the dark and just eliminate the top 6 problematic foods. Gluten, corn, soy, dairy, eggs and peanuts are the biggies. If you want to start slow, just eliminate gluten or any one of the top 6 you feel might be problematic. Try it for two weeks. See if any symptoms disappear. Add it back in and see if anything reappears. Keep a symptom journal and take good notes.

    One thing my naturopath had me do was a test called Alletess. It was a blood test that tested 100 foods and a few food additives. I had sensitivities to 29 of them! They give you a rotation diet, based on what you can eat, and you can also do allergy drops to eliminate the sensitivities. That was too much for me, so I just avoided the 29 foods. I looked at the rotation list to get an idea of new foods to eat. It was actually a good experience as I picked up a few new foods that I really like.

    Another thing that has been helpful for me is to learn self muscle testing. You can test your food before you eat it or even before you buy it. While not 100% accurate, it's quite good and has helped me ward off many bad reactions. A lot of my reactions are due to food additives and not the food itself...

    There are other gentler ways to kill off candida other than the prescription. I think the caprylic acid you were doing last time was probably fine and the vitamin C was the culprit. I have never heard of high dose vitamin C being used for candida - it sounds like it could be irritating if not buffered. I've never had a problem with caprylic acid, GSE, etc. being irritating. There are other herbs you can try if you're not sure.

    In general, you need to run through the 4R Gut Rebuilding program (linked in my signature). You may also need to treat for ACAT and SHMT if you have those SNPs, as those can affect the gut.

    ps. I've seen Fat ,Sick, and Nearly Dead - definitely worth a watch, although I wouldn't try such an extreme thing myself - it's amazing how you can literally see the weight dropping off the guy day by day!
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  3. xchocoholic

    xchocoholic Senior Member

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    I just started taking Enzymatic DGL prior to meals and it's helping. I only take 1.

    Also when eating meat, fish for you, eating just meat at that sitting helps. I eat veggies later.

    On juicing, I have an oxalate problem and stick to mostly low ox fruits and veggies.
    Romain minus the vein, parsley, dandelion and cilantro minus the stems, apples, radishes, red pepper, red cabbage and I add fresh pineapple for digestion. As long as it's mostly green I feel better from it.

    The stems, veins and seeds are where most oxalates are found.

    kale, beets, ginger, chard, spinach and carrots are out for me. I tried these tho.

    Hope you feel better soon. X
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  4. Plum

    Plum Senior Member

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    So sorry to hear of your problems @justy . Just a few thoughts that sprung to mind:

    I don't touch soya unless it's organic and fermented - too much is gmo.

    You could make fish bone broth if you could get some fish bones (big fish) etc.

    Painful trapped wind - I found charcoal helped with that. Also find Optibac probiotics the best.

    I don't think our bodies are strong enough for juicing much unless it's in addition to what we eat.

    I think the fibre in plants and therefore in juicing can cause pain.

    Gastritis = inflammation and possible autoimmune. Get rid of food allergies. Then eat what you're comfortable with. If that's your usual vege diet then do that.

    I have recently had some relief with meat, half portion potatoes and smallish amount of veg. I can't do salads, cold drinks, eggs etc. But this has worked for me. No point in doing some diet that causes you problems.

    I think if I were you I'd try something simple for 1 meal and then check symptoms and adjust. E.g. baked potato with some cheese and steamed veg with butter. That would be something I can always handle. Then if ok, would add in some protein. If not ok then I'd lower how much potato I ate and see if ok. If not then maybe something wrong with veg. I see a lot talking about no sulphur with gastritis - I keep my cabbage portions small!

    Hope you enjoy Spain :)
    justy likes this.
  5. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Sorry to hear you're having so much trouble, Justy.

    Have you tried GSE (grapefruit seed extract) as a natural antibiotic? I changed my diet largely as a result of reading the 2008 Maes and Leunis paper about leaky gut treatment for ME/CFS. I didn't want to have to do battle with a doctor to get appropriate antibiotics, so tried GSE, and it seemed to work wonders. As I say in my profile, I don't know whether it's because it preferentially reduces 'bad' gut bacteria or whether it just reduces the overgrowth generally. It would seem to make sense that an overall reduction plus the right diet should help the gut to correct any imbalance/dysbiosis. Without first reducing overgrowth, the gut may struggle to do this.

