Gluten migraines and other food sensitivities

[Ariadne100]

Hi everyone,

I've just joined so hopefully I'm writing this in the correct section. A few years ago I was having problems with a rash on my face and a 'full' feeling in my head so I got referred to the allergy clinic at the hospital. All the tests came back negative but because I mentioned in passing that I had irritable bowel symptoms they referred me to the dietician. I nearly didn't go because I assumed she'd just tell me that I was eating too many vegetables or something (at the time I was vegan). I'm so glad I went because it ended up being quite life changing. I told her about my symptoms which included the rash as well as my stomach swelling up by the evening and having to carry immodium around with me because I often had to 'suddenly go to the toilet' lol. She said she thought I was intolerant to wheat and suggested I cut out the wheat cereals for breakfast. I misheard her and thought she meant cut out all wheat, so that's what I did. I went completely gluten free and not only did my bowel issues and stomach swelling all go, it also got rid of other symptoms I hadn't thought were related such as getting the shakes when my blood sugar would drop and most crucially, migraines. At the time I was regularly taking triptan tablets for weekly migraines. Since going gluten free over a year ago I think I've only had about 5 migraines and they were triggered by either strong chemical fragrances or eating gluten by accident.

I've recently gone from being vegan to pescatarian because I was getting pains in my arms and exhausted on the vegan diet, probably because being a gluten free vegan meant a very restricted diet. I now eat dairy and fish again and mostly feel better with no pain and more energy but I'm noticing that I now react badly to certain foods I've tried to reintroduce. For example, yesterday I ate a bowl of Heinz tomato soup and later that day I suddenly felt symptoms of a silent (painless) migraine come on - sleepy and drowsy, lights too bright as well as feeling like I was going to be sick. I can't be sure that it was the soup but the smell of it made me want to be sick. I think I got used to eating a very fresh, mostly chemical-free diet when I was vegan where I cooked almost everything from scratch so now when I eat most processed foods most body reacts badly. I also can no longer have Heinz tomato ketchup or beans, they smell very synthetic to me and it makes me nauseous, I think it must be something they put in them because I'm find with fresh tomatoes or simple non-processed tinned tomatoes.

I feel tired today because I fell asleep at 8pm feeling drowsy and sick, got up to wash up about 11pm, then fell asleep by accident in all my clothes until 5am before going back to sleep. I wouldn't have had such a crazy night if I hadn't had the migraine symptoms. It always creates a knock on effect of being very tired the next day. I don't have days like this as much as before but it's tricky trying to reintroduce foods because I'm not quite sure what I'll react to.

Anyway just posting this here in case other people can relate. I wish my body wasn't so sensitive to things that other people can have as it has a big effect on my life. I also can no longer drink tea or coffee as it was causing me to have an irritable bladder. I just have to really limit eating processed foods as they really seem to mess up my body.

Thanks for listening,

Ariadne

[trents]

Did you check the ingredients for the Heinz tomato soup? Many or most canned soups use wheat starch as a thickener. 

[Ariadne100]

23 minutes ago, trents said:

Did you check the ingredients for the Heinz tomato soup? Many or most canned soups use wheat starch as a thickener. 

I always check labels. It doesn't label wheat or anything related to wheat or gluten in the ingredients. But there's always the possibility they make it in a factory that manufacturers wheat-containing products. Either that or I'm intolerant to something else in it.

[GFinDC]

Hi,

It sounds like you were low on B-12.  B-12 is a somewhat common issue for untreated (not on the gluten-free diet) celiacs.  And for vegetarians too.  So double whammy there.  It is a good idea to ask your doctor to test your vitamin and mineral levels to see if they are ok.  Get a copy of the results so you can see for yourself if anything is on the low side of the ranges.

Gluten is not just wheat.  We also have to avoid rye and barley.  And some of us react to oats also.

[trents]

Ariadne,

You say you always are careful to read food labels so we assume you are avoiding gluten. But GFinDC makes a good point about about the vegetarian diet and the challenge it presents in regard to B12 deficiency. Even though you do eat fish and may be getting some B12 in the fish you consume, it may be much less than your body actually needs. There are essentially no known plant sources of B12. The only one I know of is some kind of fermented bean curd that is found in some Asian cultures. Do you also eat eggs and dairy? Do you take a strong B12 supplement?

