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How long to try gluten-free diet?

Discussion in 'Addressing Biotoxin, Chemical & Food Sensitivities' started by Jenny, Feb 10, 2010.

  1. Jenny

    Jenny Senior Member

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    Anyone got any advice on how long to try a gluten-free diet? I tried this decades ago for several months with no improvement, and have been trying it again for the last 6 weeks. Getting worse, so I'm tempted to give it up.

    Jenny
  2. Frickly

    Frickly Senior Member

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    It takes about 4 months to rid your body of gluten but my son's doc says to give it six months for infractions. I would also suggest taking digestive enzymes with each meal in case you get a hidden source of gluten. I took my son off gluten and casein and it took about 4 months to start noticing a difference. Also, if you havn't done so, go online and get a list of ingredients to look for on labels that are hidden sources of gluten. There is a learning curve but hang in there as I think it is worth the effort. If you do not improve then gluten may not be a problem for you so then might want to rid your diet of casein which only takes about 2 weeks to get out of your system. After this you might want to look at phenals, artificial pres and colors. Good luck.
  3. IntuneJune

    IntuneJune Senior Member

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    Jenny, gluten-free is very in depth. You may or may not know how technical your research should be.

    For years I was on a wheat free diet because I was diagnosed with wheat allergy, tested negative for gluten intolerance. So I did the wheat free thing.....well, I did in fact have celiac disease and although was getting a small amount of gluten, it was still doing damage to my intestines.

    When I went completely GLUTEN free, my symptoms improved. The information out there states give the intestines a year to heal. That is not saying you will not see results. I saw results within one week. And remember, I was not eating wheat......

    Celiacs cannot cheat and eat "just a little." It is zero tolerance. This includes your medications, toothpaste etc.

    I was tested repeatedly for celiac, tests came back negative, but after that period of time, I was diagnosed with an immune deficiency and I will not test positive on many tests.

    June
  4. brenda

    brenda Senior Member

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    It's about 2 months since I went gluten free, very strictly, at the same time as dairy free. My bowels show a significant improvement and my skin feels better more softer. I have tried it in the past but was not so strict so I think that it is necessary to be strict. I do use digestive enzymes too. The rest of the improvements are subtle and there are steps forward and back but I surprise myself at times in what i can do now and I think my brain is working better.
  5. alice1

    alice1 Senior Member

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    I've been gluten free for about 2 months now and have felt only a small improvement.But as everyone here has said it can sometimes take months so I'll continue.I was also told that there could be a bad patch before feeling the benefits.If this is true maybe one of you more experienced gluteniods could confirm.Thanks.
  6. Frickly

    Frickly Senior Member

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    Hi Alice, symptoms could get worse in the beginning, it certainly did for my son but we are all different. I think the improvements, if gluten is indeed a problem, are sometimes very slow to come and sometimes very subtle. Once you have been strickly off gluten for six months then it is important to add some back in your diet paying close attention to how your body reacts.
  7. alice1

    alice1 Senior Member

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    Hi Frickly, why reintroduce it back into the body?
  8. Frickly

    Frickly Senior Member

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    Alice, it can be very difficult to nail down which foods cause us which unwanted symptoms. The improvements can be slow and subtle so once you introduce the food back into your diet it should become apparent what problems this particular food causes on your body or mind. If removing gluten has drastic improvements on your health then you may be happy staying here. If it only provides a small improvement or none at all then you may want to try eliminating other foods from your diet in the same way. Gluten is the most time consuming as it takes so long to completly rid your body of gluten. Eliminating other foods such as casein, dairy, phenols, food coloring and pres, ect. should be much simpler..

  9. Jenny

    Jenny Senior Member

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    Thanks everyone - I guess I should carry on a bit longer. That gluten-free bread is vile though!

    Another question though - I don't seem to have any digestive problems, apart from occasional constipation. I hardly ever get diarrhea. I'm taking digestive enzymes now but didn't have any probs before either. Are digestive problems the main reason to suspect gluten may be a problem?

