Trying Gluten-Free For Migraine Relief; Have A Question, Please.

[Tiskers]

Hi, newbie here. Looks like I found a great forum!

I have had migraines since I was a teen. Had all the standard work-ups, MRIs, etc., with all the standard prescribed meds. Nothing has been very effective in treating the migraines, which can be crippling at times.

My sister recently ran across research indicating that a wheat/gluten-free diet can help prevent migraines in some people, and I thought I would try it for a month or so to see what happens. Well, I am on Day #10 -- and not one headache so far! Very exciting!

Now for my question. My local health food store herbalist told me that he wonders if in some people (who are not "true" celiacs) it may be the contaminates, chemicals, pesticides, etc., inherent in (traditional) growing/harvesting of wheat that people can be sensitive to - rather than the actual wheat itself. Does anyone know anything about this?

And if this is true, then perhaps I could eat organic wheat products? Or products I make myself with organic (wheat) flour?

Thanks in advance for any assistance or insight(s) you guys may have!

Lynn

[ravenwoodglass]

I also have never had a migraine since I went gluten free. As to what your freind stated, well personally I don't buy it. If you do question it though stay gluten free for a few more weeks and then do a gluten challenge for a week or two with the 'organic' wheat products. I would be willing to bet the migraines come back.

[Jestgar]

Now for my question. My local health food store herbalist told me that he wonders if in some people (who are not "true" celiacs) it may be the contaminates, chemicals, pesticides, etc., inherent in (traditional) growing/harvesting of wheat that people can be sensitive to - rather than the actual wheat itself.

You would expect the same contamination in everything we eat then. There's no reason to assume it only happens in wheat.

[Tiskers]

Thank you so much for the replies! You guys make some good points.

I am so happy to have found this forum!

[Pac]

You would expect the same contamination in everything we eat then. There's no reason to assume it only happens in wheat.

exactly, other crops are grown the same "traditional" way. I bet there are people who do get migraines from all the poison in food, but those won't get relief from just gluten-free diet alone.

As for the migraines, I do cross-react to rice, including rice flour or vapour from boiling rice/rice pasta. On the other side I'm pretty sure barley makes me "glutened" but doesn't cause migraines. (the only official diagnose I have is allergy to gluten/gliadins)

[Tiskers]

exactly, other crops are grown the same "traditional" way. I bet there are people who do get migraines from all the poison in food, but those won't get relief from just gluten-free diet alone.

As for the migraines, I do cross-react to rice, including rice flour or vapour from boiling rice/rice pasta. On the other side I'm pretty sure barley makes me "glutened" but doesn't cause migraines. (the only official diagnose I have is allergy to gluten/gliadins)

So, there's nothing (pesticides, fungicides, etc?) specific to, and inherent in, the traditional wheat crop ONLY then? That's what I am wondering.

And what does "glutened" mean? Please forgive, I am just learning. And there is so much to learn!

Thank you!

Lynn

[AerinA]

I had migraines since 4th grade. I've been gluten free a month, I've only had one and was able to cure it with a single dose of excedrin, without even lying down, and it didn't come back later. I agree that re-introducing gluten free wheat *might* help you to know for sure, but pesticides and fertilizers and the other chemicals that are used by farmers do tend to get everywhere, between being sprayed and being blown around to being spread via run-off, I don't see that there is any way to keep what specific chemicals (if there are such things) only on wheat fields... if there is a corn farmer next door, that corn would probably get stuff on it as well. Migraines are only one thing the gluten free diet has fixed for me, and it's only been a month--you might find that you feel much better and it's worth it to keep on the diet.

[ravenwoodglass]

So, there's nothing (pesticides, fungicides, etc?) specific to, and inherent in, the traditional wheat crop ONLY then? That's what I am wondering.

And what does "glutened" mean? Please forgive, I am just learning. And there is so much to learn!

Thank you!

Lynn

'Glutened' is the term we use to describe the reaction that we get from gluten in our system after being gluten free.

If you think that it is something that is sprayed onto non-organic wheat that you have an issue with (and I seriously doubt this is the case) then go gluten free, avoiding wheat, rye, barley and oats, for a couple of months and then eat some organic wheat 3 times a day for a week. Your reaction, if you have one, should be obvious.

I would also question the expression your freind used 'true celiacs' what is he defining a 'true celiac' as? Some of us are impacted in different organs other than the gut and they are sometimes referred to as gluten intolerant instead of celiacs but they still need to be just as strict with the diet as both are an antibody reaction.

[Tiskers]

I don't think the herbalist meant any harm when he used the word "true" celiac. I took what he said (and how he said it) as his just trying to compare someone with severe symptoms who absolutely KNOWS that gluten negatively impacts their health (possibly in multiple ways) vs someone "like me", who is just TRYING gluten-free, to see if it makes a difference in one particular area of my health (migraines).

But I do see what you're saying. Is there a better way to phrase it? If going gluten-free does continue to make a difference for me (and now I am on Day #12 w/o a headache!) would I be considered celiac or gluten-intolerant?

Thank you very much.

[AerinA]

I don't think the herbalist meant any harm when he used the word "true" celiac. I took what he said (and how he said it) as his just trying to compare someone with severe symptoms who absolutely KNOWS that gluten negatively impacts their health (possibly in multiple ways) vs someone "like me", who is just TRYING gluten-free, to see if it makes a difference in one particular area of my health (migraines).

But I do see what you're saying. Is there a better way to phrase it? If going gluten-free does continue to make a difference for me (and now I am on Day #12 w/o a headache!) would I be considered celiac or gluten-intolerant?

Thank you very much.

