Even on the relatively poor reproduction here you can see the white plaques typical of MS lesions on the left and their absence on the right is equally notable. Click to enlarge. That's as far as my Spanish (which is non existent) will take me with the paper.
Of course this may just be a complete fluke, MS does do remission. But I doubt it and anyone with MS or related problems can take note and realise that it is not necessarily a one way ticket, remission is possible, six years is a good start and eating gluten is probably your key to progression of the disease. It becomes debatable whether eating low carbohydrate is needed but, if nothing else, going low carb makes the avoidance of gluten about a million times easier than deciding whether to trust the labelling for complete freedom from gluten. No gluten in a home cooked steak.
For those who do have MS but don't have coeliac disease, I stumbled on this paper as a link related to the Spanish paper. It is almost impossible to describe how utterly, totally and completely cr*p the antibody tests for coelaic disease are. In the UK you will not get an intestinal biopsy unless you are antibody positive. You can have flat intestinal villi with a negative antibody titre. You can also have flat villi in large areas of your gut and the guy driving the endoscope might just biopsy the last six minute patches of normal mucosa you had left. Leaving you with no normal gut lining, a negative diagnosis and a label of over vivid imagination about gut pain. Conclusion: A deficiency of Prozac. The hydrogen breath test seems a lot better than serology, if you can get one done.
There is no need to believe you are coeliac negative. If you have MS it seems very unlikely you would be coeliac negative. Risking MS progression for toast is a pretty amazing trade off! There are no adverse reactions to a gluten free diet. Oh, once you are through the withdrawal syndrome that is, about 4-6 weeks.
Peter
25 comments:
I think you mean "avoiding gluten" in the third paragraph, not:" remission is possible, six years is a good start and eating gluten is probably your key to progression."
Thanks for the article!
Hi
NICE have just published short clinical guidelines on the recognition and diagnosis of coeliac disease. I am sure you will be pleased to note that the care pathway now includes the referral to a gastroenterologist of those with negative tests but persisting coeliac symptoms. The guideline development group seems to be keenly aware of the pitfalls of overreliance on negative blood tests. Coeliac UK is petitioning the government to enforce these with GPs etc, by setting a contractual duty to diagnose, and targets, rather than leave them with "guidance". The new guidelines can be found at - http://guidance.nice.org.uk/CG86.
Thank you for addressing this in your blog. Gluten is such a risky protein for so many people who are simply unaware of the danger. For those of us with MS in the immediate family, it's especially important.
I truly believe a world without wheat would be a happier, healthier one.
Thanks Bill, I've edited to make it clearer what I mean.
Hi Ali, Thanks for the link, I particularly like box B. I guess Coeliac UK have had some input in to this? I'll put a small post up so people who don't read comments can pick up the pdf before they go to their GP. At least they will know the guidelines before they negotiate.
Obviously there are huge financial implications for a positive diagnosis for people who want to eat "normally". In some ways I'm glad that my daughter never got a diagnosis as the benefits she has accrued from low carbohydrate gluten free eating are probably greater than if she had become financially dependent on gluten free prescription foods!
Lissa, good luck! Couldn't resist putting the Spanish paper up once I'd seen the MRIs.
Peter
"setting a contractual duty to diagnose"
Wow, as much as I'd like to see improvement in the treatment of hypothyroidism and gluten sensitivity in both the US and the UK, that phrase sort of freaked the inner-Libertarian in me. What a slippery slope when medicine and health care is dictated by contracts instead of the doctor-patient relationship.
Peter, for the most part, I'm employing the same strategy as you - avoiding the trap of "eating normally" with a cupboards full of specialized GF foods. Most of them are highly processed and many have huge ingredient lists of food chemistry labs.
Five years of low carb eating with an increasing emphasis on Real Food prior to testing positive for gluten (with Enterolab's tests) set me up well for ditching the last bit of grains in my diet. As I dive deeper into the GF world, I'm amazed at the lengths (& expense) people will go to to mimic wheat foods (which as you know, are foods that contribute little to nutrition needs and a lot to the waistline, too).
I do make a few "normal-type" things for my son, like coconut flour pancakes and muffins (from scratch, not GF mixes - and with a lot of eggs) but only on occasion. I want him to grow up with a way of eating that isn't dependent on "empty" starchy foods all the time.
