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NCGS does anyone know of any medical documentation regarding how damaging this is

tmoxon
tmoxon

Hi I am looking on the web for any medical evidence (not opinion) that states that NCGS is as damaging as CD, just wondering whether if anyone has an interest in NCGS they have any links to the information.

Thanks in advance for any help provided

21 Replies
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This is a fairly comprehensive article. Apparently NCGS has been known about for several years, but seems to have been dismissed, a bit like coeliac disease used to be. There are several papers referenced at the end which may give you more information. Hope it's useful.

ncbi.nlm.nih.gov/pmc/articl...

I have also come across some interesting research which suggests that NCGS may actually be a FODMAPS problem.

celiacdisease.about.com/b/2...

urbangirl
urbangirl in reply to Penel

Interesting articles Penel thank you. I am not sure about the FODMAPS problem related to the second article because I cut out gluten first. My health improved considerably within a few weeks of going gluten free. During this process I identified other problem food such as glucose syrup and products containing hydroxypropyl methylcellulose. I did the FODMAPS several months later which identified dodgy food for me. As I was only eating fresh food and the culprits were a mixture of fruit and vegetables then I think this may suggest some possibility I have IBS. As with most situations there are variables involved and I think this is a complex issue that needs a lot more research which I would so welcome.

I wish you success on this one.

The very term NCGS sounds, to the uninitiated, less serious, but the consequences for me are devastating - I have bipolar disorder and gluten or anything which mimics it leaves me paranoid and delusional. It sometimes takes hospitalisation and months of higher doses of medication to recover. I have even had 2 bipolar medication generic brands which I reacted to after only one tablet. (Both brands contained colloidal silica.)

The gluten summit that many of us listened to last November brought home to us that what we know about gluten "sensitivity" is just the tip of the iceberg. As one of the speakers pointed out, we have no pain receptors in the brain, nothing to warn us of damage until we are severely brain-impaired.

I am currently very well on my "near enough paleo" diet. My psychiatrist now (after seeing me for 16 years) describes me as "in remission" to my GP. My bipolar friends, however, think I am the exception in being intolerant of gluten, because NCGS is not established in evidence-based medicine.

tmoxon
tmoxon in reply to chlorophyle

Hi So sorry to hear about your health issues, you are obviously very knowledgeable but just wanted to ask whether you have had your Vitamin B12 checked and whether the level is a good level ( above 500) as i have read that this can also cause these issues

Glad to hear that you are feeling better on the paleo diet, I keep thinking of trying this diet as I still keep having issues despite following a GF and headaches are my worst symptom, stopping drinking milk has made me feel better.

Thanks again for your help, hope your health continues to improve on the diet

Just thought I'd add, the clinical research is being initiated. Here's some information on the work of one of the gluten summit speakers.

Professor Marios Hadjivassiliou

marios.hadjivassiliou@sth.nhs.uk

Neuro-inflammation Research Theme Lead

Consultant Neurologist: Professor Marios Hadjivassiliou

Theme 2: Neuro-inflammation

Relevance of the research portfolio to the health of patients and the public

Research on the neurological manifestations of gluten sensitivity and the ataxias has resulted in the identification of new disease entities (gluten ataxia, gluten neuropathy, primary autoimmune cerebellar ataxia). Thanks to research on the treatment of gluten ataxia and gluten neuropathy it was possible to demonstrate improvement following the introduction of gluten free diet. Patients with these conditions if untreated, follow a progressive course resulting in significant disability. The majority of patients with ataxia, if untreated will end up wheelchair bound. Gluten ataxia accounts for 21% of all ataxias and over 40% of idiopathic sporadic ataxias. With the prevalence of ataxia being about 10 per 100,000 in the UK, a substantial number of patients with ataxia will benefit from such new treatments.

Multiple sclerosis is the most common cause of disability in young adults in the UK.

Current research projects in this field aim to improve our understanding of its pathophysiology and help with its management.

(You can find this information on this link:

sheffieldclinicalresearch.o... )

Penel
Penel in reply to chlorophyle

Good to know that research is being done. Thanks for the link.

Hi,

I believe that people with Hashimoto's thyroid disease also benefit from being gluten-free, so I guess you could call this a type of NCGS. It's an autoimmune reaction that doesn't affect the guts.

Sean Croxton's Second Series - the thyroid sessions has had a lot about this recently.

Also the following link on Aristo Vojdani might be useful to you: glutensensitivity.net/Vojda...

Besides being a researcher he is the chief scientific advisor to Cyrex labs.

Thank you very much for all of the replies, I will have a look at the information you have sent.

I find all these links very interesting.

I have experienced chronic back pain and sciatica, costochondritis, frozen shoulder, painful elbow and wrist joints, hypothyroidism, angry red rashes on hands and scalp in addition to the bipolar disorder and insomnia. It took 2 years of being gluten free before I got rid of the back problems and this was a result I was not expecting after 30 years of problems. My back is now very tolerant of poor posture ( from too much computer use).My frozen shoulder (triggered by legumes and white potatoes) cleared up in 7 days of a strict paleo diet. I have no symptoms of hypothyroidism and take no medication, as I couldn't tolerate the levothyroxine. ( It could have been the fillers in the tablets that I didn't tolerate.) I have no health issues at all.

