Sunday, September 16, 2012

Gluten-Free/Dairy-Free Diet Update

Well, it has now been 7 weeks since my son, Jamie, and I started a gluten-free and dairy-free (and oat-free) diet, on the advice of a biochemist/dietician we have been consulting for Jamie (see previous post for the details).

Jamie says he has not noticed any difference.  He is definitely running out of patience for the restricted diet!  He's been at college for three weeks now, and, although his college has an excellent gluten-free diet program, it is tough to be 18 and watch all your friends eating your favorite foods when you can't.  He says his GI symptoms actually worsened a bit, but that is almost certainly due to the change to on-campus eating.  Though he is eating healthy foods, it is a different diet than at home, and his GI system is always sensitive to changes (like when we travel).

As for energy and overall well-being, he is definitely doing much better, as I reported earlier this week, though we think that is mainly due to starting beta blockers.  It is impossible to tease out individual cause and effect, as he started the diet 7 weeks ago, started beta blockers 4 weeks ago, and we have added a bunch of new supplements (on the advice of the same specialist) over the past 3 weeks.  However, during the first 3 weeks of the dietary restrictions - with no other changes - we didn't see any change.  It is possible, though, that some of his improvement is due to the dietary changes and "unblocking" his methylation pathways.

As for me, I have definitely not seen any improvement overall nor in energy, but my GI symptoms are much better.  I have grown accustomed to constant GI discomfort - cramps, gas, bloating - every day (I am usually OK in the morning, then the symptoms hit me hard in the afternoon and evening).  These are almost completely gone on this diet!  Now, I'm not sure whether eliminating gluten (and oats) has anything at all to do with this improvement or if it is just because I have been so much stricter in avoiding dairy.  I developed a dairy-intolerance when I got CFS, but over the years my habits have slipped, and I was "cheating" a lot!  Now it is clear to me that I need to be strict about it, and that my problem is not just lactose but likely casein (a milk protein).  On the other hand, I have been a bit constipated on this diet, despite lots of fruits and veggies - my body is definitely missing my daily oats and whole grains!

So, that's where we both are.  Jamie agreed to try this diet for six weeks and it has now been seven, so he wants to quit.  I am hoping to convince him to go slowly and gradually when adding foods back in so that we can really watch the effects.  It has been a struggle to get him to continue the daily record-keeping on his own - I have done it for him for the past 8 years!  But he will be home today for his Sunday morning gluten-free pancakes and his medicine refills, so hopefully, I can convince him of how important it is to keep careful records while transitioning back and to go slowly.

As for me, I will probably try adding oats back in first because I really miss my morning oatmeal!  Being gluten-free doesn't bother me that much, so I may continue it - not sure yet.  I do know I definitely need to remain strict about the dairy-free part.

I meant to list some of our favorite gluten-free and dairy-free foods also, but that will have to wait for another post later this week - this one is too long already!

I am interested to hear about other people's experiences with restricted diets - anyone experience significant improvement?

Time to make the pancakes!

Sunday Evening Update:  Jamie decided to hang in there with all the diet restrictions for 1 more week since we are changing something else this week (adding D-ribose and creatine back in - he has been forgetting to take them since he started college!).  He says he wants to start adding foods back in when there are no other changes going on so we know for sure the diet didn't affect him and he never has to do this again!  lol  I will let you know how it goes...


  1. I have been eating gluten-free for about a year. Six weeks into it, I didn't feel any better, but I fell into a terrible relapse. I figured the diet wasn't doing me any good, so I intended to go off it. I had one granola bar, and got terrible stomach cramps which convinced me that I was indeed gluten sensitive even though I didn't feel any better off gluten. So be alert for that sort of outcome.

    Don't give up on oats. There are good certified gluten-free oat brands

  2. Hi, same Sue here. After a two-month long mystery rash, I am 95% sure now that it is a soy allergy. I feel better not eating soy, more energy, and whatnot, but like with Jamie's situation, There are too many other things going on – starting a new med, in particular – tp be able to credit the absence of soy with the improvement. All I can say is that I am dairy free too, not so good with corn either, and am running out of things to eat!!

