Gluten and IBS

Discussion in 'Fibromyalgia Main Forum' started by Windytalker, Mar 2, 2008.

  1. Windytalker

    Windytalker Member

    I gradually have eliminated gluten from my diet in the past few months. I'm now 95% gluten free and this has worked miracles relieving much of my IBS pain. Sure, I still have difficulties, but not as severe.

    A lot of my fatigue is also now gone and this includes fewer major FM flares.

    I've had IBS my whole life and I've lived a long time. There have been occasions I've been bedridden with it. Several years ago, I met a woman who was eating gluten-free foods and never made the connection. Dumb!!!

    More and more gluten-free foods are available in HF stores. I even make gravies with gluten-free baking flour. I use rice pastas. Bread leaves something to be desired, but lettuce wraps work just as well (sometimes - it can be a bit messy).

    It's worth a try if you have IBS...

  2. Nanie46

    Nanie46 Moderator


    I agree wholeheatedly! I am glad you finally found that this improved your life so much.

    I have posted alot of info in the past on delayed food allergy testing for food sensitivities and an elimination diet.....and gluten is a very common sensitive food...along with others.

    Anyone who has ibs should try it and I think they would be very pleasantly surprised. Of course, more serious problems should be ruled Celiac disease, etc.

  3. Windytalker

    Windytalker Member

    Nanie46...thanks for your comments. My PCP told he that tests for food allergies were a waste of time. He said the majority were non-conclusive. It's pure trial and error. But, then, I'm not known for getting very good doctors.

    Along with gluten, I have a major sensitivity to MSG. Most foods contain it in the form of "natural seasoning"...but will still claim to be MSG free. I personally believe that the majority of people who suffer from depression may have a sensitivity to "natural seasonings"...and it's in everything(!!!) that's processed. Our bodies get "overloaded". If I accidentally ingest some, the next day I'm depressed, sluggish and want to spend the day crying.

    If we don't look out for ourselves, who will?

    Keep posting on food allergies, Nanie46...many here will benefit from your efforts.

  4. kyra07

    kyra07 New Member

    I have IBS-C since I was...uh...probably 3 or 4 years old! It rarely regulates and am usually happy when it becomes IBS-D just for a change of pace and smaller tummy, lol.

    I've been gluten free (told that I'm not allergic a few months ago but have seen here and from my GP that some people do better without it) for the most part for 3 months. Strange, unexplained rashes went away!!! I am having fewer migranes, but not fewer headaches. But I have acid reflux going up into my sinuses, sigh, which my anti-IBS diet might be making worse. And if I make sure I eat plenty of fresh fruits and veggies, detox tea, avoid dairy (except greek yogurt, essential for my tummy!) and red meat (I will still eat some ultra lean cuts for the heme iron), I can stay fairly regular now. Not 100% and body hasn't adjusted to this yet, but much improved. I decided to bring it back into my diet as a test. Bam! Bad constipation back with vengence. Found certain shellfish to be problematic, as well. MSG too, but I avoid most processed food anymore.

    Had I known sooner!!! So glad you too figured this out. Let us know if you have found any other food issues.

  5. fifthofanickel

    fifthofanickel New Member

    for Microscopic colitis & IBS..My intestines are free of both at this time, I went back on Gluten w/no probs..But I do take Calcium Carbonate as a control for both w/great success...

    Once in a great while, I'll have some loose bm's, but I think that's due to something I shouldn't have eaten. or stress. I have many food intolerances. Can't eat much fruit or veggies at all, etc. Won't go into a list as it would be toooooo long... :eek:)

    So happy you are having success w/the gf..I know their foods are very expensive, but worth it if you get good results. I really didn't have any relief from my FM/CFS while being gf...Wish that would have worked for me...

  6. ellikers

    ellikers New Member

    I'm searching the boards for info on food allergies and ways to avoid them because I have a burning question on my mind:

    How long did it take for you to feel better going off of gluten? Did you feel worse at first?

