Hi I have been strictly GF for almost 5 years and haven’t felt great since starting the diet. I have given up dairy which made me feel slightly better but have still be plagued by horrible headaches, they are similar to being hungover or having your head filling up with cement.
During the last 3 weeks I have tried to find out what is triggering the headaches and alcohol seems to be one cause, one glass of white 3 weeks ago resulted in headache, last week a glass of red and this week I tried cider and again it resulted in a headache. Yesterday I made gravy with a Knorr beef stock which is supposed to be GF today I have another headache, I think this is with the stock cube having maltodextrin as an ingredient.
I am just wondering whether anyone else has these issues and whether there is any alternative treatment for them, I am wondering whether acupuncture might help but don’t want to waste money if it’s not going to be of any use.
I have been prescribed tablets to take called Topiramate that will prevent headaches but haven’t taken them as I am a bit reluctant to put myself on daily medication as I have always thought that the
headaches were connected to foods and wanted to get to the bottom of why I get them.
I am still experimenting to find other foods which are causing me issues, I really miss cheese, although not a big drinker, I enjoy a glass of wine and with Christmas coming up I can’t say I am looking forward to no sherry trifle or wine on the big day.
If anyone can help it would be appreciated
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tmoxon
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Hi. I am afraid I can't help other than to say I am in exactly the same boat as you. I was diagnosed Coeliac 3 years ago and am very strict about gluten and cc. Quite near the beginning of my diagnosis I believed there was 'something else' so I thought it was possibly a lactose intolerance. I have had lacto free milk since then and I have soya cream and yoghurt. There is very little lactose in hard cheese so I have continued to eat it. However, I still think there is something else so for the last 6 days I have been following an elimination diet. I have been limiting my intake to fruit, veg, chicken, salmon and brown rice. I really don't know what I am hoping to find out but felt I had to try something. Sorry I can't help but I feel your pain!!
Thank you for your response and for feeling my pain, although I wouldn't wish this on anyone it is nice to know that there is someone who understands, I think i am feeling a bit sorry for myself at the moment even though to be honest I am starting to find out what is causing the issues. I think i have suspected alcohol as being the culprit of my headaches before but then have gone on holiday where i have had wine every night and not had any ill effects so it just becomes extremely confusing.
Cheese is my next experiment, I need to start to feel better before i try it and the headaches can go on for days. I have tended to eat it with GF pizza or with spag bol and almost always with a glass of red, so i am just going to have the cheese at the weekend and see if I get a reaction.
Good luck with your elimination diet, I hope you find out what is causing your issues and they are things that you can remove from your diet easily, thanks again for responding
It may not be the lactose in milk that is giving you problems but the protein, casein, which it very similar in structure to gluten. I have CD and I react to raw milk very quickly, 10 minutes or so, and very dramatically. Boiling milk changes the protein and I can safely eat it. Also other processes can make it safe for me, fermentation as in yoghurt (but only in good quality ones without added milk), cheese or even just boiled to make a cheese sauce or cup of cocoa. I never drink coffee with milk in bars or restaurants as you can never be sure that the milk has been boiled, been caught out by that one.
Good luck with the elimination diet but be careful you don't end up eating brown rice and berries for the rest of your life.
Hi Tomoxon, well poor you, now I'd have a bood test as deficiencies can be a cause of head aches and maybe certain drinks/foods trigger them, the 3 that I know of are calcium, magnesium and vitamin D deficiency.
It's also interesting what you say about maltodextrin as according to the EFSA tests showed if it was from wheat it would have up to 1.4ppm. But worth bearing in mind is that lots of people have a reaction to artificial sugars so it's not just coeliac. In reality consuming artificial sugars is probably like us injecting sugar LOL
I think that you're 100% right to want to find the cause of the headaches rather than take pain killers, very sensible.
HI Jerry I hope you are well. Thank you for your response.
Two weeks ago I felt so tired and run down I rang up my gp, I had been out shopping and tripped over my own feet and generally felt awful so I had some blood tests done, Vit D, Iron, Cortisol and thyroid, all came back as negative no action with the iron being at 50 ( normally around 25) and vit D 71 ( previously this has been around 40) I was prescribed ADCAL when the results were 43. I will look at getting some over the counter magnesium to see if this helps as I have had episodes where i get bad cramps and I think magnesium can help with those.
Yes the tablets - Topamax that i have been prescribed on two occasions now (I haven't taken them) sound scary and would mean I would be on medication every day.
I think I need to work out whether the headaches are anything to do with coeliac ( the maltodextrin made me thing it was ) or whether they are a totally different thing and the coeliac disease is clouding the problem and then decide whether to control them via medication or restrict my diet to avoid them.
