More fatigue/weaker after starting Gluten-free diet

Discussion in 'Fibromyalgia Main Forum' started by tgeewiz, Jul 30, 2009.

  1. tgeewiz

    tgeewiz Member

    Hello all.

    Due to years of digestive problems, I decided to start a gluten/corn free diet in April 2009.

    About six weeks later, I began feeling much weaker. In addition, my Fibro supplements seemed to stop working.

    I went to my doctor and found out that my Vitamin D25 - Hydroxy level was low. Everything else was normal.

    Has anyone else experienced this? Would the low Vit. D explain this?


  2. cfsgeorge

    cfsgeorge New Member

    yes low vit D levels can easily explain your weakness. supplement and get some sun!

    If you don't have a gluten intolerance or celiac disease, there is no reason for you to be on a gluten free diet. You would be healthier eating grains in your diet IMPO.

    Treat only what is wrong with you through blood, lab, or physical exams not just through "theories" or what you read online. This is why your doctors tell you not to go online!!!
  3. rachel76

    rachel76 New Member

    It does not seem right that you avoided both corn and gluten. I think it would be better if you tried eliminating them one at a time. Then you would know what caused the problem. Corn and gluten are totally different substances. You might be reactive to one and not to the other and be avoiding them both when it's only one you need to avoid.

    I also don't eat corn. I eat spelt bread instead of wheat. Wheat gives me pain but spelt is sort of OK.
    I noticed after a while that my IBS constipation was worsened on days that I ate spelt bread so I went on a gluten free diet for a week and felt much weaker on it. I phoned my dietician and he said that people often feel weaker when they go gluten free because cereal grain can be strengthening. He suggested that I eat one day with spelt and one day without it. Sometimes people only eat gluten once every 2 days. I only eat 2 small slices of bread a day and I always have periods of time that I miss eating it.
    BTW I'm not a celiac.

    This is just a suggestion but maybe you could try alternating as well.

    Though It might be lack of vitamin D and other things causing th weakness so I don't know. But weakness on a gluten free diet is what happened to me as well.
  4. xchocoholic

    xchocoholic New Member

    Certainly low vitamin D can make a person tired but so could whatever foods you put in your diet when you took out the gluten and corn. I'm not saying that you're doing this but those GF goodies are full of carbs and other crap. And some people are sensitive to rice or any of the other flours or ingredients in them. Even guar gum and / or xanthum gum, used to hold the gf flours together, can be a problem.

    IMHO ... we all need to go on the Paleo diet which eliminates all grains, soy, dairy, egg and all chemicals out of our diets so we can heal. This is what most (all ?) integrative / functional doctors are recommending. Quamijay has links for this but it's readily available on the web too if you just google functional or integrative medicine. The Paleo diet is just organic meats, fruits and veggies. Just the stuff our bodies actually need and knows what to do with ...

    My integrative doctor believes in treating the patient NOT the labs. I was told this when I asked her if the fact that I get dark circles around my eyes from DAIRY and yet my TESTS are NEGATIVE for DAIRY meant I could eat dairy ... and she said those dark circles were my bodies way of telling me that dairy wasn't good for me. So the answer was "NO !!"

    Did your doctor test anything other than your D level ? Being low on iron, B12, etc can also make you tired.

    [This Message was Edited on 07/31/2009]
  5. ladybugmandy

    ladybugmandy Member

    i went to an integrative medicine doctor before i began antiviral treatment for CFS. he made me do an elimination diet too, avoiding gluten, wheat, and some other things. i also began to feel much weaker on the diet. i have no idea why, though.

    sorry..guess i wasnt much help!
  6. SnooZQ

    SnooZQ New Member

    Most commercial GF foods are NOT fortified w/B vitamins & folic acid. A good B vitamin supplement ( like stress vit, B50, etc.) can be helpful.

    When we remove major food items like corn & gluten, one of two things must happen: 1) we replace those items with something else or 2) we just eliminate them & eat the "other stuff" without replacing.

    Not uncommonly, replacement foods can also be a source of intolerance. Rice allergies, amaranth/quinoa reactions are not the rule, but they do occur in some people.

    Also, people sometimes also take the easy way out & eat the "GF junk" as replacement foods -- since it's relatively easy (though not inexpensive) to do that.

    Since both corn & gluten are in the majority of items in the std American diet, it's possible you are getting generally short-changed on total food intake or carbs. Some people do well on paleo diet, but fast metabolizers often need more carbs than paleo advocates recommend.

    Gluten is a source of opiate-like chemicals that affect the brain. Loss of feeling of well-being is not uncommon until the body recalibrates & starts producing more of its own endorphins. This is especially true if someone is avoiding dairy (another source of opiate-like chemicals) in addition to gluten.

    You might try keeping a food diary for a week or so, then making an appointment with a nutritionist for comment.

    I've been with a gluten intolerance group for 9 yrs & have seen a lot in that time.

    Best wishes.

    [This Message was Edited on 07/31/2009]
  7. rachel76

    rachel76 New Member

    I disagree with what you are saying xchocoholic about us all going on the Paleo diet.
    I have been on something similar to that and it nearly killed me and it has done harm to other's I know.