  3. Hi, Sue -

    Thanks for sharing your experiences. I had a similar experience when I first tried to give up dairy 8 years ago - 2 weeks off dairy didn't seem to change anything, but when I tried to add it back in, the effects were VERY obvious!!

    That's why I am cautioning my son to go slowly. He has decided to add dairy back first - says he misses his milk and ice cream the most! He already started - had a huge ice cream cone yesterday at his college's dairy 9they have amazing homemade ice cream) and said he didn't notice any problems at all.

    But our reasons for trying this diet are NOT because of food intolerances. if you look at my previous post (linked to here in the first paragraph), you'll see this is supposed to help him feel better overall, not address GI issues. Same with the oats - I am not avoiding them because they have gluten contamination but because oats contain a protein similar to gluten which can also block methylation processes.

    We are also supposed to be avoiding corn and soy, but as you say, there wasn't much left!! So, we have reduced corn and soy but not eliminated them completely.

    We will see what happens...


  4. our dd is on 10 months of dairy, wheat, gluten and SUGAR free. Sh also didn't find she felt much better at the start. However she has had a couple of time of introducing wheat into diet and boom she then notices it.

    I'd encourage your son to introduce one thing slowly and see how he feels over 3 days.

    He may find he has an intollerance and can still eat it but only limited abounts eg not every day.

    Our dd introduced more items at a birthday party and boom a crash. She can now tell food does help or hinder.

    Love Leanne

    ps research into sugar i'd sugest next.

    1. Thanks for sharing your experiences, Leanne!

  5. Sue. I've been on a strict no grain, no legumes (so no soy, corn, beans), no dairy for a year. The diet also eliminates all processed foods including what area called "industrialized seed oils" which means everything but olive oil and coconut oil. If I want to sweeten something, I use stevia. Corn products are in almost every prepared food you buy and I've been shocked to find that sugar is in almost everything -- like prepared guacamole from the deli at our supermarket. This diet is strict! It's called the Paleo Diet but isn't really "what Paleolithic people ate"! There's more to it than just no-gluten/no dairy but that's a quick summary.

    But...I'll never return to my old eating habits. I started the diet because I was told it's anti-inflammatory and might return my immune system to normal. In other words, I hoped it would "cure" me (yes, another hoped-for cure). Well, that didn't happen but I've lost 20 pounds and more importantly my health has definitely improved. I bounce back faster when I overdo. I still can't travel because I'm too sick but, for example, I went to my granddaughter's birthday party yesterday -- an hour away -- for two hours. This would have been unheard of for me before this diet. Today, I feel very drawn but I won't be "down" for days.

    I had to go through the disappointment of not getting well but once that passed, I was able to focus on the plusses of the diet.

    Instead of dairy, I buy coconut milk from Amazon and use it like cream -- in decaf coffee and other things. If I refrigerate it, I love the taste.

    I hope this has been helpful.

    1. Thanks for all the info, Toni. I;ve heard a lot about the Paleo diet but could never get Jamie to try it! It's just too restrictive for an 18-year old boy - his tastes aren't as broad as mine. And even I would have trouble with no legumes! We eat lots of beans here. Though the biochemist/dietician did recommend limiting certain beans to just twice a week (something about oxalates?)

      I like coconut milk, too, though for certain uses, I need the protein in soy milk.

      I am so thrilled to hear the diet is helping you, Toni!!! That's great news!!


