Migraines And Celiac

[ADevoto]

I have recently had a blood test done and it came back with one of the main celiac genes but everything else was negative. I have always had severe intestinal problems which all the doctors tell me are IBS. I have been living with this since I was 12. But what is more of a problem is that I have severe migraines a lot. (6 times or so a month). No medicine seems to work. I still have a nagging feeling that it is all related even though the doctors tell me no way.

Any thoughts. Anyone else have severe migraines?

[RiceGuy]

I used to get severe migraines, but thankfully no more. Have you been on a 100% gluten-free diet? If so, for how long?

Another thing which causes migraines for many people besides gluten is MSG. Look Open Original Shared Link for lots of good info.

I'd also point out that the 'S' in IBS means Syndrome, because the actual cause is unknown. So when your doctor says it's IBS, he's really saying he doesn't know the cause.

[ADevoto]

I used to get severe migraines, but thankfully no more. Have you been on a 100% gluten-free diet? If so, for how long?

Another thing which causes migraines for many people besides gluten is MSG. Look Open Original Shared Link for lots of good info.

I'd also point out that the 'S' in IBS means Syndrome, because the actual cause is unknown. So when your doctor says it's IBS, he's really saying he doesn't know the cause.

[ADevoto]

Sorry about that last post. New to posting. I am not on a gluten-free diet because the doctors keep telling me that it isn't related and that just because I have the gene doesn't mean I have it. Especially since my blood test came back negative. Although, I still have all sorts of symptoms.

Soo frustrating.

[ravenwoodglass]

I would recommend that you give the diet a try. The blood tests are not infallible. My doctors going off my blood test results delayed my diagnosis for many, many long and painful years. My signature kind of says it all in that department. Up to 20% of us don't show up.

I used to suffer from migraines a lot. Even when I didn't have the headache I would get the 'auras' on a daily basis. I have been gluten-free now for 5 years and can't remember when the last time I had a bad migraine was. I will still get a mild one if glutened but nothing like it used to be.

[dally099]

hi there, i tend to take a few days to get gastol issues from the gluten, but the first thing that i do get withing 20 min is the headache, that annoying peircing headache and thats how i know what i ate has gluten in it. some people with celiac suffer more with the neurological stuff then they do their stomachs.

[ADevoto]

I am interested in your child that is Aspbergers (sp?). I also have a son that has been dx with high functioning autism. He is a twin and both of them have had blood tests. All negative but positive genes and lot of symptoms. Can you tell me about your child?

[Nancym]

Lots of people have gone gluten free after having failed blood tests, and felt MUCH better. Obvious to us, if not doctors, that the blood tests are defective.

The Renegade Neurologist has articles about gluten and migraine headaches, plus I've personally read lots of stories here about people curing their migraines.

Open Original Shared Link

Why not try the diet? Other than pain what's to lose?

[tarnalberry]

Regardless of the blood tests, if you have the symptoms, do the test of the gluten free diet. You may find it helps. It might be celiac at a subclinical level that isn't getting picked up on your tests, or it might be something else. But trying the diet for two or three months, compared to a lifetime of symptoms and problems, isn't so bad.

As for the migraines... Some people find that they improve or go away on a gluten free diet entirely and some don't. Mine didn't - and got worse when I moved to the PacNorthWest. (I think they're related to barometric pressure, if anything at all, for me.) I ended up going for a daily preventative (Topamax) and it works quite well, but I had already been gluten free for over two years, dairy free for more than a year, and had tried eliminating other potential triggers such as caffeine. Some others, however, find that there is an environmental or food trigger that they can identify and remove from their lives, and sometimes it's as simple as gluten.

[ravenwoodglass]

I am interested in your child that is Aspbergers (sp?). I also have a son that has been dx with high functioning autism. He is a twin and both of them have had blood tests. All negative but positive genes and lot of symptoms. Can you tell me about your child?

All I can say is I wish we had known sooner with him and the entire family. He struggled so much as a child. He still has some problems as a young adult, but now they are more to do with never having learned how to socialize. He is high functioning, really would be clasified more as an Aspergers type, but most of the members of my family would also fit this. With him it was more pronounced though and involved OCD type behaviors, depression and learning difficulties that had nothing to do with IQ. He had a lot of stomach and skin problems but, like with me, they were put off as 'nerves' related to the depression episodes or not wanting to go to school. That was the case with both my kids.

On the gluten free diet the stomach and skin problems and the depression are a thing of the past along with the OCD and learning problems. He is much more social although he is still uncomfortable with crowds. His teen years would have been very different if he had not had to struggle with the effects of gluten poisoning. He did show a low positive on blood tests at 19 but had already suffered severe irreversable growth stunting and a great deal of damage by this time.

[Felidae]

This is basically the same thing that the above posts stated, but I'll add to them anyways.

I was "diagnosed" with IBS. I was sick most of my life and in my early thirties I had enough. My bloodtests were both negative for celiac. But, I don't even know if the full blood panel was run. I gave the gluten-free diet a try and I have been feeling great ever since. Going gluten free won't hurt you, but it very well may help you. I think it is worth giving it a try for your health. You may feel wonderful or you may feel no different. But at least if you try it, you can say, I've tried everything to try and feel better.