    I'm feeling SICKER after trying to decrease my potential allergen foods (wheat family, eggs, dairy, peanuts and soy).

    My CFIDS is actually healed (in my opinion) and what I'm dealing with now is a lingering imbalance or at least a recurrent upper abdominal pain problem .... which prompted me to go seek help from a naturopathic doctor since it seems like everyone else gave up.

    I'm just wondering if other folks who have worked on eliminating foods from their diet felt WORSE rather than better at first. When is this supposed to "wear off"? It's starting to make me think this is really wrong for my body.
  7. holiday16

    holiday16 New Member

    much. I'm very strict with it and if I have even a tiny bit my FM flares up. Now that all the other things that didn't fit FM cleared up I've been able to focus on my FM and see what helps. Couldn't tell before because everything was so bad.

    One thing I will pass on is I never tested positive on any test except the alternative one from enterolab. However, I have strong enough reactions that my Drs. agree gluten is an issue. We found all our kids also react. One has never been tested, but her reaction is strong enough there was never any doubt. We recently did a genetic test with her which suprisingly came back saying she had low risk for having celiac.

    With our son we did all kinds of testing and the only one that came back positive was the genetic test saying he was 16 times more likely than the general population to have celiac. Diet trial was recommended and it's pretty obvious he has an issue so they think he does have celiac despite negative test.

    It's just not easy to figure out, but it's well worth it. I would have thought my dd would have been the one that had the celiac genes and here it turned out to be my son who I would have thought was fine.

    I'm working with an NP right now and one thing she said she has found is that people that have trouble with gluten also tend to test high with heavy metals. That was true for me and I did a round of chelation which has helped so much with my energy and mental state.
  8. Dixielanddelight

    Dixielanddelight New Member

    what exactly is gluten and what kinda stuff has gluten...i know nothing about all this stuff and like carbohydrates and stuff...unsure what it all means or what kinda foods has it
  9. dragon06

    dragon06 New Member

    If a gluten free diet is helping you then you should be checked to see if you have Celiac disease. If you do there are a number of other things you can do to feel better. It is important to know that Celiac can mimic the symptoms of IBS and some of the FM symptoms as well.

    You do not need a doctor to have a Celiac test done. You can order your own online. I think there is a very reputable company in Texas that does it. You basically contact them and they send you the instructions and container for your sample and then you send it back to them and they will test it and send you the results as to whether you were positive or not. There is a fee for this obviously but I don't know what it is. And it may be covered by insurance I am not sure. Your doctor can also order the test if your insurance requires that.

    I know quite a few people who have Celiac and after finding out they had it and how to treat it they started feeling like 98% better, I mean there are relapses sometimes and sometimes we break the food rules but you learn to work with it.
  10. xchocoholic

    xchocoholic New Member

    For some ... Gluten acts like an opiod so taking it out of your body creates withdrawal symtpoms. Dairy, soy, corn or chemicals can cause as many problems as gluten so you'll want to eliminate those when you get the chance. Food intolerances produce cytokines.

    Everyone heals from gluten damage at a different rate. I saw an improvement IBSwise and with my narcolepsy immediately, but didn't see any improvement nuerologically until 7 months and then again at 1 year. The myoclonus went away first and then the ataxia.

    Dr. Hadjivassilou tells his patients with gluten ataxia (gluten antibodies in their brains) to stay on a strict gluten free diet for one year. So that gives you an idea of how long it will take.

    There are quite a few articles on how gluten affects our bodies. I see PubMed articles all the time.

    You also have to avoid those foods that say they are GF, but are subject to cross contamination. If you have to have processed foods eat only those made in a dedicated GF facility. Kinickkinick (sp?), Pamela's, Glutino .. come to mind, but there are others.

    I'm not sure how much gluten is allowed to be in foods labelled GF, but even if you don't react to a small amount of gluten, if you eat enough of those you will be getting too much gluten. I can't eat these at all.

    The Paleo diet is our best bet. It eliminates all common allergens and will regulate your blood glucose levels. Easy on the fruit though. Dr. Myhill recommends this diet in her article on Hypoglycemia.