    2. P.S. Your first comment came through just fine, Toni - no need to rewrite or resubmit.

      And congratulations on losing 20 lbs - I expected to lose some weight on the restricted diet but haven't lost a pound! :(


  6. Hi Sue, I'm struggling with many diet restrictions too. I'm a vegetarian on a gluten free and sugar free (anticandida) diet and I find I can't even eat fruit. Until recently I resisted the idea that I might be dairy intolerant too, but I've now found that by cutting out dairy I do feel better (fewer headaches and a little more energy). I still have lots of bloating though so haven't found all the answers yet. I'd be really interested in which beans you've been advised to limit? I eat so many pulses.

    Well done Jamie for taking so much responsibility in his choices about when to reintroduce suspect foods!

  7. Hi
    I have been on a replacement diet for the past 18 months and no longer get IBS attacks. I still get a little bloating and wind but nothing close to how I was. I don't get crashes in the same way. I now have days when I need to rest but that is very different to the massive flu or 'food poisoning' type symptoms.
    I still have oats and rice.
    I use mostly soya milk, but have some lacto free in decaf coffee. Soya usually curdles.
    I've cut out artificial sweetners (aspertame), caffiene and MSG completely. These are toxic for most people in my opinion.
    I try not to have nightshades (potato, tomato etc). I have sweet potato now.
    I don't have yeast (bread, marmite) or moulds (mushrooms and quorn)
    I don't eat pulses. there are some fruits and veggies that are not recommended.
    Eggs are not recommended but I do have them occasionally
    Nuts are not recommended apart from brazils.
    I've cut down on meat and have mostly fish.
    I'm working at replacing fats and oils with something better now. Canola(corn)oil is in so many things and again creates toxins.
    I drink lots of water to help flush out toxins.


  8. I crave what I can't have. I've just had a spell of REALLY craving cream crackers. I knew there was wheat in them so shouldn't have many. Once I started I couldn't stop ! I've just realised its not the wheat that is the problem but the fats ! I put dairy free marg on them and they also contain fats.
    I've now replaced this by eating celery with humus when I crave (usually at night)

    I keep to the diet about 80%. I know when I've had something I shouldn't. Some foods have proven to be more toxic than others. I think this depends on the individual.

    Have you read The Lectin Story? It does google.

  9. My symptoms are not gone completely but really improved. (theres no cure for this condition! )I was put onto my diet through the Rosedale Clinic in Reading Berkshire (which does google). He's been working at re balancing my system.

    More recently I've been able to use a Far Infra Red (FIR) bio mat and found further improvements to the point where I feel I need a FIR system at home.
    I haven't been able to work since 2007 so finances are really difficult. I have been given a little money now and my FIR cocoon (like a space age sleeping bag!) has arrived. I'm due to start using it from home tomorrow.
    I found my cocoon through the dr Myhill site. Google Dr Myhill FIR.... if you scroll down you'll find links to Get Fitt among other things. On there there is a good pod cast which expains FIR therapy well.

    This further detoxification from heavy metals and pollutions, I'm hoping, will further help my fibromyalgia and CFS. The more toxin free I can get the better I am. but peoples triggers are individual to them. My brother is caeliac. for me dairy and yeast are a real major triggers. I don't have much wheat but can cope with a little accasionally. Your son may react to different triggers than you. I certainly didn't accept my sensitivities without A LOT of research and food diaries. I can keep to this because I know what the side effects feel like. I don't eat poisons cos they hurt!


  10. Theres also an element of working against acid build up. I've also looked at a good alkaline diet, which seems to agree with the diet Rosedale clinic has given me. I've found it useful to see what works towards a more alkaline body system.

    If I am really bloating I find using Apple cider vineger (with the mother in it) can help me. A table spoon full in half a glass of water doesn't taste that bad. Again its easy to google and isn't expensive. the 'mother' is important. Its an enzyme thing.

    I also take co enzyme Q10 to support my mitochondrial function (am) and magnesium to help with pain (pm). These alongside a basic multi vit and min and some cod liver oil and vit D3 through winter.... also really help me.

    I hope this info is useful to you.
    good luck with your research for you and your sons x
    sorry this is a long reply. I'm quite excited about my own recovery road x