Having said all that, could you have developed some migraine triggers that were not originally present? As one who suffers from migraines myself, I realize those can be difficult to pin down. There are many things that can trigger migraines. Everything from what we eat/drink, to stress, to disrupted sleep habits, etc., etc., etc. And the hard thing is there are often thresholds. By that I mean we can consume a certain amount of something and get no migraines but if we consume more of it then we get them. So that makes it difficult to pin down. Have their been any changes in your diet or lifestyle lately?

I have cluster migraines and every year about this time of year (late winter/early spring) I start getting them. I'm not sure what's going on there. Is it changing daylight/darkness patterns? Pollen? I sympathize with you. My only relief at these times comes from the medication sumatriptan.

[Ariadne100]

Thanks GFinDC and Trents for your replies. I had my bloods tested last summer when I was vegan and it turned out I was vitamin D deficient as well as slightly deficient in calcium. The pain went when I started taking Vitamin D and calcium supplements, but then it returned so I decided to stop being vegan because it didn't make sense to be vegan if I couldn't do it and stay healthy.

I now eat fish, eggs, cheese, yoghurt etc as well as lots of vegetables, fruit, nuts, seeds, beans, pulses and gluten free grains and haven't had any pains in my arms since adding these back in. I still take vitamin D, calcium, iron and B12 in case my diet doesn't cover it. Basically I eat everything apart from meat and gluten and oats. I learnt that I was intolerant to oats, they also give me migraines and hypoglycaemia. I was confused for years because everyone said how great and healthy porridge was, whereas when I ate it I always used to get the shakes about an hour afterwards and need to eat again otherwise I'd feel ill shaky and headachy. I have tried gluten free oats but they are no different for me so I avoid all wheat and gluten containing things, all oats, all barley, all rye etc.

For grains I just eat corn including polenta, quinoa, teff and rice. I have all gluten free flours and gluten free bread.

I think what happened was that I've developed a sensitivity to whatever is in these Heinz products by not eating them for a year, either that or my gluten intolerance was masking a reaction from them because the last time I ate them I was still eating gluten. 

[knitty kitty]

Taking a B Complex supplement in addition to the B 12,  might be advantageous.  The eight essential B vitamins all work together and because they are water soluble, they need to be replenished every day.  B 12 needs folate, thiamine (B 1) and riboflavin (B 2) and pyridoxine (B 6) to function fully.  

Supplementing with Riboflavin, Vitamin B 2, has been shown to help migraines and cluster headaches. 

https://pubmed.ncbi.nlm.nih.gov/28485121-prophylaxis-of-migraine-headaches-with-riboflavin-a-systematic-review/

And vegetarians might not get enough.....

https://ods.od.nih.gov/factsheets/Riboflavin-HealthProfessional/#h5

Tomatoes, potatoes, eggplants, and peppers and even mustard are all nightshades.  Nightshade vegetables contain alkaloids that promote leaky gut physiology.  

https://pubmed.ncbi.nlm.nih.gov/12479649-potato-glycoalkaloids-adversely-affect-intestinal-permeability-and-aggravate-inflammatory-bowel-disease/

Hope this helps!  

 

[Ariadne100]

Thanks for the info about B Complex vitamins Kitty. I did used to take a big tablet which contained all of them but it gave me a red itchy face which I learnt was 'niacin flush.' It went as soon as I stopped taking them. It also turned my urine bright green, so I'm now just taking B12. The blood tests didn't say I was deficient in B vitamins so I'm not sure whether it's worth trying to take them again. I don't have any problems just taking B12. I'm due to get my bloods tested again soon to see how they have changed since taking supplements and adding dairy and fish back into my diet.

That's an interesting point about those vegetables being in the nightshade family. I can't digest pepper so I avoid it completely but I do like tomatoes and potatoes. I don't usually have any problems with them, my gut is telling me there is a chemical in the Heinz products I'm intolerant to. I'm very sensitive to chemicals in perfumes and toiletries for example, they can often give me an instant migraine. I got so used to eating fresh unprocessed foods that anything processed like that tends to make me feel physically sick. I also can't tolerate many sauces, for example gluten free Tamarind or Miso make me feel sick, as does all Chinese food.