I have just joined the migraine healthunlocked and you get a message advising that you can speak to someone from the charity so I will give them a call to see if they can shed any light on things for me.
You mention low magnesium which can be a cause of headaches (and other things). Over-farming means our soils are depleted. Having any digestive problem increases the likelihood of having a deficiency. In addition to considering supplementation, eat a diet high in magnesium rich food. You'll know if you over do it - excess will give you 'runs'! Also try topical magnesium sulfate for the cramps - that's Epsom Salts in a bath. As it's absorbed through the skin it's ideal for us.
Thanks Jacks, I was given two lots of epsom salts and havent used them, you have just reminded me that i have them, I am going to try them tonight. As far as I know I haven't been deficient in magnesium just zinc and vit D and also my vit b12 was low, thanks again
Unfortunately it seems to be really common for coeliac to have problems with other foods or food additives. I don't know if acupuncture would help with the headaches, it would be interesting to know.
Hopefully you can carry on experimenting with food and keep a food diary to see if you can identify triggers for your headaches and general unwell feelings. I cannot tolerate foods with xanthan gum, yeast or cellulose, which rules out a lot of ready made food including bread. I also have problems with most of the nightshade family, and lactose. But they all give me GI problems rather than headaches.
Interesting that the wine on holiday did not give you problems. I wonder if you can find out if there are any differences between the wine you drank on holiday and the wine at home? Red wine has always given me a headache (flavonoids?).
Gluten free and good for you isn't the same thing, sadly. For me it's sugar, and all the ready made GF products, which are full of all sorts of suspect ingredients
Basically I just eat protein and fruit/veg. My one processed food is pea protein which I use for a smoothie in the morning. I do eat rice and potatoes occasionally. It's hard at first, but once you are used to it, it's like any other set of eating habits.
The worst part is when folk ask 'but what do you EAT?'
Hi Ruthi thanks for your reply, yes the gluten free food we are prescribed and can buy is something that is made in a laboratory and not natural at all.
I have looked at the paleo type diet before but never fully taken the plunge, although my diet has always been pretty good even before diagnosis, i rarely had takeaways and ready meals and always ate a lot of veg and as you say eventually you do get used to eating a certain way.
PS I have just gone to look up pea protein and found a website called bulk powders offering a £5 off discount for new customers.
Sorry to hear that you have issues with all of those foods, so far i haven't found anything that has triggered my symptoms from what I call natural foods such as potatoes or tomatoes etc. apart from dairy so I suppose I am lucky in that respect, it must be awful to not be able to eat these especially potatoes.
Since diagnosis in 2011 i have tried to keep a food diary and record my symptoms, it is only the last couple of months that i have found myself feeling well enough to be able to tell what is triggering them, previously most of the time i didn't feel very well and that was the norm. Now I am having periods of time when i feel well I am starting to have foods that i have suspected make me ill just to confirm it and i can feel the symptoms coming on.
I am wondering whether everyone who has these other issues with other foods were a long time without diagnosis and that is why our bodies reject other food types
Anyway thanks again for responding I hope you keep well
Not being able to eat nightshade is ok, just like not eating gluten, you get used to it. I eat things like sweet potato and other root veg instead.
One suggestion about food allergies is that they happen when the balance of our gut bacteria is upset (dysbiosis). Not eating processed foods and taking probiotics Is possibly helpful in sorting this out.
This is a report on the science, if you are interested.
Hi Penel thank you very much for providing that link, because I think I have had CD for at least 30 years now ( only diagnosed 5 years ago ) I am wondering whether my gut bacteria is completely out of sync. I did go to the GP many years ago saying I felt that I suspected I had helicobacter pylori due to periods of time when my stomach would feel incredibly bloated, the GP at the time did no tests and advised me to eat slower. Just wondering whether if this is part of the issue it would result in headaches though.
Do you know whether the bacteria supplements can be prescribed? Or a reputable supplement to take? I asked the GP's earlier in the year whether it was a good idea to take a well-known herbal remedy to try to stop the headaches, both doctors advised me not to buy the remedy and I saw a programme on the TV where they tested the over the counter remedies and some were expensive and useless.
As far as I understand you need to eat the widest range of fresh vegetables you can manage to give your gut bacteria what it needs. Supplements may help but 'real' food gives better results. You could eat live-culture yoghurt if you are ok with dairy (Yeo Valley do one) or look for other fermented foods.
Also you could try a good quality probiotic. You do indeed need to make sure that you are not wasting your money on rubbish.