    I took it for a few weeks initially, I think.

    BTW some people use GSE to mean grape seed extract. I haven't tried it so don't know if it's any good.

    I have continued to have short courses (1-2 weeks) of GSE when my bowels start misbehaving again, but the need has decreased substantially.
    justy likes this.
  6. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Cheese is quite high in protein itself - see this page on Cheddar.

    This page lists foods in order of their protein content.
  7. Beyond

    Beyond 10% of discount in iHerb!--> PEZ915

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    Propolis. Propolis in high doses (6 pills) is the only thing that has ever have a significant impact in my gut inflammation. Ironically the other day raw honey gave me some annoying gut pains and propolis took it down completely which is quite amazing. I used the Y.S. Eco Bee Farms brand but we have just found out that near this city a guy sells raw propolis in big chunks. :cool:

    It also improves candida, helps with chronic infections and kills some other bugs. Oh and also increases lactobacilli and bifidobacteria count. It is just like someone designed this thing to be healing. Oh wait the bees did!

    http://link.springer.com/article/10.1007/BF02877715

    http://onlinelibrary.wiley.com/doi/10.1046/j.1439-0507.2001.00671.x/abstract

    I watched that documentary too. I have been juicing now for some months. It helps with intestinal inflammation, my skin looks very good and my muscles are getting bigger and more defined. It just feels amazing to drink 25% of most vitamins and minerals in a big glass of romaine lettuce juice. Natural multivitamin!
    Last edited: Dec 10, 2013
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  8. themjay

    themjay

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    I just wanted to say that I have exactly the same symptoms as you and had the same diagnosis/test results from Dr Myhill. I have tried everything she suggested including all the long term antibiotics and they made me worse, so don't think you are crazy or alone.



    As a life long veggie as well I was persuaded to try some fish – no help. I have spent a fortune on supplements/probiotics so I will try to make some suggestions. When it gets really bad I have needed strong pain killers all day/night, the rest of the time you live with the nagging pain.



    1. Marshmallow capsules / powder
    2. I have found sometimes a short course of amoxicillin can control bad attacks, but not a preventative measure.
    3. http://www.amazon.co.uk/Jarrow-Sacc...70973&sr=8-1&keywords=saccharomyces boulardii Seems to help
    4. Slippery elm powder
    5. Go on a plain liquid diet for a few days – porridge, soup and then introduce maybe plain rice.
    6. Get a protein powder to help – this is the best I found, but pricey
    7. http://www.dolphinfitness.co.uk/en/cnp-pro-peptide-5lbs/2238
    8. Colpermin tablets to some extent (available on prescription)
    9. I tried various candida diets / pills and it did seem to help but all the other ingredients made me worse
    10. And now the really hard one after nearly 30 years I steeled myself and tried some wafer thin slices of beef. Held my nose and had a strong tasting drink! Begrudgingly after 3 weeks of 2-3 times a week my pain is improving I think. This however is something you have to weigh up mentally.


    I hope that is of some help, I feel for you
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  9. xrunner

    xrunner Senior Member

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    I found digestive panels not entirely reliable. I never tested positive for any particular harmful gut bacteria or parasites, yet I improved on both Metronidazole and Ivermectin. Metro was for me a great antibiotic, the one which gave me a lot of improvement overall. I did not have particular problems with my gut but I suffered from gastritis which was later made worse by aspirin. I would not touch caprylic acid, vitamin C, gse or similar as they're very acidic and can make gastritis worse. I found that natural treatments did not work for me, except one called KiB500 (I have no interests in this product) which happened to be effective later in my recovery when antibiotics were no longer working for me as they did at the beginning.

    I think your Dr is right in starting gently with Metro because if you have been ill for some time your pathogens load can be quite high and starting on a full dose may trigger die off reactions (my own experience). Pls note that most antibiotics including Metro are also acidic so they should be taken with precautions for the stomach if you're prone to gastritis and including plenty of probiotics away from any dose. But if you decide to follow your Dr recommedations I would not do it while away on holiday.