I heard that a lot of people with gluten intolerance or celiac disease find they are intolerant to a lot of other foods once they go gluten free, so it seems that has happened to me too. My blood test for celiac disease came back negative so I assume that means I don't have it, although part of me still wonders if I do. 

Edited February 12, 2020 by Ariadne100

[trents]

Ariandne100,

Sounds like you have done a good assessment here of things that likely will cause you issues. I find that over time I have developed various kinds of reactions to things that never used to bother me. Some of may be related to plain old age-related changes. Our immune system becomes more dysfunctional as we age even in the absence of celiac disease and our digestive system becomes less efficient and more sensitive.

[cyclinglady]

1 hour ago, Ariadne100 said:

My blood test for celiac disease came back negative so I assume that means I don't have it, although part of me still wonders if I do. 

Know that about 10% of celiac disease patients are seronegative.  Know too, that not all celiacs test positive on the commonly-used screening TTG.  In my case, I test positive to only the DGP IgA, yet I had intestinal damage.  If my doctor has not ordered the complete celiac panel, my diagnosis would have been missed.  So, you might really have celiac disease.  

You can consider a “gluten challenge” and get retested, or just continue to be gluten free.  Only you can decide what is best for you!  

I wish you well.  

[trents]

To what CL said I would also add those who do have celiac disease or gluten intolerance/sensitivity will experience improvement when eliminating gluten. That would make endoscopes and lab work unnecessary except to the extent of providing peace of mind and perhaps reinforcing the need to eat gluten free. The crux of the matter, whatever your test results turn out to be or even if you don't get tested, is whether or not eating gluten-free works to relieve your symptoms. 

If you do decide to do the gluten challenge to get tested, I would work gluten into your diet very gradually. If you have been gluten-free for a long time and suddenly throw a heavy dose of gluten in your gut, it may not like it at all, even if you are a celiac. That's true of anything new we introduce into our diets. 

[Ariadne100]

Yes I feel conflicted about getting retested. I know there are a variety of tests you can have to check for Celiac disease, I just had the one blood test several years ago when I was still eating quite a lot of gluten. Relatives on both sides of my family have a lot of bowel issues like IBS, diverticulitis, crohns, some other stomach problem I've forgotten the name of, and gluten intolerance. We even joke about '(our family name) Bowels' because so many of us have issues. But nobody has tested positive for celiac disease. My dietician said I have Non-Celiac Gluten Sensitivity due to my negative celiac result but symptoms caused by gluten.

Eating gluten tends to make me feel quite unwell, it gives me diarrhoea, a big round bloated stomach that makes me look pregnant, a rash on my face, hypoglycaemia and migraines. I feel like it's a lot of pain to go through to get retested, especially if it was negative again. And if it was positive, they'd just say go gluten free, which I am anyway, so is there much point? On the other hand, are there any reasons why it's important to definitively know whether it's celiac or not? I'm mostly quite strictly gluten free, for example I rarely eat out and cook most meals from scratch. I got rid of my old toaster etc so am not around any gluten products. But sometimes I do still eat things if it says it was made in a factory with wheat products, simply because I find it so difficult to find completely gluten free foods unless I heavily restrict my diet, which tends to cause other issues like vitamin deficiencies. I also struggle with feeling guilty insisting on being gluten free due to my negative celiac test - it makes me feel like I'm being fussy and following a 'fad' since a lot of people are very negative about non-celiacs who say they can't tolerate gluten either.

Can you tell me the other tests you can have for celiac disease so I can ask my doctor about it? I saw someone mention a full celiac screening with a variety of tests but I'm not sure what they are.

[NNowak]

With you being gluten-free for an extended period of time, I believe the only other test available is a genetic test. You cannot have celiac if you don’t have one or both of the genes. The antigliadin antibody is now the biomarker for NCGS, but the labs don’t run this as part of the celiac screening now as it was replaced by the DGP. Depending on when your bloodwork was run, you may have this biomarker to reference. 
 