    Jenny
  10. Frickly

    Frickly Senior Member

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    Jenny,

    If your body is unable to digest gluten then it will build up in your system and cause all sorts of problems. My son did not have any "obvious" gut issues but have found that some foods have a profound affect on his brain. In those who have this problem it can cause hyperactivity, anxiety, fatigue and a feeling of unwellness. There are many good books on this subject and lots of info on the web about the interaction between gluten/body/brain. It can also cause inflammation of the gastrointestinal tract, impair the immune system and leave you vulnerable to yeast such as candida. My daughter is harrassing me to "do something fun". I hope this helps a little.
  11. Mark

    Mark Acting CEO

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    Jenny if you are feeling worse could it perhaps be something you are eating more of now on your gluten-free diet that's actually more of a problem for you than the gluten? I found gluten-free made me worse, and only understood why years later when I got a blood test from Allergy UK (via Sainsbury's pharmacies, don't know if they've now rolled that out nationwide or not) which showed up loads of sensitivities I hadn't suspected in addition to the obvious ones I knew of. Once I discovered I'm even more sensitive to soya and egg than I am to gluten, it all made sense; my diet is incredibly limited now (about 10 foods, would waste away without smoothies!) but my gut symptoms are under control. Of course none of the allergies/sensitivities that Allergy UK were able to identify by blood are recognised under NHS testing by an allergy specialist, because they are not that type of allergy, but isn't it funny that Allergy UK managed to showed positive tests in the blood for everything I'm sensitive to, and even managed to get right the things I already know I'm not sensitive to - such as dairy, which I knew I was fine with and was one of the 3 common allergens out of 12 on the test that I didn't test positive for.

    Incidentally on this test you get to see how strong the reaction was, and I think it's some kind of antibody test. The interesting things with my test were first that it took them nearly an hour to manage to fill a tube of blood via the 'fingerprick' test, they went through every finger on both hands and could barely squeeze out a sample; both nurses had done hundreds of tests and never had this problem, which wasn't mentioned in the training either. The second interesting thing was I tested sensitive to 9/12 environmental and 9/12 food triggers. I think they said the norm for the allergy patients they tested was maybe 1, 2 or 3 - typically, confirmation of one specific trigger. Of course, once again this testing counts for nothing with the NHS (who can find nothing wrong with me on anything to do with allergy/sensitivity) because the Allergy UK test isn't recognised. The fact that it was perfectly in line with my predictions as well as filling out the gaps I was looking for in a way that has proved correct since in practice...all of that counts for nothing scientifically of course, to anyone but me...but such experiences do give me a certain insight into the potential for significant blood test findings to be considered invalid by the NHS....in that I myself know for certain that this one is a proven example...

    Anyway: I'd recommend this test, or similar broad spectrum sensitivity testing, to everyone in the UK (and I mean everyone not just those with ME/CFS! Useful to know what your body does and doesn't like, no?), it's a private expense of course but these two cost me about 100 as I recall and it was the best 100 I ever spent. Other than that, the way forward really is an elimination diet IMO: there are lots to choose from I think but on the best one I know of you get down to a very basic but sustainable diet for about one week - which may be beef or some other meat (vegetarianism now a luxury I can't afford I'm afraid, and note that everything should be pure and organic to eliminate the possibility of additives and pesticides confusing your findings), sweet potato, peas, little more than that for a week or so, until known symptoms are relieved, then start adding in a new food every 3 days, starting with ones that you like and think are OK, and if you get no reaction you can add that to your list of allowed foods. I now find that I can sometimes recognise when I've eaten something my gut doesn't like within an hour or two of swallowing it - as soon as egg hits my gut I can feel it...

    All just one person's experience of course, but I hope it's helpful. :Retro smile:
  12. Jenny

    Jenny Senior Member

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    Thanks very much for this Mark - I had no idea Sainsburys have pharmacies!

    I have had allergy and food intolerance tests in the past, and been on elimination diets several times, with no change. But that was a long time ago, and I should imagine things change with this illness over time.

    There's all sorts of reasons I could be feeling worse - eg stopped and started all kinds of supplements and abx in the last couple of months. I've found it's usually impossible to assess the impact that any one treatment has. This is partly because I fluctuate wildly even with no treatment (got well in the past several times over a few months while on nothing and no special diet), and also because I've been doing several long term things which theoretically might eventually be doing something (eg been on Simplified Yasko for nearly 2 years so perhaps methylation is kicking in and that's why I'm worse). There's just so much going on, over different timescales.

    I'm puzzled by how people seem to be able to definitively attribute their improvement or deterioration to a particular thing. (Sorry I'm getting off the topic, but this is one of my hobby horses!)

    Jenny
  13. Mark

    Mark Acting CEO

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    One likely explanation of course is that we have different conditions, another is that the condition itself expresses in different ways. But for me, to cut short yet another long story I'm about to tell, it's taken 15 years to identify key factors, one every few years, through chance breakthroughs really, and only very recently have I learned enough of the multiple patterns to separate causes and effects with confidence. Usual caveats apply: everything here is of course only my experience and will only work for you if you have something the same or similar to what I've got, which is multiple atypical immune sensitivities triggering multiple (CFS) symptoms, experienced as relentless fatigue when in constant contact with something I'm sensitive to - as I was for many years when unknown to me, my clothes and bedding were constantly wearing down my energy to the point of exhaustion.