    Once you feel healthy all the time then you can start eating the processed GF foods that may be contaminated. By then, you'll know when something affects you. Other than that you should stick to those companies that are dedicated GF facilities ... The risk is too great ...

    HTH ... Marcia

    PS. I had to do more than eliminate food intolerances in order to start feeling healthy most of the time.

    If you have hypoglycemia symptoms, like anxiety,weakness or brain fog, you should go on the Paleo diet. Be aware that your BG stick test may not test positive for hypoglycemia and you are still feeling crappy. I feel crappy at a low normal blood glucose level. I feel best when it's over 80.

    And if you have low blood pressure or orthostatic intolerance, you should salt load. John Hopkins has an article on this. I use Himalayan sea salt and spring water. It's helped quite a bit. My BP hasn't been low since June 2008. That was only after 1 month of salt loading. I still have to this this ... we all need salt ... [This Message was Edited on 09/21/2008]
  11. ellikers

    ellikers New Member

    I don't have celiac (I don't have noticeable problems with anything wheat related and I've had an endoscopy that revealed nothing). I'm asking about going wheat free because my naturopath is convinced I must be allergic to wheat, so I'm trying to go off of it.

    I'm not having negative emotional or mental affects, but gut just feels horrible. It's hard to try something new that supposed to make you feel better when it actually makes you feel worse.

    Dixielandelight- you asked what gluten is, it's the protein found in wheat and other grains that some people have an allergy or sensitivity to. So it's in ALL foods that have wheat or a grain in them.

  12. xchocoholic

    xchocoholic New Member

    Don't forget when you eliminated gluten, etc from your diet that you added something else. Sounds simple, but so many miss this. I did ... And you can be sensitive to any food. I just realized onions were tearing me up ...

    If you've suddenly started eating salads / raw foods all the time your digestive tract is going to complain. You won't have the digestive enzymes you need for this. Now in time you will be able to eat all the raw foods you want .. I do .. but it's taken me a long time to get there.

    And it was trial and error all the way. Tomatoes once week were ok, but too many and I was sick. Especially tomato sauce .. raw are easier on me. Probably because raw foods have enzymes in them that help you digest them.

    The most important part of healing your gut is to keep it calm. If it means going back to a bland diet from time to time. I heard from a realiable source that our guts will heal in 3 days if we stop traumatizing them. It's like a scab that needs to heal. Keep bumping it and it will never heal, but leave it alone and it will heal.

    Digestive enzymes help some and not others. And some digestive enzymes are good for some but not all. I'd stick to fresh papaya, mango and pineapple for now. Eat small amounts of these 2 or 3 times a day. BE CAREFUL with digestive enzymes, there are some that cause "D".

    HTH .. Marcia

    [This Message was Edited on 09/17/2008]
  13. ellikers

    ellikers New Member

    Thanks for the response xchocoholic, those are good points. I think I have been eating more meat and more corn products because I'm trying to build up what I'm now lacking in my diet (and I wasn't told to avoid corn, yet).

    I guess I'm mainly frustrated because after years of IBS, I finally stabilized my touchy tummy with a great herbal blend to take with eating (helped rebuild my gut) and found a diet that worked for me ... and I've had 4 years of great tummy health (the rest of my body fell apart because of CFIDS, but my intestines were great! Regular BMs, etc)

    And now I'm being told what worked so well may not work, and I have to try to change it, etc. I'm trying to be flexible and openminded but it's hard when something ELSE worked so well for so long!! <whine!>

    But I'm staying open ... still trying the new diet although more gradual now (I'll eat some wheat/beer each day, but not nearly as much).

    Thanks again!!
  14. luvdogs

    luvdogs New Member

    I've had IBS for years, and now am much better (in that respect), because I do probiotics, fiber, and a mostly gluten-free diet. The question I have for others: are many people with fibro/CFS gluten-intolerant?

