gluten intolerance and ME/CFS


Phoenix Rising Founder
FIghting Fatigue often has great posts and is another good one - on gluten intolerance and ME/CFS.

I have been reading a very interesting book by Dr. Stephen Wangen, the gluten-free doctor, Healthier Without Wheat and I have found the book to be rather fascinating. I wrote recently on Fighting Fatigue about how Celiac Disease can be misdiagnosed as ME/CFS but I never realized that Celiac Disease is only one type of gluten intolerance. You don’t have to have Celiac Disease to have an intolerance to gluten-containing products.

While reading this book I have discovered that many of the symptoms that we suffer from with ME/CFS are also common symptoms that people who have a gluten intolerance suffer from. Here are some of the symptoms of gluten intolerance in adults:

Abdominal pain
Headaches, including migraines
Muscle aches
Joint pain
Mental fogginess
Anemia (iron or B12 deficiency)
Frequent illness
Itchy skin
Low bone density

How many of the above symptoms can us ME/CFS patients say we have? I can check off most of these.

Emotional symptoms experienced by gluten intolerance include:

It just amazes me by reading this book how much I can relate to the examples he includes from patients who have suffered from gluten intolerance and/or Celiac Disease. The more I read the more convinced I become that I need to try an elimination diet to see if I notice an improvement in any of my symptoms. I have thought about doing this many times before but I have never followed through with it because I love products that contain gluten, particularly bread. Wheat bread is my favorite and I eat sandwiches almost every day for lunch using wheat bread. It is going to be a hard habit to break but it will be worth it if I start to feel better.

Here is an excerpt from Healthier Without Wheat on gluten intolerance:

Many people, probably many millions of people, have a non-celiac form of gluten intolerance and experience one or more of these problems (see the list of symptoms I wrote above). Because the conditions associated wtih non-celiac gluten intolerance have more than one potential cause, and because so little research has been done on non-celiac forms of gluten intolerance, it is difficult to say how often these symptoms are caused by a gluten intolerance. It is possible that gluten intolerance is the cause far more often than most people currently suspect. Recent studies estimate that non-celiac forms of gluten intolerance are approximately 30 times more common than celiac disease and may affect up to 15% of the world’s population.

I’m not a physician, nor do I tend to make this post sound like ME/CFS is caused by gluten intolerance. I am just wondering if maybe my particular situation couldn’t be helped by cutting out gluten products. I am going to finish this book, do a little more research, and go shopping for some gluten-free food items to see if after a few months I notice an improvement in symptoms. It’s worth a shot and what’s the worst that can happen?

Have any of you ever cut out gluten and noticed your symptoms improving? Let me know!

Related posts:


Senior Member

I am stuck with eating them when we have to rely on the food bank at times and I invariably notice the difference in many ways. And I always am better when I can get the heck off the stuff again.

Something else, some people with acute sensitivity to gluten have powerful cravings for the stuff. The more you crave it, ... perhaps the more sensitive you are to it?

Fortunately, the longer you can stay away from it, the more the cravings will fade. I find that if I'd had a few days of bread or rolls or whatever, even when I don't have to eat it anymore ... I want it. It takes a few days for the craving to disappear again.

My motto -- Don't feed the Candida. :D


Senior Member
Melbourne, Australia

all I can say on this subject is that from July - Sept 2005 (3 months) I was 100% grain & dairy free (& I mean literally 100%) & I was 100% well (FM or no FM).

At that time, I felt the best that I have been all my life (that I can remember).

Agan early this year, I was almost 100% grain/dairy free & once again, I was nearly 100% well. The reduction in pain/fatigue is really significant.

I can't seem to last more than 3 months though. It's almost like a 3 month toxin cleansing of my whole body and once I finish that 3 month fast, my body wants to eat badly again. I think I mentioned a craving for chocolate biscuits at work in recent months. Last night, I found my old Vega allergy testing results from back in about 1989 I think it was. Chocolate recorded the highest result for being allergic/sensitive. It even recorded higher than wheat.

I believe when we crave sugar or grains or whatever, then it's possibly a sign that we shouldn't eat that food.

(whereas when toddlers crave a certain food - and members with children will relate to this - then that toddler probably needs a boost of that vitamin/mineral).

Wish I could eat this way permanently. Wish I could do alot of things permanently.

So despite the 2004 colonoscopy showing no trace of villi damage due to cealiac disease, I KNOW I am sensitive to grains. Was it Tony? (in Melbourne) who said a couple of months ago, that one could still be allergic to grains & not have the villi damage in the digestive tract?

