Welcome to the forum, @Neat1! Can you list the celiac blood antibody tests that were done? Another possibility is that you are IGA deficient which can create false negatives on IGA-based antibody tests. There is a blood test to check for that, commonly known as "total IGA" but many docs don't know to run it.

Hey there, I had a blood test for celiac (was eating copious amounts of wheat) that came back negative, but I’m still having problems with digestion that are worse when eating wheat. While I have overlap with some symptoms similar to SIBO or dysbiosis there are some that still make me think it’s celiac. After ingesting gluten I have terrible neck and shoulder pain. This is repeatable; I thought I slept on it wrong so after pain abated I ate gluten again, bam, pain returned. Being not specifically digestive this is indicative of an autoimmune response, right?  for what it’s worth I’ve been to a gastroenterologist but after testing for celiac and receiving a negative result they wrote me a prescription for Linzess and told me follow up with an APRN. No further testing of any kind.   Thank you for reading my post and I look forward to any insights others are able to share from their experiences

Hi @Sarah Grace I'm a British coeliac too, and have had quite a number of different types of migraine. ***Are you under a gastroenterologist and receiving annual coeliac blood tests to test for compliance, and perhaps also for deficiencies?  If not, I think that is worth considering.  If gluten is still sneaking into your diet that could be the issue.*** That said, for me there was a huge improvement when I went gluten free, but I still get nauseating migraines from time to time, and a new type since going gluten free - aura migraines where I lose my central vision (the middle of my vision looks as if water is running down glass).  This tends to be triggered by small screens and close work.    I know that in the past thirst was a massive trigger for me, and also low blood sugar.   Another contributor for me is tension in my neck caused by poor posture or cold weather, and certain light conditions, like low sun in the winter, can start one up.  One other thought - have you looked into sleep apnea, which can cause migraines?   But in any case, I think I'd be inclined to contact the Migraine Trust if you haven't already.   https://migrainetrust.org/ Cristiana  

hi knitty, I figured while reading the first few paragraphs of your post that thiamin would come into the conversation, haha. Anyway, I just had annual physical and asked for the b vitamins and others to be incl in the blood test. B12, folate, and b6 came back about mid range but they did not take enough blood to complete the b1 and b2. Are the good results for b12,folate, b6 a good indication that thiamin is ok or should I have another test?

Thanks Scott, The hay was all I could think of causing a problem and good to know others have had the same problem. Since we feed alfalfa and wheat on alternate days, I am just feeding on the alfalfa days and the eyelid rash is much better.