My migraines minimized by about 75% after I went gluten free. So, instead of having one every month, I have one only a few times a year.

[LynneM]

Migraines were the clue which lead me to celiac. I stopped eating gluten and the migraines went away, then had a blood test which came back negative. But I recently was tested positive through enterolab, so I would suggest trying a gluten-free diet and see if the migraines stop.

[RiceGuy]

I am interested in your child that is Aspbergers (sp?). I also have a son that has been dx with high functioning autism. He is a twin and both of them have had blood tests. All negative but positive genes and lot of symptoms. Can you tell me about your child?

Sounds like you aren't the only one in your family that should try the gluten-free diet. I honestly don't understand why people are so hesitant to try it. It's not like you'd be giving up anything all that important, nor are gluten-filled foods irreplaceable. Sure, gluten isn't the easiest thing to avoid, but a gluten-free diet sure beats all the pain and suffering.

Please do try, not only for your own sake but for your family. And do let us know what happens. You have the support of the many fine members of this board.

[sparkles]

Just wanted to add my 2 cents about migraines and celiac disease. I sufferED (NOTE the past tense) from migraines for years and years and years. I had up to 3 migraines a WEEK sometimes. The normal migraine medicine did not help. As I got older the migraines lessened to 1 every week or two but at 55, I was still experiencing them. I went gluten-free in June of 2002 and have NOT had a migraine since a month after going gluten-free. I haven't even had a severe headache in that time. I can eat the things that used to trigger migraines.... chocolate, aged cheeses, wine... with NO problems! Even if all the stomach distress had not gone away with the decision to go gluten-free, certainly the elimination of the migraines would have made the decision to be gluten-free worth it. Go with your GUT, so to speak and even if the docs don't see the need to be gluten-free, it is your body and ultimately, you have the right to control what goes on with it. With one celiac marker, it might be worth it to try a gluten-free diet for a few months just to see what happens!!!!!

[sunshinen]

When I was diagnosed I was having migraines everyday that responded to none of the meds. Now I only get them when I make a gluten mistake.

[Felidae]

Just wanted to add my 2 cents about migraines and celiac disease. I sufferED (NOTE the past tense) from migraines for years and years and years. I had up to 3 migraines a WEEK sometimes. The normal migraine medicine did not help. As I got older the migraines lessened to 1 every week or two but at 55, I was still experiencing them. I went gluten-free in June of 2002 and have NOT had a migraine since a month after going gluten-free. I haven't even had a severe headache in that time. I can eat the things that used to trigger migraines.... chocolate, aged cheeses, wine... with NO problems! Even if all the stomach distress had not gone away with the decision to go gluten-free, certainly the elimination of the migraines would have made the decision to be gluten-free worth it. Go with your GUT, so to speak and even if the docs don't see the need to be gluten-free, it is your body and ultimately, you have the right to control what goes on with it. With one celiac marker, it might be worth it to try a gluten-free diet for a few months just to see what happens!!!!!

You are so lucky. I still can't eat my trigger food without getting a migraine even since being gluten-free. I still have hope that one day I'll be able to eat it again. LOL

[grey]

When I was diagnosed I was having migraines everyday that responded to none of the meds. Now I only get them when I make a gluten mistake.

Sunshinen,

Did you even try the daily preventitive meds? My migraines are only partially controlled and untill after I got my positive ttg, I had no idea that celiac had migraines as a possible symptom. I'm going to the g-i specialist tomorrow for consult; I'm really nervous - I'm hoping he'll say it's definately celiac, everything's related, go buy stock in rice flour!

I'm really hoping that when I go Gluten-free I'll have a response like yours.

You give me hope.

To ADevoto, I hope things got better for you since the end of April!

[grommet]

I still have a nagging feeling that it is all related even though the doctors tell me no way.

Any thoughts. Anyone else have severe migraines?

I have suffered with migraines for 30 years and they have always been assoicated with my month cycle. They have made my life a bloody misery. Over the last few years other things have got much much worse - I associated everything with the onset of menopause.

Finally, in despair, I started keeping a food diary and realised that first wheat, then gluten was causing a problem. This was 2 years ago and although I have had all the tests and am not diagnosed coeliac - apparently theres nothing wrong with me :-) even though I am ultra sensitive and get gastro and neuro symptoms when eating a v small amount of gluten. Anyway I decided I would follow a gluten-free diet. the difference is amazing - I have my life back. I only now get a migraine when I have acidentally eaten gluten. I can feel my body trying to have one - frequent trips to the loo, hightened sensitivity to noise and smell, pulsing in the head but I don't actually get the pain.

Doing the six week challenge was a nightmare - not for the gastro symptoms because I can cope with those, but for the debilitating tiredness, and if unable to go to bed to sleep, repeated migraines.

Give yourself a chance and try the gluten-free diet. It is hard work at first but you will get used to eat, and if it improves the migraines then it's worth it.