Hi Penel thank you that is really helpful, I have made an appointment with my GP for next week and printed out the information you linked to regarding Dysbiosis.
HI Penel I have done a search and can find several websites saying it can cause headaches, fatigue etc but none of the websites are verified medical ones such as the one you have linked to. All I can do is take the paper to the GP and see what he thinks, I might take the paper up to the surgery before my appointment and ask if he has time he look into it. Thanks again you have been very helpful
If you want to find science reports, add PubMed to your search.
With regards to the paper on gut dysbiosis, the conclusion is the important part, I'm not sure that a GP would have time to read it all!
As the suggestion is to eat more veg and have a probiotic, perhaps you could just try that and see if it helps you? We're always being told to eat more veg.
Hi Penel yes the report wasn't easy to read i had thought about highlighting the important bits. I have started taking a vitamin tablet which has a probiotic ( I think i will look for something specific for the job when i go into town today) As for eating more veg we already have lots of vegetables in our diet, I always have liked dark green cabbage and have huge portions of it, we also have sprouts and broccoli and try to include them if not every day at least 5 days a week
I’m not a coeliac, but a couple of years back, I was so fed up with feeling ill, tired and sick all the time, I went to see a private specialist and through various tests, food diaries etc, discovered I was gluten & dairy intolerant.
However although various symptoms improved dramatically, I was still getting these really bad headaches, so debilitating, that some days, I could not work or speak to people, I had very stingy eyes, and felt nauseous! And also woke everyday feeling heady’ like a hangover, but I had not been drinking.
So we discovered for me, it was a substance called Tyramine, which is present in certain foods, for instance spinach & avocado, 2 things I was eating daily in my smoothies! (trying to be healthy!) And it’s also in wine, red, more than white!
Argh, so being so good , I still had this issue. However I immediately took the culprits out of my diet and no more headaches! Oh it’s also in hard cheeses too! If you google Tyramine, there is a lot on the subject with migraines!
So this worked for me, it may be worth trying too, who knows?
Hi Saffypig thank you for your response, I am happy that you found out what was the cause. Your headaches sounded awful, my eyes are also affected in that they feel very strained and achy.
I have tried to look for lists of foods that have tyramine and there are things such as yeast extract that i think i might react to and of course the wine but there are others such as Brazil nuts which i have started to eat for selenium which haven't caused a reaction.
Im really beginning to think that it is all the additives, maltodextrin etc etc, when I couldn't get "yummy" gluten free foods and ate plainly I was ok. Its the temptation of eating what "others" eat and the smells that waft out of fast food stores that beguile me,
I need the discipline I used to have, and I think Im getting back to wanting to feel good rather than eat these foods,
The latest thinking is that while eating like stone age man is good, the regime advocated by 'Paleo' enthusiasts is too low in carbohydrates, and stone age man probably ate more carbs when he could get them. Modern stone age groups go to great lengths to dig up roots etc. There is also archeological evidence that hunter-gathers collected starchy seeds when available.
Although not directly linked to gluten intolerance, there is an excellent book by Alan Christianson called 'The Adrenal Reset Diet' - which is where my smoothie recipe comes from.
I am hypothyroid (but not autoimmune) and under-treatment, plus some seriously stressful experiences put my adrenals out of whack, which is how I got to his book. But what he is suggesting is basically a paleo diet with the addition of small amounts of very complex carbs. Its worked very well for me. It will probably work for pretty well anyone who has residual problems even after they have addressed major dietary issues - and especially where weight control is an issue.
I had tried full paleo before, but it left me always hungry. The addition of small amounts of carb really helped - and not hungry is not tempted (as much) by the wrong things!!! I do still feel the urge to snack sometimes, but not nearly as much as I used to.
The first thing I might ask is, have you been diagnosed by a doctor as gluten intolerant? If not why are you on a GF diet? The doctor has prescribed Topiramate but you don't take it. Mind you it is pretty heavy stuff. Have you talked to your doctor? Have you asked him why he/she has prescribed Topiramate. Have you had any medical investigations as to why you get migraine? Because it could be something as simple as eating chocolate or drinking coffee. From what you say it sounds as if you are going down the path of self diagnosis and that only leads to misery. If the doctor prescribes Topiramate it must be for a reason or they are just incompetent/indifferent/prescribing the first thing that comes to hand. Talk to him/her, if they are of the later then get another doctor. Don't ask us here to diagnose you as we really are not qualified to do that. Seek professional help from someone who is actually qualified to give that help.
Can I just throw something totally different in the mix.