Anna, I'd concur with the unease about legal enforcement of guidelines, most guidelines are frankly wrong, or based on wrong premisses. There is a rumour in the UK that "action likely to cause harm" in animal welfare law means that vets might get prosecuted for failing to educated owners of obese dogs out of overfeeding them. Except the problem is from feeding a carnivore on carbohydrate based cr*p in a bag. I would take issue about the welfare of any hyperinsulinaemic labrador put on a low fat, low calorie diet for the rest of it's life, just reading what this does to humans in Gary Taubes' book...
Peter
PS Yes, Coeliac UK did have input. They were a registered stakeholder. And the other parent/carer representative sitting with me was from Coeliac UK - their lovely dietician, also a late-diagnosed coeliac.
Ali
Good on you Ali, are you doing OK neuro wise? Obviously your brain is doing pretty well!
Peter
Anna
Thank you for mentioning Enterolab. I didn't know it could be so easy to get tested. Do you still recommend the lab?
Hi Peter, it's really nice to read your writings again!
I have two friends (30 and 33 years) who has been diagnosed with multiple sclerosis. I noticed that there seems to be somekind of connection between vitamin D defiency and the progression of the disease. This article about vitamin D's ability to maintain the integrity of the intestinal mucosal barrier was very interesting:
http://ajpgi.physiology.org/cgi/content/abstract/294/1/G208
Could multiple sclerosis,coeliac and type 1 diabetes and vitamin D be connected through intestine function?
I am a Spanish medical student and I am SO excited about this study!
I have MS with very mild symptoms. 8 years after my first and last relapse (although I've had lesions on MRI scan for much much longer), I have found that symptoms disappear whenever:
a) I have 2 hours of full body exposure at midday, in summer at mediterranean latitudes.
b) I am on vitamin D3 megadosis (6000-8000 UI/day).
I have been gluten free for years.
My professors think I hug trees and plan to treat acute myocardial infarctions with Bach flowers for suggesting things like DIET and vitamin D have are not voodoo. It's great to see there are spansih neurologists a bit more illustrated.
Hi Westie,
That is a VERY interesting abstract, especially if it transfers to humans. I'm not sure the gut is the sole source of auto immune probs, but it has to be the main one... There is a micro oxygenated zone in the large bowel adjacent to the mucosa where acinetobacter probably thrives. It could burn hydrogen from fibre successfully with just a little oxygen. After that mucosal integrity becomes the barrier between health and MS.
Hi Angela,
Good to hear the D seems to help. Getting to be a medical teacher generally takes a certain mindset. You noticed! But there really are some excellent medics out there, go and be one!
Peter
"I'm not sure the gut is the sole source of auto immune probs, but it has to be the main one..."
[Peter:] The gut is certainly the right place for autoimmune issues. Just think of all the lectins (not just gluten and WGA) present in a typical diet wreaking havoc on the intestinal tract causing degenerative disease.
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Nick,
I do recommend Enterolab. Be aware that their test is not the "recognized" way of diagnosing gluten sensitivity and celiac conditions (your doctor may have resrvations - I haven't even mentioned any of this to our HMO doctors because if "they don't do it, it isn't any good", though my out-of-network doctor didn't bat an eye).
For some reason, Dr. Fine (director and owner of Enterolab) has been sitting on his data and hasn't published it yet, so Enterolabs testing methods are open to criticism about lack of peer-review, etc. But for a variety of reasons I chose to go that route anyway for myself and my son. Some say nearly everyone who uses Enterolab tests positive, so they doubt the results. I guess that many clients who use Enterolab don't want to deal with their unhelpful doctors anymore, are relatives of celiacs, and/or would rather go the non-invasive route instead of mercurial blood test and intestional biopsy route, so the clients probably *are* stacked in favor of gluten positive results.
I suggest reviewing their site and googling around. Lots of discussion about Enterolab on gluten forums, pro and con. See what you think.
We did the entire panel for gluten, including the gene testing. The casein (milk) test was a free bonus with the full gluten panel. They hold test samples for 6 weeks, so later I ordered the soy, egg, and yeast panel and we were both positive for soy, too (I breathed a sigh of relief when the eggs were negative).
I really thought we would be able to be GF at home but not have to be so strict about it when we were away from home because whatever GI symptoms we had were so mild and weren't the reason for my hunch about gluten. I was wrong.