Please don’t feel guilty about making sure your meal is gluten-free. Whether you have undiagnosed celiac or NCGS, you have a condition that requires a gluten-free diet. It’s not a fad, it’s a prescribed diet for your health. My youngest daughter has NCGS and has the rash on her face as well as the stomach pain and migraines. She’s 13 and wants to fit in with her friends, refusing her gluten-free diet away from home. I have celiac and had that rash, eventually developing DH on other parts of my body. While my rash mortified me as a teen, it’s not a deterrent for my daughter. 
 

I hope some of this information is helpful. Be well!

[cyclinglady]

Here are the tests:

https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

You can remain gluten free.  My hubby went gluten free 12 years before my diagnosis per the poor advice of my allergist and his PCP/GP.  But the diet worked.  He refuses to do a challenge.  While he says I get more medical, family and friends medical support, it has not been bad.  Support has improved since my diagnosis.  A recent Mayo Clinic study showed that the percent of first-degree relatives is much higher that once thought (10% vs 43%).  Oddly, spouses are getting diagnosed.  Is it environmental or do genetically-like people gravitate towards each other?    Inquiring minds would like to know.  

[Ariadne100]

Thanks everyone. Today I developed the hot red rash on my face again, so whatever I ate my body has reacted to it. I think it probably was gluten in something, although I didn't get the full range of symptoms, just the migraine and the rash. I've also got a feeling in my throat that I usually get when I eat kiwi which I seem to be allergic to, it's like a slightly constricted scratchy feeling. I've taken an anti histamine that my doctor prescribed which seems to have helped a bit, it's also made me feel a bit like a chilled out hippy (much more relaxed than I usually am!) which is an odd feeling but better than panicking about my symptoms.

I'm going to do a food diary again to see if I can pinpoint any culprits because I'm not exactly sure what I'm reacting to as I've added several new things back in to my diet at once. I didn't expect to have any problems since it's mostly just dairy but I do seem to develop new intolerances and even allergy like reactions to things I used to be able to eat every few months. For example, I don't remember having trouble with kiwi when I was young but if I eat it now I get a mild allergic reaction.

I'll check out the tests you have listed when I'm feeling a bit better.

[Ariadne100]

Also, thanks for saying that I shouldn't feel guilty NNowak. The allergy type symptoms I've got today made me realise I'm not imagining being gluten intolerant and that I have to stick to being gluten free to look after my health. To be honest almost everyone I've told about being gluten free have reacted helpfully and supportively, including colleagues and staff in cafes, so nobody is giving me a hard time about it. Staff have often made me off-menu meals and have been excited to check ingredients for me. Even a rather frosty woman at my local hobby group said 'well if you can't eat something you can't eat it' matter of factly.

I think it's just me giving myself a hard time, perhaps because I've seen articles and seen online comments occasionally about gluten free being a middle class fad for fussy hypochondriacs. I do agree that if you can tolerate gluten fine, there is no need to remove it from the diet. It's just difficult to explain to people why I can't eat gluten when I'm not celiac, especially since a lot of doctors still don't seem to understand NCGS. My doctors were happy for me to keep taking triptans and other medication for migraines and seemed a bit dubious when I said I didn't need them anymore since going gluten free.

[trents]

Ariadne100,

I think we can all relate to the skepticism you describe from people, even in the medical community. I look at it as belonging to the vanguard of medical discovery. I imagine disease researchers got the same treatment in the 1800's when they were telling doctors that infections were being caused by organisms too small to be seen with the naked eye. And it doesn't help those of us who truly do have issues with gluten consumption that there is a faddish element to it in the general population. 

[Posterboy]

On 2/11/2020 at 11:31 AM, Ariadne100 said:

For example, yesterday I ate a bowl of Heinz tomato soup and later that day I suddenly felt symptoms of a silent (painless) migraine come on - sleepy and drowsy, lights too bright as well as feeling like I was going to be sick. I can't be sure that it was the soup but the smell of it made me want to be sick. I think I got used to eating a very fresh, mostly chemical-free diet when I was vegan where I cooked almost everything from scratch so now when I eat most processed foods most body reacts badly. I also can no longer have Heinz tomato ketchup or beans, they smell very synthetic to me and it makes me nauseous, I think it must be something they put in them because I'm find with fresh tomatoes or simple non-processed tinned tomatoes.

