Is there a connection between CFS Gluten

Discussion in 'Fibromyalgia Main Forum' started by Daneboa, Sep 13, 2006.

  1. Daneboa

    Daneboa New Member

    Hi All,

    I wanted to share this article with others on the message board and get your opinions. Has anyone tried this diet? Researched Celiac disease? Or been mis-diagnosed with CFS and found out later it was Gluten intolerance.


    Article written by: Frann Leach

    CFS or chronic fatigue syndrome is a growing problem. But according to the US Centers for Disease Control and Prevention, there are: (quote)no physical signs that identify CFS... no diagnostic laboratory tests for CFS... no known cure for CFS [and] no single therapy exists that helps all CFS patients.(unquote) In other words, CFS is Bad News.

    There's a list of symptoms which can lead to a diagnosis, including extreme fatigue that has lasted at least 6 months, waking up tired after a night's sleep, memory and concentration loss, pains in muscles and joints, severe headaches and sore throat. Sufferers may feel completely drained after any activity, mental or physical, for more than 24 hours afterwards. Not all patients experience all symptoms.

    If you suspect you may have CFS, it's important to go to your doctor, as other diseases can cause similar symptoms. However, if you already have your diagnosis, you're probably feeling pretty fed up about it. After all, the whole point of getting diagnosed is so that you can get the solution, isn't it? But according to the medical profession, all you can do is treat the pain, and basically do as little as possible for months or years until, if you're lucky, it goes away by itself.

    There is one possibility that may be worth a try, though. It may be a bit of a long shot, but there is a certain amount of research to make it worth going into further.

    Chronic fatigue syndrome is often linked to gluten intolerance, the most severe form of which is celiac disease, which has many of the same symptoms. So if you are looking for a possible solution to this problem, and you have given up on the doctors (or they've given up on you), one option is to try going gluten-free for a few weeks and see if it makes any difference.

    Gluten is something we all eat large quantities of every day, because it is found in wheat, barley and rye (and a similar protein is also found in oats). It's not that easy to avoid gluten completely unless you're in charge of kitchen supplies.

    The first thing to do if you are going gluten free is to go through all the kitchen cupboards. Throw away all wheat based products. This includes flour (all types), pasta (spaghetti, macaroni, linguine etc.) bread, cakes, biscuits, crackers and cookies. Have a look at the labels for everything. Discard anything that mentions barley, rye, wheat, flour or starch (unless it specifies vegetable or potato starch). Cheap ketchup usually contains flour. Don't forget to check the fridge and the freezer. Low fat yoghurt may be thickened with starch, grated cheese may be coated in starch, and so on.

    The easiest way to work out what you can eat is to imagine you're on a low-carb diet, eat the sorts of food recommended (but NO FLOUR), with the addition of potatoes and rice.

    If you like to eat out, it's best to go to very healthy types of restaurant, where they are familiar with gluten free cooking concepts, or you could choose to go Indian or Chinese. Just remember to avoid the breads and the noodles (although rice noodles are fine) and ask them to leave out the monosodium glutamate (this mainly applies to Chinese food). Wheat is a fairly recent introduction to both these cuisines, so the selection is much wider than you will find elsewhere. Do ask them not to thicken the sauces for food you are going to eat, though.

    If you try this diet for a few weeks, you will most likely be able to tell reasonably quickly whether or not it is helping you with your CFS. And with that information, you will be in a position to decide whether to go gluten free for life.

    Good luck!

    ©2006 Frann Leach

  2. vickiw

    vickiw Member

    I tried a gluten free diet for six months and didn't feel any better in terms of the CFS symptoms. I gave it a try because my brother is gluten intolerant (...maybe even Celiac. He never went for a test).

    I have some food sensitivities, but so far, no change in diet has helped the CFS - for me it has just helped things like sinus headaches, and intestinal discomfort. Eliminating sugar and caffeine has evened out the flow of what very little energy I have.
  3. Michelle_NZ

    Michelle_NZ New Member

    I could eat what ever I wanted before I got sick 3 years ago. However, as soon as I was ill I became gluten intolerant. I dont have Celiac but staying off the gluten does cut down on the nausea, headaches and fatigue for me.

    I suggest to anyone with CFS to at least try it for one month, then try eating a sandwich and see what happens - it might take 3 days to get a reaction, but some get it almost immediately.

    Its really not tht hard to be gluten free once you figure out what you're doing. It just takes some forward planning ot make sure you have food with you that you can eat if you need to - I always take fruit, nuts and gluten free protein bars with me whenever I leave the house. Actually, it makes it easier to not eat crap, which is a good thing.

