New to the forum

Hi Everyone, I am new to the forum, I have no diagnosis of coeliac. My background is that I have been suffering with bad migraines and headaches for 40 years. I have been trying everything I can think of stop them. I went on gluten free diet in June this year and felt healthier but the headaches did not go away. I have now decided to cut out dairy - a week ago - and I am hoping this may be the key I have been searching for.

I have been feeling pretty lonely in this undertaking as many people seem to view me as strange for cutting out these foods. I got to the point where I simply want an end to the pain and I didn't care how restrictive the diet as long as I feel better in myself. I was stubborn in keeping to the diet even though I saw no great improvement in headaches. The reaction I have from family etc, to cutting out more foods, rather than giving up and "eating normally" has not been very supportive. Had I been advised to do so by my GP, I think I may have got more support.

I am hoping for some understanding and encouragement, and have been pleased to find this forum.

11 Replies

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  • Hello Lapwing, welcome to the site.

    There are a number of different foodstuffs which are known to cause headache symptoms and it would require an exclusion diet to exclude these from your diet and see if they made any difference.

    Migraine & Coeliac Disease have been discussed on this platform before. See this link.http://glutenfreeguerrillas.healthunlocked.com/blogs/250136/Migraines-more-likely-for-people-with-coeliac-disease You may find the discussion comments useful.

    Feel free to type in the search bar for other dietary causes e.g. lactose, histamine, dairy intolerances.

  • Hi Lapwing, I am so sorry that your doctor doesn't appear to have helped to cure you of your chronic pains . Here are just a few thoughts that I hope may be of help. You mentioned that you have both headache and migraine for forty years. Are you on a specific medication for them? Do you see your doctor fairly regularly?

    I know of two people who had similar problems to this. Both had extreme head pains for over twenty years. The first lady was so desperate she paid to see a specialist to try and get a cure. She had been buying tablets, quite strong ones - she took them two-at-a-time, which kept the headache away until it was time for more tablets. At first she failed to tell the specialist about the over-the-counter tablets she was taking but eventually she mentioned that she just couldn't live without them as these were the only things that helped with the pain. Apparently, after he examined the pain killers, he told her that they were creating a cycle. He told her not to use them ever again and he recommended a different tablet and gave her a table when she was allowed to take them. He told her that provided she followed the instructions her pains would go completely. She didn't believe him as they were so very bad - but she did follow his directions and the headaches/migraines completely went.

    The second lady was also doing the same thing - two tablets at regular intervals to keep the pain down. She also was given similar advice and after quite a lot of persuasion followed the regime - she too didn't think the advice would work but it did.

    *****************************************************************

    I have mentioned the above as a possibility, as there are so many things that may be causing the problem and you haven't mentioned any details of whether you may be on prescription drugs to control the pain or whether you are using your own discretion.

    Finding the cause may prove difficult - Firstly, I would advise you to begin keeping a food diary and checking ingredients of foods that you purchase. For instance it is known that aspartame can trigger migraines as can cheese and chocolate. Dehydration is also a common cause for headaches which can be triggered in many people who substitue water for cola, coffee, sugary drinks, etc all of which cause the body to become dehydrated. So try and have regular sips of still water - perhaps begin the day with half-a-pint of water.

    Here is a link about a herb called Butterbur - it is an old-fashioned herb that has been used to help people's migrains so it may be worth considering - perhaps your doctor may know of more details concerning it:

    naturalnews.com/028866_butt...

    Many preserviatives in food can trigger both headaches and migraines so perhaps check your diet and see whether you are consuming any preservatives and if so try and stick to a simple natural diet for a while and see if that helps. Shortages of many of the Vitamin B's and also Vitamin D can bring about the onset of migraines and severe headaches. Imbalance of minerals within the diet can also be a trigger. High blood pressure is another cause. Monosodium glutamate or MSG is a trigger as are food colourings and in some peope even sugar causes traumatic head pains.

    A few more links that may be of help:

    naturalnews.com/027282_head...

    The World Health Organization has an information sheet on this link:

    who.int/mediacentre/factshe...

    This may be a useful link if you feel that you may like to eat simply for a short while to see if this helps your situation. It is called a Paleo Diet and as the word suggests it is eating in a similar fashion to the way that they did Centuries ago - a sort of semi Cave-man diet which takes out modern foodstuffs - it is worth looking at to get a few ideas if you wish to cut out the usual triggers for head pains.

    nerdfitness.com/blog/2010/1...