I believe many of us (including healthy) people are becoming sensitive to different foods because of the chemicals (on our crops) & the hormones/antibiotics (they feed our animals). Many years ago (like about 36 yrs ago I think) I read an article in one of our major newspapers about the fact that many people don't realise that have these sensitivities because they have been eating that way since birth.

It's only when you switch to all fresh, organic food that you realise how different you feel.



Still working on it all..
Melbourne, Australia
Hi Vicki,

I think what I said was some of us have a level of gluten intolerance that isn't coeliac. Prof De Meirleir has been reported as saying 45% of ME/CFS patients have the fructose malabsorption problem where wheat is a main culprit. (I'm one of 'em.)
Good point about eating a certain way for a life time...I think I've had this fructose problem, though without causing so much havoc, for a very long time, maybe my whole life.
I've basically been wheat free for over 3 years and am better for it. Time for you to get back on the wagon?...cheers...:)


Senior Member
Vicki, Tony,

Sounds like those of us with this sensitivity would be far better off to stay on the wagon. :)


This was in the Consults Blog of the nyTimes on Dec 21 09.

I thought it might be of interest as many of us have celiac or some degree of gluten intolerance.

Other recent articles were:

Ask the Experts:Celiac disease

Gluten-free for the holidays, and beyond

The Varied Symptoms of Celiac Disease

Dr. Sheila Crowe, a professor in the division of gastroenterology and hepatology in the department of medicine at the University of Virginia, recently joined the Consults blog to answer reader questions about celiac disease. Here, Dr. Crowe responds to reader questions about the many signs and symptoms of celiac disease.

Digestive Complaints, Anemia and Celiac Disease?

As a college student I experienced what seemed to be symptoms of celiac disease bloating, irritation and frequent loose stools. I also experienced vomiting, although this may have been from the pain associated with the abdominal cramps I would sometimes experience after eating. These symptoms persisted throughout my college years, but ever since I graduated (three years now) I have been symptom free. I have also had mild anemia since my early teens. Is it possible for symptoms of celiac to manifest in this way and then disappear (I have not changed my diet at all since this time)?

Dr. Crowe responds:

Celiac disease can present in many different ways, including the symptoms you describe during your college years, although vomiting is not common in adults with celiac disease. Anemia is a common problem in celiac disease, usually due to poor absorption of iron by the damaged intestine.

However, medical conditions other than celiac disease are more likely to have been responsible for your problems during college. Lots of students, particularly women, suffer from a very common form of a group of digestive disorders known as functional gastrointestinal disorders, particularly one type known as irritable bowel syndrome, or I.B.S. These digestive disorders can be made worse by stress and often get worse during the college years.

Anemia can also be caused by many different medical problems. It would be interesting to know if your anemia also improved in addition to the digestive symptoms. Sometimes problems of celiac disease first show up when kids go to college, since the diet on campuses tends to be higher in gluten than a traditional meat and potatoes diet. However, you have not changed your diet, making it less likely your celiac disease became less active due to a changed, lower-gluten diet.

If you want to be certain that you do not have celiac disease even though you feel better at present, my suggestion would be to get tested with a special blood test called the tissue transglutaminase antibody, or T.T.G. IgA, test. If that test result is normal, then theres a very high chance you dont have celiac disease and you can keep eating a normal diet. And thats good news as we enter the holiday season! If the antibody is abnormal, then your doctor will want you to go on for further testing for celiac disease.

(Please note: Ill be discussing diagnostic tests for celiac disease in more depth in a subsequent Consults post; check back for updates.)

Low White Blood Cell Counts, Lactose Intolerance and Celiac Disease?

Can celiac disease cause you to have a low white blood cell count? I have had stomach problems for about eight years and was just diagnosed with celiac disease two months ago and was advised to stay off of casein too. I have been strictly sticking to the gluten-free, dairy-free diet. One year ago they sent me to a hematologist because my white blood cell count was 3.5. It has now dropped to 3.0. It is my NYs that are low. I was just wondering if the celiac was causing my white blood cell count to be low. The hematologist did not know much about celiac. Thank you!
Lesley Puhr

Dr. Crowe responds:

Celiac disease does not commonly cause a low white blood count. However, there are some other immune diseases that can be associated with celiac disease, such as lupus, that can result in a low white blood cell level. Other autoimmune disorders can also lead to low blood cell counts, including low platelets, red blood cells or white blood cells. I would imagine the hematologist has checked you for these conditions.