After being GF for a few months, we now sometimes have GI symptoms from small amounts of gluten exposure. My son has reacted with a pronounced stomach ache from likely gluten exposure at a restaurant or someone else's house (he avoids the obvious wheat foods, but isn't yet savvy to the hidden gluten. Twice he has gotten canker sores from eating red licorice candy (contains wheat flour).
I've had a couple of awful nights after dining out and not being careful about small amounts of gluten in sauces and even one piece of ever-so-lightly battered tempura shrimp at Japanese restaurants. Everyone else ate the same things without issue, so it wasn't food poisoning. Typically, I have a cast iron stomach and only get really awful GI illness from viruses.
My husband had his doubts at first, but not anymore. Of course, he contributed the HLA gene that predisposes to celiac (that my son has but I don't; I have two HLA genes that predispose to gluten sensitivity), but my husband is choosing to ignore that when he dines away from home, though he does stay fairly LC.
Peter,
Thanks for putting this on..i've been trying to access this atricle on pubmed but havn't had much luck..
i was diagnosed with ms last summer after having gut problems for many years..my doctor had given me the blood test for coeliacs in 2007 but as i had cut gluten out beforehand it was a flase negative...ive now been gluten free and high fat/protein for over a year (SCD diet) with no further symptoms after being all singing all dancing ms in 2008..
i think what this atricle shows is the obvious connection between gluten consumption and neurological illness!...
Hi Weetabix,
Thanks. Information like yours is something which makes the blogging worth while, in addition to the fact it's hard to stop!
Oddly enough of the people I've met or come across, MS seems to be one of the more responsive conditions. Which is good but, to me, a bit surprising. When you think of the current medical approach to MS, halting in a few weeks seems a bit unlikely. But it certainly happens. I'll forward your comment to my friend in the Caymans. Should help her stay on track, as if the MS wasn't enough!
Peter
BTW your blog id reminder me that my routine breakfast for years was 2 weetabix, banana and raisins, skim milk, tea with skim milk, toast (wholemeal), marmalade at the w/e or peanut butter weekdays. I think I was very, very lucky in many ways!
yes i thought id add some irony to my username..bit of humour in there makes the days easier!..
i was actually put on a low carb diet for the first time in australia in 2005 to help with eczema which i was suffering from ..much better health system across there ..saw a gp a dietician and a phychiatrist in a matter of an hour!..i didnt need the phychiatrist if i remember and we had a chat about backpacking..
it didnt eradicate either the eczema or gastro problems but it helped massively..i wish i had somehow managed to stick to it but i didnt know much about nutrition at the time..and somehow ended up dabelling in all the gluten free crap in the supermarket instead by the time i was diagnosed with ms!..shame really as the only reason i was eating all the gluten free junk was that i was worried about eating too fatty a diet...ironic really!...
btw...from looking sites on ms on the internet everyone and their dog seems to be on either a low fat diet (the swank diet) or a best bet diet..basically taking everything out!..including gluten..but from what i understand from Hadjivassiliou's atricles in certain instances it doesnt matter whether you take out 99.5% of gluten from your diet (eating a standard gluten free diet!)...you could still be suceptable to an immune response to the remaining 0.5% remaining.
btw have you got a copy of this atricle handy that i could read/translate?..ive tried to acces it but been told that i need to go to the british lib in london due to copyright issues with it.
also i live in aberdeen. its the capitol in the world for ms. There is no where else in the world with a higher instance of ms!.
Email me via the hotmail account on my profile and I can send you the pdf.
Peter
thanks peter,
i just saw the most interesting article on the local news up here. a teenage girl is going to live in the atric with the inuit tribes to sample how they live: problem: she is vegan: reality: inuit live on seal fat and fish as their main source of sustinance: solution: bring lots of pasta and refined products from the local 'health food' shop.
no wonder we have such a high proportion of ms suferers up here..mostly female!.
Hi Peter,
I've been reading your blog after being pointed in this direction by Weetabix.
In 2000, I was diagnosed with RRMS and started Rebif (beta-interferon 1a) pretty soon afterwards.
It worked well, but thanks to an enormous amount of familial stress from 02/05 I had a bad relapse in 05 and could only walk a few metres.
I got so sick and tired of being sick and tired by then, that I went on a pretty radical (mad) diet. Only natural foods (rawfooding) but with fish as most rawfooders are vegans and I'm quite definitely not.
After a few months, I felt great, but miserable inside and ditched the rawfood diet and just went gluten-free and modified my diet to Paleo.