    Also, try Bob's (Red Mill?) gluten-free bread mix and make it with a bread machine. Gluten-free bread can only be made with a high-powered mixer or a bread machine. It's really good. Also I add ground flax, millet, or buckwheat (I grind these grains in a coffee grinder), to make a more whole-grainy type of bread.

    My only regret is that when I'm in a restaurant I tend to cheat, by eating hot fresh rolls, or pasta.
  15. xchocoholic

    xchocoholic New Member

    Trust me. I know how hard this is and how unfair it is, but it's worth it. You don't have to kill yourself doing this though. Set a reasonable timeline and stick to it. Your timeline is totally up to you though.

    I absolutely hate it when someone tells me to give up some food that I'm not ready to. (I can be sooo stubborn) ; ) I shed a few tears along the way while watching others eat foods I couldn't have anymore.

    I feel healthy most of the time now (at rest anyways, I'm still working on my ATP/mito problem) and I can really tell when I've gotten some gluten or any other food that I'm intolerant of.

    Once you've reached the point of feeling healthy most of the time, you can try the cross contaminated processed foods. I just bombed on it, but maybe I was eating too much ... It's hard for me to resist these foods if they are in my house. I'm back to my Paleo diet ...

    Some can handle grains just fine though. You may not know though unless you are feeling good to begin with. If you eat these foods I'd stick to those manufactured in a dedicated facility.

    There are so many GF foods now too. I have a new favorite. Liberty Bakery, in Oviedo, Fl, it's owned by 2 mothers of autistic kids. So they know all about food intolerances. They have a website and will ship, but I'm not sure what that does to the bill. I get mine at a local HFS. Make that got mine ... lol ...

    I understand that we really need to avoid all processed foods. I have to admit that I feel so much better when I stick to the Paleo diet. Dr. Myhill recommends this and my new integrative doctor is saying it's the best diet for us too.

    I've been experimenting the last month with processed foods and I noticed I don't have the strength that I do on the Paleo diet. I cleaned both my front and back patios yesterday, so I'm not sick, but I didn't feel completely healthy like I have been.

    These processed foods / grains don't have any nutrients and my body craves nutrients. I don't take nutritional supplements because they make me feel toxic, so I eat organics.


    I understand what you're saying. Treating / managing this DD can be soooo frustrating. I've been trying to get dairy back into my diet for the last month. (Hmmm, maybe it wasn't the grains making me feel a little weak... )

    Anyways, I could handle kefir or yogurt for the past two years, but not anymore. It's giving me the runs and lots of gas now. But I can eat lactose free cheese without having any digestive symptoms. (OK, I just put that cheese in the freezer so I can re-introduce it later. Maybe that was making me feel weaker. )

    It's confusing to say the least. It's so much easier when you have an immediate reaction. ..


    Can you post your recipe ? It sounds like what I've been looking for. Not that I can have it on a regular basis. My doc wants me back on the Paleo diet. She says that I can have 1 cupcake once a week. LOL ...

    I'm not big on all the GF products made with rice flours... And it could be that I just can't handle rice. thanks ...

    Good luck with this ... Marcia

    PS. I try to look at the new foods that I've found. Like avocados, coconut oil, organic berries, etc. And the health benefits of course.

    [This Message was Edited on 09/21/2008]
  16. luvdogs

    luvdogs New Member

    Because I have both Fibromyalgia and IBS, does that necessarily mean I'm gluten-intolerant? I've never been tested for celiac disease, but just assumed I'd better try a gluten-free diet. Of course, if I'm cheating, I guess that means my diet isn't entirely gluten-free. And yes, I feel sick all the time, but my GI symptoms are better. I have far fewer stomach cramps.
  17. xchocoholic

    xchocoholic New Member

    The jury is still out on whether or not there is a direct relationship between gluten and FM. There just haven't been enough studies on this.

    What makes this difficult is the inability to avoid gluten. It's in our foods, meds, cosmetics, glues, etc. Some of those on the GF diet still have gluten in their houses too which makes being 100% GF a lot more difficult, if not impossible.