    Take care
  4. nerdieduckie

    nerdieduckie New Member

    I have fibromyalgia and it was discovered that I'm allergic to wheat (not celiac, however) but I definitely noticed a decrease in my symptoms once I started eating wheat/gluten free.
  5. Daneboa

    Daneboa New Member

    I have been on this diet for 3 days only but, do seem to notice a small difference. Mainly, I am sleeping better at night and backpain has lessened.

    My doctor thought that I should try this for one month and if I noticed improvement be tested for celiac disease.

    Last week I had a "learning moment" when my female Great Dane weighted in at 96 lbs. Normal weight for a girl her size in 110 (low-side)to 140 (high-side). I had noticed the weight loss about 6 weeks ago. I knew that Danes can lose weight during the summer heat and this year has been awful. Hot, humid and dry.

    I talked to several other breeders and was told that "fat = weight" so increased her fat content. When she did not gain weight I asked my vet to run a blood panel on her and it came back showing her triglycine levels at "6". Normal is 250 to 1000. I took her back in the next day after feeding her and her blood serum showed "no absorbtion". The vet suspected maldigestive disorder but did one more conclusive test to be sure this was a lack of enzymes in her pancreas. Basically, I was watching my dog starve to death and other than finding hog pancreas' to put back the enzymes on a daily basis, there was nothing I could do about it.

    On Tuesday the vet called an told me he got back the test results and she DID NOT have maldigestive disease. I had taken her off the high fat diet several days before and she had gained 3 lbs over the weekend.

    I suspect that the high content fat diet had inflamed the pancreas and caused the absorbtion problem.

    This is when I started studying in depth the effects of diet on the body. I called the U of Minn research team on small animal research. This started my learning process on high content fat diets, high protein diets, and gluten intolerance. Dogs and humans are really not that different and share about 95% of the same functions.

    I am at this point convinced that diet plays some role in CFS. Not a cure but a way to reduce symptoms.

    Of note is that maldigestive diesase is related to insulin resistance, cardio problems, thryoid disease, some types of cancer and depression.

    The GF diet has been a lot easier than I thought it would be. As a result I am being more creative in my meal planning and adding foods that I don't normally eat. I've added more veggies, more fruit and more fish.

    Lunch today "tuna stuffed tomato". My dog gets a good dry dog food with a tablespoon of low-fat yogurt mixed in for taste.


  6. xchocoholic

    xchocoholic New Member

    Sounds like we are on the same path here. I found out last year that diet makes a huge difference in how I feel.

    And sadly, the importance of a healthy diet is greatly under emphazized in the role of healing.

    I'm into eating healthy fats like omega's and E to help me with my Fibro. We'll see.


  7. cct

    cct Member

    I have rigorously complained to my primary care physcian for years (15 years) about my severe intestinal pain. He did not have any suggestions on how to deal with the problem because I am chemical (drug) intollerant. (He is a typical American doctor who believes that drugs and surgery are the only solutions to any real health problems!)

    About six months ago someone suggested that I get my allergies tested again because it had been so many years since I had last been tested (20 years ago).

    I found that I was allergic to all grains!

    I discontinued grains that same day and my intense intestinal pain stopped!

    Grains, gluten, pain. . . . was the connection celiac disease? I did a little research on celiac and then I made an appointment with my doctor.

    I went in to ask him for the celiac disease test. After discussing my reasons for wanting the test, he agreed that it might be good to have a confirmed diagnosis. He began to write up the order.

    I stopped him!

    Having done a little bit of research, I knew that a person has to be consuming gluten at the time of the test. I asked my doctor about the gluten requirement and he said that it was not necessary to be eating gluten because once the antibodies are formed, you will always have the antibodies and a celiac test would be valid anytime after the antibodies were formed.

    I asked him to double check his information against mine because I did not want to take the test unless I was absolutely sure that I was taking the test correctly. We went into his office, he looked in his medical information, and . . . . I was right!

    Not only do you have to be consuming gluten, but you have to consume it for 3-4 weeks before the test!

    If I had done as my doctor suggested, I would have tested negative for celiac because I had not been eating any grains at all.

    After so many years of suffering with severe intestinal problems, I was not willing to return to eating grains in order to get a test that might show that I needed to stop eating grains! I had already stopped the grains/gluten and I was feeling better. The stomach pain was much improved.

    However, removing gluten from my diet did not effect my CFS in any profound way. I still have all of my CFS/FM symptoms.
  8. xchocoholic

    xchocoholic New Member

    I just needed to ask a quick question here ...

    For those you who still have cfs symptoms after getting the gluten out of your diets, can you tell me what symptoms you are still having ?

    And did you look into and treat your nutritional deficiencies caused by celiac ? Did you look into blood sugar problems ?

    My myoclonus is gone, I have more energy, my brain fog is mostly gone and I haven't needed a motorized cart in over 2 weeks.