I have suffered bad headaches for years, waking up most mornings with a fuzzy, painful head and often dizziness. I keep back tracing to what I had eaten the night before and eliminated it out of my diet (I am already gluten, dairy, sugar, meat and legume free) so much so that I ended up living off of thin air. After reading that people on this site sometimes went to see an immunologist I badgered my GP into referring me as I wanted immune response tests done. He did a battery of test which showed I wasn't reacting to egg, mushrooms or some of the other foods I had eliminated but my response to dust mites was very high. I have since wet dusted my bedroom as much as humanly possible, got special dust mite covers for my mattress, pillows (had to throw my feather ones away as feather is the worst for harbouring dust mites), and quilt (my feather quilt went the same way as my pillows) and I now use diatomaceous earth to clean everything I can and I unmake my bed every day as dust mites love dark warm places so throwing the covers off the bed kills them.
Just thought I would share my experience as I would never ever have twigged that it was these horrible little mites that had been giving me headaches for years and I am now I am headache free 99% of the time.
Hope this helps as I know how frustrating it is not being able to pin point the cause of headaches - you end up going round and round in circles and eliminating so many foods that you dont know which way to turn.
Hi Moggie thank you for your post, glad to hear that you have found out the cause of your headaches, although its sounds like hard work trying to keep it all under control.
I only found out i had CD after visiting an immunologist who i saw on the NHS, he tested every patient who attended his clinic and therefore found out my diagnosis. I asked to be referred to him as I was sick of feeling unwell in summer (if it was a wet summer i ended up with awful asthma and was on steroids every year) which by the way made me feel fantastic and gave me so much energy.
At the clinic I had quick pin prick tests ( by quick I mean whilst I was on the appointment as i know someone else who was sent home with substances on his back to see if he reacted for a longer period) had tests for numerous other allergies including one called the ISAC test which i think tests you for about 150 different things and I was told i wasn't allergic to anything ( other than mild hayfever). How accurate the tests were i don't know as i was told at one appointment I was allergic to plantain the vegetable, then I asked whether it could be plantain the weed and was told yes it could be, then later on was told the test was flawed anyway so I wasn't allergic to anything!.
A few weeks ago I called the clinic to see if I was ever tested for histamine intolerance as that was something that popped into my mind and apparently i wasn't, as it isn't something that is routinely done, that test costs a lot of money and the clinic had just authorized a test for a patient which had to be sent to Belgium.
As you so rightly say not knowing is the most infuriating thing about it all, at the moment I feel well and am off to the doctors tomorrow morning, just wondering whether to have a piece of homemade GF chocolate cake and a glass of white wine, both of which I have down as culprits for starting the headache, I know it sounds stupid to think about triggering it but its the only way I can think of ascertaining whether these are triggers or its just a coincidence.
Thanks for posting again, even if it hasn't pinpointed my problem it might help someone else who looks at the forum. Keep well x
Good luck with your detective work and I hope you can pin point what your trigger is as, being a headache sufferer for 35+ years before I found mine, I know how debilitating they can be.
My daughter is coeliac too and has been plagued with daily migraine headaches. She was taking beta blockers and was referred to a neurologist. Gave up dairy which had minimal impact. She has finally found what seems a cure. She had an ear piercing which uses the same pressure points as acupuncture and has been found to have some good results. I think it's called a daith piercing. She still has the odd headache but it's not daily. I believe it's more effective on certain types of headache but it's working for her.
Hi Bethryan thank you for getting in touch with me. glad to hear that your daughter has found something that helps her, the headaches are awful.
I joined the migraine group on Healthunlocked and there are a few people mentioning about the daith piercing. I was considering having the piercing done, however I had just bought some Swansons feverfew and high dosage magnesium tablets from Amazon. I spoke to my GP about trying these and he thought it could do no harm. I had been subscribed Topiramate by a different GP and also a neurologist before diagnosis of the CD and I really didnt want to be on such a strong medication all of the time, so never took them.
I took the feverfew and magnesium religiously for about 3 weeks and didn't have a headache, I really thought that i had found a cure, then I had a really bad headache and was really down, I haven't taken the feverfew since but haven't been having the headaches either, I sometimes get the feeling that a headache is about to come on and if its in the background but its very, very mild, more a feeling than a headache, but so far ( I am touching wood as I write this) I haven't had the headaches that I was getting, I think I have taken 1 Sumatriptan in the last couple of months, before I was taking them regularly.
I have no idea why the headaches have subsided, but am grateful that they have, I still think they are caused by the CD as I went diagnosed for around 25 years and I have now been GF for 5 years and wonder whether my body needed to heal.
Thanks again for taking the trouble to help, hope your daughter continues to be headache free
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