    I may be on a restrictive diet but not that restrictive. Also eggs can be very nutritious and easy to digest for some people. Even when my digestive system is in a real super mess I usually find I can still digest a boiled egg without too much pain. I don't think that eggs are in the same category and soy and chemical additives. Also I found replacing cows milk with sheeps/goat milk better than getting rid of all milk altogether. This subject of elimination diets and intolerences is very individual and what works for one person does not work for another but the Paleo diet is too extreme. It really damaged my health.
  8. xchocoholic

    xchocoholic New Member

    here's a link to the foods allowed on the Paleo diet ..

    Sorry to hear you almost died on this diet, but I don't know how eating foods that our bodies were designed to digest could hurt anyone. Did you get a balance of meats, fruits and veggies ? Did you add a meat, fruit or veggie to your diet that you were intolerant of ? Did you make sure you got enough calories ?

    I can't see my last post but I'm allergic to egg whites, so I just eat the yolks ...

    Most of the Paleos I know aren't strict / rigid Paleos. I'll eat fatty meats or organic bacon from time to time. I can't see the point of stressing over getting an A+ in Paleo dieting ... lol ... I'd say I'm 98% compliant though.

    FYI ... I don't consider this a restrictive diet at all. If you look at this list of foods you'll see plenty of options. My shopping cart is as full as anyone else's but I've got tons of veggies, meats and fruits as opposed to all that processed crap they call food.

    The biggest problem I see with this diet is that we have to learn to cook our own foods and not rely on those quick, carb filled garbage foods that we've been told are Health foods ... Once I got the crap out of my diet, I had the energy to do this ...

    TC... Marcia
  9. SnooZQ

    SnooZQ New Member

    Let me say to start, I'm not sure what Rachel's problem with paleo was, technically, in terms of how it made her so sick.

    But from personal experience as a very fast metabolizer, I have to say that I wouldn't do well on paleo.

    Fast metabolism can be genetic. In our family, (until old age sets in & things start to slow down), it's not unusual for people to need a minimum of 200 g of carbs/day -- preferably closer to 400 g. More carbs if more than moderately active. Without it, we're keeling over --literally. Headache, nausea, vomitting, pale & weak. If we do 400 g +/day of carbs by way of fruits & veg alone, we'd be living on the throne in the little room.

    Just my take, from personal experience.

    I have many dietary restrictions myself & must cook everything from scratch. My diet is healthy & balanced, but it's not paleo.

    If there's one thing I've learned over the years, it's that one person's most excellent diet doesn't necessarily help the next person.

    Best wishes.
  10. rachel76

    rachel76 New Member

    The diet harmed me because first of all it was a drastic change all at once for an already weakened body.
    Second you were right in that I did not get enough calories and nutrients on it.
    Thirdly both eggs and sheep/goat yoghurt/dairy which are taken off the Paleo diet are actually digested and tolerated quite well for me so I lost an important nutrient source there. I must stress that it was goat/sheep yoghurt that were good for me. Not cow's dairy which has different proteins in it and gives me pain.

    OTH a lot of fried or even raw vegetable food that is OK on the Paleo diet makes me ill. Like I always get a stomach ache after eating onions, garlic, cabbage, carrots and fruits containing lots of fructose sugars.

    I suppose we all different. I wish it were easier to find out what suits us each individually.

    If the Paleo diet works for you then that's good.
  11. xchocoholic

    xchocoholic New Member

    This diet is a drastic change for most people. We've become accustomed to grabbing something off the shelf or from a take out window and eating it regardless of what's in it. I'm as guilty as anyone. My favorite foods were cheetos, snickers, balogna, Taco Bell, etc etc ... and I'd still be eating this crap if I thought I could eat this crap and recover from this DD.

    I started on this diet after losing 10 pounds in June 2005. Everything I ate at that point was hurting my digestive tract. I either had severe constipation or severe diahrea or gas or GERD or Gastroparesis or diverticulitis. And my colonoscopy showed hemeroids and colon polyps ... This diet has stopped all of that. Granted it took awhile but my EGD and colonoscopy were perfectly normal in March 09. I even had a hiatal hernia which is gone now too ... Needless to say, my doctors are pleased with my progress. : )

    Funny story ... I was wondering why you were talking about eggs being a no no on the Paleo diet and then I saw that I'd written that above ... lol ... oops, my bad .. eggs are allowed ... The funny part is that obviously, you didn't look at the link I gave or else you'd have caught that too ... EGGS are ok ...

    Folks, IMHO, it is just common sense that not everyone will be able to handle all of the foods on the Paleo diet or any other diet. These diet protocals are a guideline not a bible !! Anyone notice that if you eat a box of Weight watchers healthy whatever, you won't lose weight ? lol ...

    I've even added healthy fats and a few meat fats to my diet to keep my weight up. I have a fast metobolism and drop weight very quickly without these fats. And I have to avoid all high oxalate foods unless I want kidney stones and vulvodynia ... no thanks, I'm good ...