    I've seen people who say that they got rid of their CFS/ME/FM by eliminating gluten, or all food intolerances, or certain chemicals, like MSG, or treating candida, or by eliminating mold, etc.

    IMHO, our DD is from an accumulation of toxins that our bodies can't handle. It can all be one toxin (as in candida) or it can be from a combo (gluten, dairy, candida) or whatever combo you have.

    The GF diet is a good place to start, but it's not necessarily going to heal you. Although it has happened before ... You should look at this DD as an onion. And it's up to you to peel away those layers to see what's going to help you. Everyone has their own onion ... LOL ...

    HTH .. Marcia

    PS. I keep forgetting to mention that I've met quite a few people now who are finding relief from gluten cross contamination with the digestive enzyme DPP-IV. There are various brands, but I use GlutenEase. Just stick to a reliable brand name and you should be fine though ...

    PPS. Hopefully you know that food intolerances are from leaky gut / dysbiosis. Some will heal by removing the offending foods and some will need to treat this. See Karen's info here on Gut dysbiosis.

    PPPS. There is a good deal of info on the web about all of this. Please check this out for yourself.
    [This Message was Edited on 09/18/2008]
  18. ellikers

    ellikers New Member

    I agree xchocoholic, it would be SOOO much easier if I had an immediate reaction! I'm not even having a mild positive feeling after almost 3 weeks of it. My IBS just seems to have a now full blown flare up that I haven't had in 4 years.
  19. xchocoholic

    xchocoholic New Member

    You may have celiac disease and if you do it will take time after removing gluten for you digestive tract to heal. I can't remember off hand if you were tested / scoped.

    Try drinking aloe juice and stick to a bland diet.

    Here's what I did to help me get over severe IBS ...

    I ate organic baked chicken and fish, salt only, pepper caused pain.

    Cooked peas and asparagus. Organic plain applesauce. Pears without the skin. And a little white rice because it's bad for blood glucose.

    And I ate a ton of fresh papaya. This did the most for me as far as digesting my food.

    You can make digestive enzymes from the papaya seeds too. Just bake them at 200 degrees for about 90 minutes or until completely dry. Then after they have cooled put them in a pepper grinder. They just taste ok, but they sure work.

    Oh and I ate baked potatoes (no skin) with EVOO and salt. You can also add a little candied ginger and a few raw cashews.

    And I almost forgot ... I ate cooked millet, buckwheat and quinoa. I used to put EVOO, grapeseed oil or flax oil in my grains right before eating them to get my EFAs (EFAs help you heal). These fats are only effective if raw. GF grains with the veggies on top was my meal 3 times a day for at least a year.

    I honestly can't remember how long I did the first step. But now I'm eating pretty much whatever I want. You have to re-introduce foods slowly.

    I see some saying to overload your body on a food to see if you're sensitive to it, BUT if I had done that I'd never have been able to add back all the foods that I have.

    Hope you feel better soon ... Marcia

  20. Windytalker

    Windytalker Member

    I started this thread and haven't been back for a while. All I can say is...WOW...great...lotza good info.

    I'm so fed up with doctors that I try things on my own...and do what works for me. Forget study will tell you this and another will tell you that. Sometimes these studies are "sponsored", I'm not too trusting in that department.

    I've also had good luck using Bob's Red Mill GF products...but I do have to be cautious. In some blends, bean flour is used and that can cause my IBS to act up. Thanks to liquid Beano, this stays under control most of the time.

    I've met people who don't have FM...and they're gluten free (not on any doctor's advice). They've found for themselves it causes bloating, etc.

    One thing that helped me through the "withdrawal" stage was yogurt...and the organic Greek type seemed to help the most.

    Some suggested the Paleo diet (bought the book years ago)...that's fine if you live where you can get the types of foods suggested in it. I live rural (HF stores are few and far between) and I absolutely can't "grow my own". Plus, I absolutely refuse to give up my string beans...LOL!!!

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