Ariadne100,

I do a lot of deep research...this might help you.....do some research on sulfites....vinegar can be a source of sulfiites (avaliable in ketchup where the disclosure of sulfite content is usually not required)... here are some links that might help you....

http://www.orthomolecular.org/library/jom/1984/pdf/1984-v13n02-p105.pdf 

https://www.migrainekey.com/migraine-trigger/sulfites/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4017440/

I hope this is helpful but it is not medical advise.

Posterboy,

 

[Corinne D.]

Hello Ariadne, a bit off your topic, but related to the discussion. Among the fatty fish, mackerel, herring and sardines are incredibly good sources of B12. E.g. 100 grams of mackerel gives you 791% of the RDA, 100g of herring 547%. If you have two servings of these fishes a week, you don't need to take B12 supplements. Also, in case you also eat other seafood, oysters are even better.

[Ariadne100]

Thanks Posterboy and Corinne, that's very helpful information about the vinegar and the fish. I have put mackerel on my shopping list alongside tuna and salmon, I used to like mackerel on toast. I find a lot of fish too strong but I will slowly reintroduce them to get the nutrients.

I've been struggling since posting this with slightly red cheeks/a rash and that slight feeling of breathlessness, plus a full feeling head. I remember this from before going vegan and gluten free. I think I still had these symptoms when I was vegan, as I saw the dietician when I was vegan. I've started tracking what I eat, because I must either still be eating gluten somehow, or this is some kind of gluten hangover from last week, or I'm allergic/intolerant to something else (I've been wondering if it's dairy but that doesn't seem to make sense).

I've been taking anti histamines, because it does feel like a kind of allergic reaction. It's a bit stressful/worrying, but I get fed up of going to see my dr because you have to ring in the morning multiple times to get through to get an appointment, then when you get to the drs surgery you often have to wait an hour to see the doctor, who usually looks at me skeptically like I'm a hypochondriac and prescribes me some medicine which I could just buy at a pharmacy (such as the anti histamines). It often takes up most of the day to go through this process, it often feels like a waste of time and is draining. They also don't seem to understand gluten intolerance so that doesn't help.

I guess the food diary should indicate possible causes within a few days. What's unusual this time is that I'm not getting my other 'glutened' symptoms of a swollen stomach and diarrhoea and migraine, it's just a red rash on my face and a slight breathless feeling that comes and goes.

[Posterboy]

On 2/13/2020 at 1:11 PM, Ariadne100 said:

Thanks everyone. Today I developed the hot red rash on my face again, so whatever I ate my body has reacted to it. I think it probably was gluten in something, although I didn't get the full range of symptoms, just the migraine and the rash. I've also got a feeling in my throat that I usually get when I eat kiwi which I seem to be allergic to, it's like a slightly constricted scratchy feeling. I've taken an anti histamine that my doctor prescribed which seems to have helped a bit, it's also made me feel a bit like a chilled out hippy (much more relaxed than I usually am!) which is an odd feeling but better than panicking about my symptoms.

Ariadne100,

Just on a lark.....I googled to see if Kiwi could be something anybody has every reported as being allergic too....and apparently Kiwi allergy is a thing for some people. Here is a link that  might help you.

https://www.medicalnewstoday.com/articles/317776#Causes-of-kiwi-allergy

I am actually going to share this resource with a friend of mine who's wife has banana/latex allergy because they seem to have a common cause.

You might also do some research on an what/how Oral Allergy Syndrome (OAS) can present itself.

I hope this is helpful but it is not medical advise.

Posterboy,

 

[BubbleGirl2]

I was diagnosed 7 years ago and have other issues including Celiac. Regarding migraines I just want to add that I had suffered from severe migraines for 10 years. It was found my Vitamin D level was very low and after therapy, (took a couple of months) the migraines were gone. I am sometimes triggered by fodmaps and will get a migraine which took quite some time to figure out after doing the elimination diet religiously. The hardest part is sticking to it but it's very worth it to find the foods that trigger reactions. There's so much information coming at you in the beginning, it's great using this site. Best of luck.