    Dr. Myhill was the one who started me on this diet. She has an article about how CFSers have blood glucose problems and that this diet over time can fix this. Just google Myhill hypoglycemia.

    gotta run ... I have a lot more energy now that I'm also able to take nutritional supplements. TC ... Marcia

  12. rachel76

    rachel76 New Member

    I'm surprised you mentioned Dr Myhill. I went to her and it was her elimination diet combined with EPD injections that made me deteriorate so badly.

    I had a look at it on the net and couldn't help thinking that the Paleo diet was very similar to a gluten and lactose free diet. You were very lucky that the Paleo diet helped you. It did not work for me. I remember being encouraged to try Myhill's diet because I read about other people who were helped by it. How I wish I hadn't.

    Dr Myhill herself said that she tried the Paleo diet on people and they got "stuck" meaning that like me they got worse and reacted to other foods. It does not suit anyone and Dr Myhill as a doctor knows the dangers and that some people like yourself are helped and some like me are harmed. So she should not be automatically putting everyone on this diet. Another big problem is that there is a lot of fructose in fruit in the Paleo diet and some people with CFS can't digest that.
    As you can tell I'm not a big fan of Dr Myhill and am very angry with her... oh well. I hope I haven't strayed too much from the original question.
  13. xchocoholic

    xchocoholic New Member

    Sorry to hear you've had such a rough time with this. I can understand your anger with Dr. Myhill if she didn't help you and caused you to get worse. Didn't she have an answer for you as to why this happened ? Saying that some patients are getting "stuck" doesn't tell you anything. What kind of answer is that ?! Geesh ... I would have expected more too ...

    I didn't actually start on the Paleo diet until about 2 years after getting the gluten, dairy, soy, corn and chemicals out of my diet. But, I didn't know about the Paleo diet back then. In 2005, my ex GP started me on the elimination diet (no wheat, corn, soy, dairy, eggs, etc) due to my sudden weight loss. That stopped the diarrhea and I no longer felt jittery or had narcolepsy.

    But then for some reason, she got really bitchy with me when I eliminated gluten and started feeling great / totally healthy for a few minutes at a time. It never lasted long though. I finally stopped seeing her when she threatened to send to to a shrink for trying to heal myself from CFS/ME/FM ... I think her head spun around in a complete circle on that visit ... lol ...Since then, I've had to learn all this on my own because I didn't have a doctor who could help.

    I was eating whole quinoa, buckwheat, brown rice, beans, etc for the first 2 years until I figured out my low blood glucose problems were causing me to feel light headed and weak quite a bit. For 16 years, I thought this was just a symptom of CFS ... DUH !!! I'm so stupid sometimes ... I knew that eating a snack with some carbs + a protein source brought it back up to normal but this started happening regularly and making feel like I was going to faint. I couldn't get out of bed in the mornings without feeling like I was going to pass out.

    It was her article on CFS and hypoglycemia that led to to go on the Paleo diet a couple of years ago. So, I owe her one !!! Around that same, I read an article about a study done at a zoo where they had humans eat nothing but Paleo foods for a few weeks and it helped their blood glucose levels.

    So that was it for me ... Paleo it was ... and it's working great. I did however have to stop eating those high oxalate foods. Hmmm, I wonder if this is the wall you ran into ... Did you have UTIs or kidney stones or vulvodynia ? That'll make you feel like crap ... I'm sure that there are other symptoms for too many oxalates but those were mine ...

    Honestly though, from what I've witnessed on the web, some people have problems with nightshades or phenols or whatever too so any of those could've been making you feel worse. So far, I appear to be good with those other groups ... KOW ..

    Did she have you on probiotics ? They have to be good ones too. I find that if they make me feel better within 20 - 30 minutes, then I've gotten a good one. My understanding is that the liquid ones are the best. Oh and we need to rotate these ...

    Just trying to figure out why this didn't work for you. : )

    I can't eat much fruit myself .. Maybe the Paleo diet was just too much too soon ... Are you up on the DAN protocal ? I'm no expert, but I know that most DAN docs tell the parents to go slowly in removing gluten and casein because it's an opiod for these kids. So maybe the withdrawals were too much for you. I didn't stop all gluten at once so I don't know how an adult would do ... I'd felt like crap most of the time for 15 and 1/2 years by then so if I went through withdrawals, it was nothing new to me.

    I've been reading Dr. Myhill's info for several years now but I've never seen her. I live in the US though. I certainly don't know her whole protocal for her patients and I was pleasantly surprised when you said that she was using EPD injections. I've been thinking about how to treat my severe allergies, esp to gluten, and this may be an option ... It appears that I have esonophilia (sp?), but my doctor and I haven't discussed how we're going to treat this yet. She's an integrative doc so I have no idea what she'll come up with ...

    Have you eliminated the gluten and dairy out of your diet ? That alone appears to help quite a few. I don't see it as the "best" or quickest way to heal but it's certainly a start ...

    For sure if I could find a way to heal from this DD and eat anything I wanted, I'd be there ... lol ...

    TC ... Marcia

    [This Message was Edited on 08/25/2009]