Gluten Free Guerrillas

how many people have been misdiagnosed with chronic fatigue syndrome by doctors instead of coeliac disease?

and have went on a gluten free diet anyway and found symptoms improved?

my doctors are suggesting chronic fatigue syndrome, but i just dont think it is at all. My coeliac antibody blood test came back negative so i they have just dismissed it completely. I am just waiting on the biopsies now coming back but again they might come back negative. Would be very interested in hearing from anyone in this situation thanks

8 Replies

No, but I was told I had IBS.. and Doctors wondered at my persistent low Hb only to say oh well you're female anaemia happens ..



My Doctor has hinted at CFS many times when I complain of aches, low vitamin D and tiredness. The problem is Drs don't always understand auto-immune well. And like IBS CFS is a 'catch all' diagnosis often used when other options are ruled out. Which doesn't always give patients faith in it being an accurate diagnosis. You could ask your doctor for the IgG and IgA blood test as some people are deficient in the usual one for coeliac diagnosis.


ive been gluten free for 4 weeks and dont want to go back to gluten, they should have done all the antibody tests when i was in hospital eating gluten


i think they only did IGE and IGA?


For some while now, I have been looking into the problem of negative blood tests etc but amazing recovery of people after a GF DF diet. One of the things that has come up on several occassions is a mercury intoxication due to fillings, vaccinations and food. It would seem that the gluten and dairy proteins bind with the mercury in the body to create a toxin which creates all the symptoms. It would also explain why some people have a zero tolerance level to all sorts of grains including, corn and soya as the molecular structure of their proteins is similar to that of gluten.

The problem is that it is difficult to test for mercury poisoning as you need to do a chelation to "unstick it" from the body's cells, and not many places do it, and not on the NHS. Britain do not yet recognise chronic mercury poisoning unlike Germany and Switzerland, and Belgium I think. It would seem that very many people would be poisoned and it would cost far too much. Although in my opinion they'd save money in the long run.

The other thing that makes me think that mercury is the problem is that a mother passes her mercury load onto her child in uterus. Wo in turn accumulates mercury from vaccinations and food. That would explain why whole families are affected and younger and younger.

Anyway food for thought. I would love to hear what people have to say on this subject.


that is extremely interesting karen!!!!!!!!!!! i have actually myself too researched mercury poisoning a few yrs ago as i have mercury fillings one in particular that goes onto the gum!!!!! as part of the tooth was taken away, i have for years asked dentists if this is ok? and they look like they dont want to talk about it. I have read all the effects of mercury poisoning and myself i would like to be tested but as you say if i went to my gp and asked i think hed laugh at me and look like what planet are you on, even though im right. Do you know anywhere in the UK that does it as i would really like to get tested!!!!!!!!????? iwhat is the actual test you would ask for?? ive read that when u chew eat something or drink its sets off the mercury into your system. i had my fillings only 3 of them, since i was 16 and now im 31 with all these problems i cant walk :( have extreme lethargy, dizziness, am off balance, itchy rashes, excess hair, memory fog, confusion, muscle spasms, shaking, tremors, stomach rumbling. muscle weakness, intolerance to heat, palpitations, my gums are really pale with white patches on them. The doctors have done tests and they cannot give me an explanation, they just mumbled something about CFS. Before all this happened i was very stressed, as my boyfriends dad died and we had so much worry! :( and then i got 4 viral infections in a row in the space of 2 months. So im left now not knowing what to do. Will i ever feel normal again?! :(


Sounds like my story. I have CD, IBS, CFS, reactional hypoglycemia. I don't believe its possible to have so many untreatable and unexplainable things. There has to be a cause and I will fight til I find it!

There is one place in the UK. You have to do a chelation test. Basically you are given a product that unsticks the mercury and then your urine is taken and sent off to Germany. Results two weeks later. The only place that is certified by the International Board of Clinical Metal Toxicity

I actually live in France and am going to do the test in July with a doctor in Switzerland. Its not cheap but I've tried so many things and I genuinely believe this is the root cause. There is a great book here written by a french women who talks about her story and that of her family's. I cried when I read the book because it was exactly my story. Today she is absolutely well as are her children - after many many years of unexplained problems.

I'm doing a blog too:

Please please let me know if you go through with it and what happens....


i wish i had money to get these tests done :( thank you karen very interesting. what are your symptoms karen may i asK? I think i have all of that aswell!! CFS, IBS, reactional hyperglycemia. my life is ruined. how do you cope??

i am in hospital just now and i cannot get an answer!! ive been in for 5 weeks, i really worry about my health!? i have a walking frame just now and no one seems to think its abnormal!!?? i keep also getting these shaking attacks, dizzy which feel like hypoglycemia before and after eating but my blood sugars are always normal, do you get them? i cant understand it.?? how did u get diagnosed with reactive hypoglycemia? and do you work now? i cannot. are you going to get these tests??!! i am very interested to hear how you get on. x


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