    In my case I feel - currently - largely recovered in the sense that, after a decade of gradual but confusing improvements and relapses with perhaps a general upward trend, trying all kinds of things and never being quite sure what worked, now I've reached a stage where by avoiding almost all physical activity, striving to avoid and filter everything from washing powders to perfumes, eating a very restricted diet, etc etc etc, that only now when I'm identifying the last few triggers - maybe one a year - can I really feel confident that I really am noticing cause and effect. (Oh and by the way I do still regularly relapse for a day or two at a time and have to detox thoroughly, that's the way it goes at the moment).

    Again, it's only me, but the explanation of how I personally progressed from frustrating confusion over the patterns - just as you describe Jenny, for years and years - is: painstaking experimentation, trial and error, expensive tests usually pointless, eventually leading to one or two key breakthrough observations (perhaps after a few blind strokes of luck to just take the right supplements or medicines). I suppose one key thing was a year when I said: right: devote pretty much every spare minute to health for one year: try everything on this huge list of things, try everything feasible-sounding that people have suggested, from food to environment control to meditation and supplementation - all at the same time. I went off gluten then too (and btw: smoothies, rice or corn pasta, potatoes and veg are my replacement for bread btw, not the gluten-replacement sort of stuff really although I do still steer well clear of gluten most of the time and that showed fairly strong on the test).

    After a period when I had eliminated so many things that I was probably only getting 3 or 4 triggers regularly (plus the standard background triggers of mild colds/flus and events involving inflammation), at that point it began to be possible to have correct suspicions about associations between specific foods and the 12-24-hour delayed on/off switch of digestive/sensitivity/fatigue symptoms. Before I had the Allergy UK test I had just got the suspicion of egg as a trigger and was starting to test by elimination: so no surprise when egg was one of the 3 new triggers identified by the test and the other 2 proved accurate also (soya explaining SO much!).

    In summary, the way I think about it, right or wrong, is this: if there are scores of potential triggers, some acting immediately and some delayed by hours, then even after you've figured out all the secondary and tertiary symptoms, you're not going to easily observe the primary triggers in action until you've already worked out or guessed most of them, and although you get tantalising clues before that point, there's so much background noise that all your theories keep apparently falling down. Don't lose hope and trust your feelings: don't be put off by confusing observations, accept that it really is as complex as it seems. There's so much to complicate the picture: some or all of food sensitivities, invisible environmental triggers, hormonal triggers (making the process I've described dramatically harder for women of course), viruses, inflammatory events, and more I'm sure.

    I hope this isn't all just frustrating to read, I know it would have been for me a few years ago so I'm sorry if so. All I can do is share what worked/works for me - for the time being at least - and hope it's helpful to somebody. :Retro smile:
  14. girlinthesnow

    girlinthesnow Senior Member

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    Mark, like you I have narrowed down to a diet of very few foods. I now eat a paleo diet with no dairy or beef and minus all lectin foods. This is not really enough. I try to not too much of any one food but can't rotate foods because I don't have enough food types to go around. Recently I have lost chestnuts, and umbelliferae ( carrots, celery, etc) so soups are thin and boring.

    I keep hoping that someone will become interested in doing research in this wide and almostly entirely ignored field. I would be very happy to give money to research to anyone who would seriously investigate what is going on in food intolerance. The whole allergy field is so archaic, I was treated with EPD (enzyme potentiated desensitization) for food intolerance by Dr McEwan in the mid 1990's and got substantially worse, never recovered from this.

    Why is FI so common in M.E. to the point where it is pretty much universal in the community?
    No-one who doesn't have M.E. FI understands it. They think it is about some bloating, wind and feeling a little under the weather. If I eat my IFs I go from a 6 on Dr Bell's scale to a 3 -2 and remain there in a dark room for 4 days, the first day of which will be a fast. The first sign that I have eaten an IF is I begin to run into things, fall down, then the pain starts.
  15. Victoria

    Victoria Senior Member

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    From July to end Sept 2005, I was 100% grain & dairy free. I only ate organic meat, fruit, vegetables, nuts & seeds and fresh fish (which actually wasn't organic, but was the best fresh salmon I could buy at that time).

    I ate no processed, tinned, frozen food. No preservatives, colourings, additives etc.

    I felt the best I had felt in 25 years, & for about 3 months comletely symptom free.

    Early 2009 I started off again (with good intentions), but only lasted 3 months.

    I still continued to eat fresh organic food (97% Paleo diet), but chocolate biscuits at work crept into my day. And my favourte rye sourdough bread with caraway seeds crept into my weekends.

    it is said that the foods you crave the most, are often the addictive foods which you are sensitive/allergic to.