  • Thanks for your reply. I appreciate all you have written. I have been aware of the rebound headache cycle which happens with medication. I have gone cold turkey in the past for 4 months, no painkillers and the pain was unrelenting, and at the time it was daily. I have tried a whole list of things from feverfew to cutting out cheese, chocolate, alcohol, citrus etc, to supplementing with magnesium (still doing this), light therapy, HRT, a dental splint for TMJ, low dose aspirin, anti depressants, and some other migraine preventatives. Some of these have helped, others not. It is interesting as I have been anaemic, had stomach issues,suffer from cold feet and have had dizziness and strange red and painful eruptions under the skin on my nose. I am now wondering if all these are linked?

    I am on the Paleo diet now, as you mention, and have cut out most sugar and I am eating without additives as much as possible. I can't tolerate smoked food because of the nitrates. I cut out milk 8 days ago, and had 1 headache on day 3, which was a withdrawal sort of headache, not my usual sort. Since then I have had no headache, so I am so hopeful this is the answer, but I have been hopeful so many times before and then been disappointed. Could this really be the answer, I so hope so. Prior to cutting out milk I was having migraines 3 times a week on average.

  • Hi Lapwing ...I hope this group will provide the type of support you're looking for... it certainly has for me. I'm not officially Celiac, but I have family history, genetic markers and all the symptoms. I do what my body tells me. If a feed makes me sick I don't eat it. You know what's best for you ... I admire your courage... keep up the good work! If you need gluten free or lactose free recipes perhaps my web site can be of some help foodchallenges.ca

  • Thanks Liana, I am glad I have finally taken the plunge and reached out by joining this group. It is great to get so many messages of support. There are autoimmune diseases in the family. I have had an endoscopy a long time ago,but it didn't show I had coeliac disease so I suppose I ruled it out as the possible solution. And it seems that I needed to cut out dairy as well. I will certainly check out your website, I am starting to branch out and cook from scratch now. It is a bit difficult finding sauces etc which I can use, so it makes sense to cook my own food.

  • Hi Good luck in your search to find out what's wrong. I sometimes get what finally I worked out are migraine aura symptoms (the swirly lights, though not the headaches) and was getting a lot of them at my worst time with gluten. I never knew if there was a correlation (my optician thought it might be down to the low B12).

    I hardly ever get them now I'm relatively healthy again. The only thing I distinctly noticed was that at one point after this I started drinking Diet Coke again daily after a long gap and they came back with a vengeance. I don't know what's in Diet Coke (maybe just caffeine, though I happily drink tea and coffee) but I stopped drinking it!

  • Hi, I am another newcomer. I have bipolar disorder and have been experimenting with diet for years. I improved sleep and removed seasonal allergies by not eating wheat together with protein foods and finally went gluten free for 6 weeks. Now I get a strong reaction ( pain and then diarroea for several days) to the most minute bit of wheat/gluten. Oats were terrible as they obviously lingered in my system longer. I went to my GP but we agreed that I cannot go through weeks of gluten just to get a diagnosis. I am trying not to overeat starchy non gluten foods ( like rice bread), as I overdid this after realising I could not eat gluten/ wheat any more. I have 2 different groups of friends that I go out for meals with and have found it to be very offputting getting glutened.

  • Yes, yes and yes! Hi Chlorophyle your story sounds a bit like mine. Yes, I found that once I stopped eating wheat and gluten containing foods, my system became hyper sensitive to it. Yes, I also refused a gluten challenge and the specialist agreed, so I had the DNA testing done to rule out Celiac Disease. Instead, it simply confirmed that I had the genetic predisposition to develop the disease. We have family history, the genetic marker and I have all the symptoms, so we just assume I have it and I don't eat wheat or gluten containing foods. Yes, dining out can be a challenge, but it can be done successfully. Call the restaurant in advance and talk to the chef, read menus online where possible, let your server know, go on nights when they are not as busy and can devote more time to you. It can be done. If you want some recipes and articles, visit my web site ... I've been through this myself foodchallenges.ca... Best wishes for success!

  • Hi, have you thought about seeing a chiropractor?? Sometimes the problem is in the alignment of the spine going into the top of the neck?? Can cause nerves to get compressed thus causing the headaches??

    E,x

  • Hi, yes actually my brother is going to treat me to a session with his chiropractor, as a birthday present! So I will let you know the outcome.

    L.

  • Sounds good!.

    I have Trigeminal Neuralgia and am thinking of trying Chiropractics as an option to see if it helps with that type of pain. :-)

    E,x

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