CUK's latest magazine reports the latest research as identifying wheat allergy being the problem and not gluten, so it might help to look in that direction.

Thanks Jacks I will take a look at the magazine

I do not think there is much good research on NCGS. At the moment, all wheat-related disorders are lumped under the same label. FODMAP sensitivity has nothing to do with gluten, but it is often mixed up in the studies. Then there's WGA and wheat allergy... no sensible conclusions can be made when studies don't separate out those groups of patients.

Fasano in Italy is the only person I've come across looking into NCGS properly. In the Gluten Summit, he said that his NCGS patients often lose weight when they come off gluten (as opposed to celiac patients who tend to put on weight as the villae heal). He also said that his NCGS patients tend to accumulate nutritional deficiencies like B12/folate and iron as a result of the condition.

Personally, I think "true" NCGS (where the immune system is reacting to gluten) is an inflammatory condition in the digestive system, and its the inflammation that causes most of the problems. Even though I don't show the classic inflammatory markers, my iron levels are wonky and my vitamin D level is in my boots, both of which are signs of inflammation. I also lost weight when I came off gluten (a little too much in fact) and have/had various nutritional deficiencies, just like Fasano's NCGS patients.

How that inflammation shows up as a symptom will depend on where your physical weaknesses are. Most of my symptoms have come from nutritional deficiency and some from my immune system going bonkers. If the condition isn't diagnosed then the ongoing chronic inflammation sets the scene for more serious problems to develop.

While NCGS is not good news, I do not believe it is as serious as celiac disease. After all, your body isn't attacking itself. Of course, if the NCGS then leads to a more serious condition, such as gluten ataxia or thyroid disease (which are also autoimmune) then those conditions are also extremely serious and are often harder to treat.

urbangirl
urbangirl in reply to poing

I think you are spot on Poing. It is an extremely confusing condition in my opinion. However, I did read somewhere (can't remember where) that having NCGS might be a precursor to coeliac. Also it could be coeliac but the tests are negative. Or it could be NCGS. Whatever it is I don't think I know much about this condition at all (I know more about coeliac) most of what I know is from here and links to websites. I don't know what the symptoms of inflammation are. I am overwhelmed with stuff I find quite difficult to absorb and get quite paranoid and distracted about associated conditions as I seem to fit particular profiles. Talking to my GP doesn't really help, its like the problem is minimised besides I manage this condition myself and find this site so helpful for advice. I think I have nutritional deficiencies or thyroid problems because of what I have read. My GP has screened for thyroid but not for nutritional deficiencies. I get confused with all the different tests are for which condition. There are lots of things that I am learning about still. For example, I only recently got it together to ask my husband to clear up the crumbs he leaves from bread as I realised it is probable that when I was clearing the mess up I was in contact with gluten. Sometimes I was having mild symptoms, I couldn't understand why and this may have been the cause. I avoid gluten, wheat and other food and feel much much better for this, yet I still have some problems with my muscles and weight which remain unexplainable and the doctors don't seem interested.

Hi Poing

Thank you for your post, I was also listening to the Gluten Summit over the weekend, and listened to the same episode. I think that in the next 10 years they will ( hopefully) know a lot more and more research will be done.

I have found this website which advises that Dr Rostami will see patients who cannot get diagnosed with NCGS, he is apparently based in Luton trulyglutenfree.co.uk/2013/...

Here is a link to the BMJ about one of his patients bmj.com/content/345/bmj.e79...

poing
poing in reply to tmoxon

I haven't seen my medical notes, but hope that I've already got an official diagnosis of NCGS.

I did a gluten challenge while under the care of a gastro. I came up negative for celiac disease but afterwards, he told me to continue to avoid eating gluten... I think that's probably as good as it gets!

No definitive clinical research yet available for proving that many chronic illnesses such as lupus, schizophrenia, bipolar disorder, and Alzheimer's are caused by gut permeability but time will tell...

Here's an interesting illustration of how it possibly works:

wellness-punks.com/videos/g...

I definitely get damage to the gut. If I have damaged my gut I become unable to tolerate lactose for 4-6weeks with a main symptom of paranoia.

Penel
Penel in reply to chlorophyle

This paper from Fasano gives a really interesting account of the current state of research on gut permeability and zonulin. He is linking gut permeability with several major disorders, including lupus, type 1 diabetes, RA, ankylosing spondylitis, schizophrenia, and various cancers. The list is in on page 7 of the article.

ncbi.nlm.nih.gov/pmc/articl...

chlorophyle
chlorophyle in reply to Penel

An excellent find. I followed the link and was able to download the PDF.

NCGS has affected my body so much my gastroenterologist has put on my notes that I am NCGS - which proves that some doctors are accepting it.

tmoxon
tmoxon in reply to Jessiepup

Hi Jessiepup

thanks for your comment, the reason i asked the question was because my daughter was tested for CD and when the tests came back negative the gastro never even contemplated that her symptoms could be caused by gluten. My daughter has almost identical symptoms to myself ( I have CD ) most of which are the more neurological ones, yet she was diagnosed with IBS despite just having slight bowel issues

Jessiepup
Jessiepup in reply to tmoxon

My son is also negative for CD but is very intolerant to gluten. I have just had test done on my other son as he also has health issues (no result yet)

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