    I'm inclined to agree with this statement.

    Having finished my job today & having months ahead of me to quite literally do nothing but seek some healing & good health practices, I hope to be back to the organic Paleo diet 100%.

    I have been cleaning out my fridge, freezer & cupboards for 2 weeks now, so tomorrow's shopping at the fresh food market leaves no excuses for not doing the dairy/grain free diet that gave me such a positive result in the past.

    But it does take time & willpower to stick to some of these restrictive diets.

    Patience & will power are crucial to achieving positive end results.

    And in some cases, it takes quite a long time of trial & error to work out which individual foods (or food groups) are causing your problems.
  16. Jenny

    Jenny Senior Member

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    Yes, it's incredibly complex Mark. One very wise consultant said to me recently that we probably only currently understand less than 10% of what goes on in the body. I certainly haven't lost hope - I've had long periods of good health - but I'm afraid I have no trust in my feelings about what's going on whatever. And this is after 28 years. My feelings have been proved wrong time and time again. Nothing has consistently worked.

    I have no idea why I have terrible relapses - it's certainly not 'over-doing it' or 'stress'. They come completely out of the blue.And when I think something's helped to get me out of a relapse before, I try it next time but it does nothing.

    For me, I think most of what's going on is the illness taking it's natural course, whatever that entails. But what's so difficult to come to terms with is that on the one hand the sense that it has a life of its own and so you have little control over it, but on the other you have to constantly think about what you should and shouldn't be doing so that you don't get worse.

    I suspect that one of the things that's going on is that we've got a large number of pathogens which we've collected over the years due to immune dysfunction. Some of these will be pathogens that haven't yet been discovered. The only thing to do is to keep trying different things, just on an empirical basis. But I've almost reached the conclustion that I might as well just pick things at random.

    So glad you are feeling better on your diet.

    Jenny
  17. brenda

    brenda Senior Member

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    See my post on Alternative Thread - Allergie Immun.

    This treatment is said to address FI and they say that it is not necessary to avoid the foods when on the treatment - in fact they advise you not to. I am in two minds about this and do not want to eat gluten and dairy yet. Some people who have been doing the treatment are reporting that their allergies have gone and they can now eat what hey want - ah the thought of it :)

    The treatment is to retrain the immune system.
  18. Luke

    Luke ooph

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    Have you tried this stuff? Definately the best I've come across, bit pricey though.
  19. Jenny

    Jenny Senior Member

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    As it happens Luke my husband got me some of this a few days ago. Sainsbury's have it.

    You're right it's much better than all the other stuff - and cheaper than some.

    Many thanks.

    Jenny
  20. IntuneJune

    IntuneJune Senior Member

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    There are days Jenny I feel hope is the ONLY thing I have....

    Our illness is a ful time job, so frustrating. This leaves us with at best little time for recreation. at worst, inability to provide for ourselves and family.

    Constantly thinking about what we should be doing/having is exhausting in and of itself. When I leave my house, I must anticipate how long I will be out and pack meals if the trip includes meal time.

    Food shopping,geeezzzz, I envy those who can run in and pick something up. We don't buy much in the way of prepared foods, however, for example, I don't make mayonaise or mustard. Every time I purchase these items, I must read the label even if I have been buying that same product for years. I try to control my anger in the aisle when reading the back of a box/bottle...... (it's a good thing I don't buy many) and the ingredients state among other things "vinegar." Vinegar, vinegar, "VINEGAR" i want to yell, "WHAT KIND, WHAT SOURCE." Some vinegars are okay, apple cider, rice, but others could be wheat-sourced.

    I call manufacturers if I have bought an item -- which maybe or maybe not I can use but the rest of the family can, I ask if their product is gluten free. Sometimes it is okay. I tell them "if your product is on the shelf and the one next to it says gluten-free, I will buy the gluten-free item."

    Celiac disease is more prevelant in Irish/English heritages, I would hope shopping for you would be a little bit easier, that England would be more aware of this problem. But again, so time consuming.

    We have come to understand that our "disease" is multi-factorial. Would it not be wonderful to have ONE not-yet-discovered virus as the culprit and to get diagnosed and treated in the near future.

    Until then, we do know our immune systems are dysfunctional, stressed, depleted, over-worked to the point of not working, our energy/lives are going down the tubes, so it is in our best interest to help our immune systems out. It is tough, it is time consuming, but sifting through the rubble, investigating what is upsetting YOUR immune system the most and eliminating that I believe improves your odds.

    Jenny you are already working hard at this, it does get depressing and tiring, and it is NOT fair. IMHO, we need to make educated choices rather than random choices for a better outcome.

    June

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