    I am a little tired, so that has me slightly concerned, but I'm getting out almost everyday and on the go most of the time.

    My sleep has been perfectly normal for the last week. (First time in 16 and 1/2 years)... I get sleepy, fall asleep without any problems, sleep 7 - 9 hours, and wake up refreshed. I might wake up once, but then I fall right back to sleep.

    Am I going to crash ?? Did you feel normal / healed for any length of time after going gluten free and before your cfs symptoms came back ?

    Thanks xchocoholic
    [This Message was Edited on 09/14/2006]
  9. vickiw

    vickiw Member

    hi x,
    To answer your questions...

    - what symptoms you are still having?

    Fatigue and flu-like symptoms. They never went away. I cannot walk very far, or stand or sit very long. I crash badly if I don't rest frequently and if I operate outside my "energy envelope."

    One interesting note - Last week I started adding gluten (wheat, rye and/or barley) back into my diet after roughly 8 months, thinking it didn't bother me after all. A couple of days before that, I realized I'd been having little or no achiness or pain.

    On the second day of eating gluten, I had a small "healthy" whole grain bagel for dinner. By bedtime, I had stomach pains, and I was crashing and in a lot of generalized pain. After spending a day and a half in bed, I pulled the rest of the bagels out of the freezer and read the ingredients (should have done this BEFORE I ate it). The second ingredient was something like "ultra gluten" or "Super gluten." Something along that line - I had never heard of it before.

    Anyway, it was a one-time thing, but it sure seems like cause-and-effect. I'm cutting the gluten out again. I keep a symptom log, so I'll be watching for pain level vs gluten-free diet.

    - did you look into and treat your nutritional deficiencies caused by celiac?

    I've been taking various supplements but nothing specific for Celiac's. I've gradually cleaned up my diet over the past year or two. Not that it was really bad compared to the standard American diet in the first place.

    - Did you look into blood sugar problems?

    I've had blood sugar levels checked with regular bloodwork. No fasting-type tests. All the bloodwork I've ever had for anything has come back normal, including one for Celiacs.

    I no longer eat sugar except for the occasional bite of very dark chocolate (less than once a week). The only sugar substitute I use is stevia, and seldom at that.

    I sure hope you don't crash and that your sleep continues to be refreshing! Have you been taking treating nutritional defiencies? Anything specific that you'd recommend?


    [This Message was Edited on 09/18/2006]
  10. xchocoholic

    xchocoholic New Member

    Thanks for replying,

    I am anxious about my symptoms returning. I have been sick too long to think this is over.

    I am not nearly as tired nowadays, but I'm finding that I still have to rest. I seriously overdid it Saturday, so I crashed Sunday.

    For your fatigue and trouble standing - Have you tried eating more meat or protein during the day ? I have to eat protein every 2 or 3 hours right now. Meat works best.

    Also, celiacs don't absorb vitamins correctly since the villi in our small intestines is destroyed. Having pale lips is common. I've met others on the celiac board who had mobility problems and recovered.

    We normally test anemic for iron and B vitamins. I use poly vi sol baby vitamins and baby iron because of my stomach. And I do B12 injections.

    Sure sounds like you had a typical gluten reaction to that bagel. I feel like I ate nails when I eat gluten. It comes out that way too : )

    I understand you can test negative for celiac and still have it especially if you were already off gluten. They are recommending people try the GF diet just in case.

    good luck with this ... let's hope it works ... xchocoholic
  11. ChrisNewton

    ChrisNewton New Member

    50% of people with Celiac disease do not have any gastic symptoms. ie no bloating, cramps, diarrhoea, weight loss.

    This is because the part of there duodenum that is effected is higher up. Although it does not give the gastro type symptoms it is still very real and causes malnutrition from the malabsorption of vitamins and minerals. A recent study in Australia showed that the people without gastro symptoms had the worse malabsorption symptoms because they were left so long with it. My husband is believed to have undiagnosed celiac for his whole life. When diagnosed a lot of his CFS symptoms were resolved. He had vitamin D, Folic acid and iron deficency. After 6 months some of his fatigue, all his bone pain, most of his joint pain, and his muscle strength all improved. Celiac disease gave him osteoperosis and osteopenia.

    Celiac disease is as common as 1:100.
    You can not be diagnosed with celiac disease if you are already on a gluten free diet - because the antibodies do back to normal and the villi in your duodenum grow back.

    The first step is to have the blood test WHILE YOU ARE STILL EATING GLUTEN.

    It took 3-6 months till colin felt better, but even after 12 months his vitamin D and folic acid levels were at the low end of normal.

    I have a lot of celiac links on my web page

    Wish you best

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