    As for diet, it tends to be a subjective thing, with different people reacting differently to different foods. Paleo did not work for me. However, I found that by splitting proteins and carbs into different meals (rather than mixing at every meal) digestion is much easier in my case.
    I wish you a pleasant stay in Spain.
    justy likes this.
  10. A.B.

    A.B. Senior Member

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    A systematic approach is needed to make sense of the situation. Eliminate everything except a few safe staple foods. Then very slowly reintroduce one thing at a time. It's very difficult to single out potential offending foods otherwise. Keep an open mind though, the problem may be one that cannot be solved via diet changes.
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  11. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Have u looked into rifaximin?
    its an abx KDM uses for gut infections followed up be strong probiotics.
    You probably know all about probiotics by now going through what u have been through.
    justy likes this.
  12. justy

    justy Senior Member

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    Thanks to everyone for advice and suggestions. I am not going to do anything until I get back from my trip - I am currently at a baseline I can just about manage so don't want to risk making myself worse. Have packed some slippery elm for emergencies and also started back on magnesium, which I know is a good supplement for me.

    Once again, thanks all!
    Justy x
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  13. South

    South Senior Member

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  14. Ripley

    Ripley Senior Member

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    @justy your gut probably isn't ready for resistant starch just yet. That's something you would do once you've already starved out the bad bacteria and are trying to rebuild your gut. Keep in mind that Dr. Mynhill is recommending a GAPS-like diet. You'd probably be better off going to the source and following GAPS and getting in touch with GAPS practitioners/followers for a few weeks if you plan on sticking to the low carb approach during this time — as they tend to have good success without the need for antibiotics.

    In any case these no-carb diets are not intended for the long term and don't let anyone convince you otherwise. They are really just intended to eliminate/starve the bad bacteria while they are a problem. Eventually (in a few months) you will need to provide fuel for the good bacteria via moderate amounts of fermentable carbs, but that time probably isn't right now.

    If you tried taking resistant starch with a totally messed up gut, my guess is you wouldn't react very well at all. It would probably just feed more of the bad bacteria than the good bacteria at that stage and be quite painful.
    Last edited: Dec 13, 2013
  15. Ripley

    Ripley Senior Member

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    Case in point, here is Chris Kresser who uses GAPS in his practice — in an interview with Jeff Leach of the American Gut Project:

    So, you can follow the low carb approach for a little while if you want to — not too long — and then try to grow and support some good bacteria once you start to feel better!
  16. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I can't follow the chatty style on that site. It's just too long-winded for me. I like facts to be laid out simply and well-referenced. There was another site you linked to (in this thread or another?) that was better in that respect.
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  17. Ripley

    Ripley Senior Member

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    Well, that was a transcript to an audio podcast. So you are supposed to listen to them be chatty :)
  18. Apple

    Apple

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    Hey justy. What gastrointestinal tests have you had? Have you ever seen a gastroenterologist?

    I'm in a similar position to you, and had a test recently which showed I have inflammation somewhere in my intestines. Because of this, my GI is taking me seriously and wants to do tests to rule out an inflammatory bowel disease. I was waking up at night with symptoms (pain, nausea, occasionally diarrhea) and was told that this shouldn't happen with IBS.

    Interestingly I've also been on PPI's for 18 month or so and have gastritis symptoms along with various bowel issues.

    The test I had was a faecal calprotectin via my consultant. I'm not sure how widespread the test is on the NHS, but I have seen it online fairly cheap. I'll have a search for you..
  19. South

    South Senior Member

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    Proton pump inhibitors, the PPI's several people have mentioned on this thread, have serious side effects, I wonder if they are causing more problems for any of you than they solve?

    Here's one article (this one from a very mainstream publication, the New York Times). There are also articles on less mainstream sites that are even more critical of the use of PPIs.
    http://well.blogs.nytimes.com/2012/06/25/combating-acid-reflux-may-bring-host-of-ills/?_r=0
    MeSci likes this.
  20. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Here's a recent thread on PPIs.

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