I was pretty normal up until this year, when I had run out of Rebif after moving to Spain. After a bad out-of-the-blue relapse, I got back on it again and started LDN (low dose naltrexone) for symptom relief.
I moved to northern Spain for the sunlight (there is more, even in Galicia!) and a less stressed life.
If I eat bread for more than two days, my neuropathic pain is dreadful. It's a shame as the bread is amazing, but well, good health is better.
I would also say that I think my MS was in remission for three years thanks to remaining gluten-free, but that MS is a bit more idiosyncratic than most autoimmune conditions. I need to take Rebif. It works.
I feel much better without gluten in my diet. I have the energy levels of a normal person.
I also have metabolic syndrome. I'm a statin sceptic. An Ornish sceptic (tried it in 97 and it made everything worse) and am quite happy with a high fat diet. It's tough though. ALL the advice is to eat low-fat, with some Omega 3 fats, but stay away from sat fats as though they are poison.
My Spanish GP is encouraging. She's largely in agreement as she has a friend who has done well on a gluten-free/paleo diet.
I'm lucky to have a doctor who takes diet seriously.
Most UK MS professionals aren't interested, but as MS is complex, I can understand this.
Hi Norma,
I'm sorry I've been so long in reply commenting here but I'd got this idea that I'd done it. But no post visible or sent email so.... I think I might have spoken to Weetabix off blog about yourself and my brain misfiled it!
It is so good to find an encouraging GP! I've said in a number of places that I've always gotten on well with my GPs, but I rarely ask them for much! My last one was good enough to test me for HLA B27 (-ve) at my request. Threw in CRP and ESR too, both normal. Nice guy, well read.
It's a pity about the bread. I know what you mean about artisan bread, a bit like artisan beer... mmmmmmm!
I'm just a beginner with MS and I can see that it is a variable condition, so cure is never a word to use. And with RRMS then remission is always conditional on the remission continuing!
I have heard about all sorts of diets helping MS, even Ornish style, provided it is backed up by a bucketload of supplements, mostly aimed at metabolic syndrome. But this is to allow you to eat rice, why supplement when you can eat butter instead and have remission in weeks not months? And ultimately metabolic syndrome is either incurable (if it is bisphenyl A etc triggered) or only modifiable (depending on the fructose damage to your liver), so side stepping it is my preferred approach. No miracle cures!
Just getting MS remission is enough.
Hope you continue to do well. The naltrexone is interesting stuff!
Peter
Hi Peter,
thanks for your comments.
Just to add an observation - we have been given a nice ball of preserved hard lard- much like Lardo de Colonnata.
It was our neighbours metanza (pig killing weekend) and we made black pudding with 2 litres of blood and now have enough lard to keep us going for a while.
MS is rare here. My neurologist only has 10 patients and most are doing well.
Could it be the sunlight or the lard? Or a combination?
Who knows.
As for the metabolic syndrome, I try to be virtuous and eat as low-carb as possible. It's quite easy, really.
I just remember the 9 months of misery and indigestion on a fat-free diet of brown rice and pulses and then go and eat a handful of almonds.
I think that for some people, with plenty of insulin sensitivity, a low-fat, high starch diet may well work.
I just wish that the medical profession would recognise that for those people who are insulin resistant, that a low-carb, high fat diet is perfect.
The same paradox occurs with the MS diets! We just have to find our own path and stick to it.
Peter,
Thought i would let you know that i have an appointment with Dr Hadjavasillou (referenced in this paper)on the
24th February 2010 at the royaal hallamshire hospital to discuss my case (RRMS). It should be particularly interesting as
when i was diagnosed in Aberdeen Royal Infirmary in the summer of 2008 I told them
i thought it must be related to coeliac disease as I had coeliac symptoms in the months
before diagnosis but had no firm diagnosis. They told me there was no link. So far 18 months on
and a strict gluten free diet no gut symtoms, no skin symptoms and now i can jog full strength
for at least two miles and walk much further. In many ways (apart from some disability..ie I can not run
a marathon..) I have not been this well in many years..and certainly not this heavy!..12 stone. (far from obese!)
and I found this paper of a patient with coeliac disease mimicing amyotrophic lateral sclerosis
from Oxford http://www.ncbi.nlm.nih.gov/pubmed/17914346 and another from the US http://www.ncbi.nlm.nih.gov/pubmed/19910450
Bizarre how eating a food stuff which basically encompassed my diet some years ago may have been
making me incredibly ill.
David.
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