As an aside, Im curious how your celiac disease was diagnosed. It is not typical for someone with celiac disease to also be placed on a casein-free diet, as milk proteins do not cause problems in celiac disease. Dairy products are an excellent source of calcium, so you may want to make sure you arent placing yourself at risk of nutritional problems by being dairy-free without good reason. Lactose intolerance is one reason to avoid lactose-containing dairy foods, but even then, most lactose intolerant patients with celiac disease can consume yogurt and other fermented dairy products as well as most hard cheeses. In addition, lactase treated milk can be consumed. It may be you dont have celiac disease, and perhaps another condition is related to the low white blood cell level.

Ovarian Cysts, Urinary Tract Infections and Celiac Disease?

Is there any relationship between ovarian cysts, recurrent urinary tract infections and celiac disease? I was diagnosed several months ago and am no longer plagued by U.T.I.s as I once was. I am hoping that the ovarian cysts I have will shrink from a gluten-free diet.

Dr. Crowe responds:

Celiac disease is associated with many different conditions, but ovarian cysts and urinary tract infections have not been specifically reported to be linked to the disease. All three of these disorders are common, so of course there is a good chance they can all occur in a given individual.

Regarding the urinary tract infections getting better on a gluten-free diet, this may be due to improved nutrition and associated better health as your intestine heals. I have never heard of a gluten-free diet helping ovarian cysts, but I would love to hear how it goes for you!

To learn more, visit The Times Health Guide: Celiac Disease and see Dr. Crowes other responses in:

* Gluten Free for the Holidays, and Beyond

Dr. Crowe will be responding to additional reader questions in subsequent Consults posts in the coming weeks. Check back for updates at


Senior Member
Austin, TX
Well, I'm weighing in by announcing I'm a Raw Foodie. I had been gluten - free almost 2 years (other than a 3 - month hiatus) without positive results. Had problems rotating foods. I know it might be considered a no-no here, but people, I'm full (as in, not hungry all the time!), fewer crashes, both mornings & afternoons. I used to be a Caveman Diet follower: I enjoyed very rare steak until I found I still had very, very low ferritin. Something's fundamentally wrong with my digestion, & I'm righting it, dammit, with superfoods my body has not seen the likes of before (and therefore, using, I assume, instead of sending leukocytes to): seaweed, maca, coconut (that's thanks to you, Miss Jody). Good luck, everyone. I also recently bought some special holy triple-blessed ginger kraut from the raw foodies (who were SOOO nice, even though I wore my patent-leather Danskos & carried a lovely leather purse). Peace,


Senior Member
I have been wheat free for a few months, then decided to go gluten free two weeks ago and cut out dairy too 100% for both. It was the result of reading Why do I STILL have Thyroid Symptoms - when my lab tests are normal? Datis Kharrazian DHSc DC MS.

He says that in some cases, the immune system mistakes the gluten molecule for thyroid molecules and so attacks and eventually destroys the thyroid - which is Hashimoto's Thyroiditis, which I have. I wonder if the process goes on with other organs etc and is the cause of all auto-immune conditions and is indded a problem for people with any chronic condition. He advises his patients to give up gluten for life and dairy too and he is having success.

It has not been too hard but the gluten free products in the shops are expensive and not that tasty so I am eating only a little of the bread products. I am used to reading labels so that part is ok.

I have seen a considerable improvement in these two weeks. My bowels are working much better, my energy levels have gone up and I am no longer needing to sleep through the day - in fact I am staying out of bed mostly. I have noticed that I am now sweating underarm and my breast tenderness has gone. I am actually a lot better.

The big test will come in three weeks time when I plan to go away for a week and will have to exist on snacks mainly of nuts, seeds bananas and meat.

I have tried gluten free before but because I am not celiac, which showed in the test for it, I did not think it had to be 100% but it seems to make a huge difference.

It is taking some adjusting to to know I can never eat these products again - no more shop pizza :( but if it will stop the destruction of my thyroid then it is worth it and if it improves fatigue and general health for anyone then I am sure that it is worth a trial to see.


Senior Member
Olympia, wa
I've been gluten free for 5 years now. My ND diagnosed me with Celiac but didn't do tests. Now I'm not so sure if I've got celiac or if it's just a sensitivity issue from the CFS. I went into almost complete remission for 2 years when I quit gluten. I've subsequently nixed casein as well, much to the benefit of my mental state.

Regardless of the DX, the difference for me has been huge. Even the teensiest traces of gluten make me sick as a dog, so regardless of why, well, I'm just not eating the stuff.

I've also quit buying most available GF breads and such, mostly because they taste nasty, IMO. When I have a good day I generally make up a few loaves of my own and freeze them.