The way to officially "diagnose" celiacs is with blood work and/or a biopsy, lots of people who post on this forum (including me) couldn't get an official diagnosis. I just know I feel 100% better almost as soon as I cut gluten out of my life, so whether I'm "celiacs" or "gluten intolerant" doesn't matter, I just know I'm never eating wheat again if I can help it. The tests give a lot of false negatives, also. Even so, if your doctor told you that there was absolutely no chance that you have celiacs, but the gluten free diet fixes your migraines... would you start eating wheat again? I'd guess probably not. Lots of people don't understand gluten intolerance because they can't imagine that something so seemingly basic to most people's diet could make us feel so terrible, but for whatever reason, it just does. In the end, the decision is yours.

[Kate79]

Hi, newbie here. Looks like I found a great forum!

I have had migraines since I was a teen. Had all the standard work-ups, MRIs, etc., with all the standard prescribed meds. Nothing has been very effective in treating the migraines, which can be crippling at times.

My sister recently ran across research indicating that a wheat/gluten-free diet can help prevent migraines in some people, and I thought I would try it for a month or so to see what happens. Well, I am on Day #10 -- and not one headache so far! Very exciting!

Now for my question. My local health food store herbalist told me that he wonders if in some people (who are not "true" celiacs) it may be the contaminates, chemicals, pesticides, etc., inherent in (traditional) growing/harvesting of wheat that people can be sensitive to - rather than the actual wheat itself. Does anyone know anything about this?

And if this is true, then perhaps I could eat organic wheat products? Or products I make myself with organic (wheat) flour?

Thanks in advance for any assistance or insight(s) you guys may have!

Lynn

I wouldn't chance the organic wheat. I, too, had migraines my whole life before going gluten free in September. Since then, I've only had three headaches total - and they're all from eating something that was contaminated with wheat, including 100% organic salad dressing.

I don't have an 'official' celiacs diagnoses, as I stopped eating gluten without having a biopsy. I did have positive blood work and a positive genetic test. You could look at having these done to rule out celiacs. My GI told me that if you feel better without wheat, than you're probably gluten intolerant even if you don't have celiacs. If you feel better without the gluten, then you should keep it up!

[Fire Fairy]

Another Migraine sufferer here. I have had far less and less severe Migraines since going gluten-free in November. I was having up to 18 days of Migraine per month, 4 months gluten-free I've had a total of 8 days of migraine all of which were from accidental gluten consumption (I think).

[EdwardL]

I wouldn't chance the organic wheat. I, too, had migraines my whole life before going gluten free in September. Since then, I've only had three headaches total - and they're all from eating something that was contaminated with wheat, including 100% organic salad dressing.

I don't have an 'official' celiacs diagnoses, as I stopped eating gluten without having a biopsy. I did have positive blood work and a positive genetic test. You could look at having these done to rule out celiacs. My GI told me that if you feel better without wheat, than you're probably gluten intolerant even if you don't have celiacs. If you feel better without the gluten, then you should keep it up!

Don't take the migraine headaches too lightly. My wife had headaches for years before going off gluten, which stopped the headaches. However, she was recently diagnosed with frontal lobe dementia, with memory and cognitive loss. Her headaches were in the front of her head, and could last several days. She is in mid-60's. These intolerances will only get worse with time, and abstinence is the only known cure.

[ravenwoodglass]

Don't take the migraine headaches too lightly. My wife had headaches for years before going off gluten, which stopped the headaches. However, she was recently diagnosed with frontal lobe dementia, with memory and cognitive loss. Her headaches were in the front of her head, and could last several days. She is in mid-60's. These intolerances will only get worse with time, and abstinence is the only known cure.

Welcome to the board Edward. How long ago was your wife diagnosed? If she has only been gluten free for a short time know that she may improve on the diet. It can take a long time and progress can be slow but many of us have had cognitive improvement and I hope she does also.

[EdwardL]

Welcome to the board Edward. How long ago was your wife diagnosed? If she has only been gluten free for a short time know that she may improve on the diet. It can take a long time and progress can be slow but many of us have had cognitive improvement and I hope she does also.

We just recently went to a Neurologist. The good news is she apparently does not have alzheimers. She has generally not eaten gluten for many years based on her experience of getting headaches. But we we're really strict until the last couple of months. We use a digestant (Spectrum Digest) when we eat out as a precaution. Seems to help.

We got more religious because of her problem and after I found about 20 articles on neurological damage caused by gluten intolerance. Many of the articles are found in the BLOG section of this web site. I am absolutely convinced that gluten is a factor. However,it may be a necessary but not sufficient condition.

Although the strict gluten diet has helped, there were still periods where she would wake up confused and it seemed she was still slipping. But on further reading, I find that the dairy protein casein has a very similar molecular structure to gluten and can cause the same neurological damage. She is also lactose intolerant and does not eat alot of dairy, but again was not strict. We just this past week went on a casein free diet as well, and I'm happy to say so far she is doing better. This is the diet they use for ADHD children.

The perfect storm for her is a pizza with bread crust and cheese topping. Had we known about the neurological connection, we would have long ago approached the problem more seriously and scientifically. We started noticing a decline about 4 years ago. It is sad that most doctors are not aware of the neurological connection, or of Celiac disease at all. We would still not be aware had we not done our own research. This web site was very helpful.

There is a "Food Intolerance Syndrome" epidemic that can probably explain many of today's Metabolic Syndrome problems. Again, everyone should be deadly serious about finding the cause of the migraine headaches.

[EdwardL]

Neurological Damage

These are interesting facts from Dr. Ford's website Open Original Shared Link

Brain and nerves can be harmed by gluten

Did you know that:

-Over half of celiac have some neurological symptoms from gluten

-Many un-diagnosed neurological diseases have been attributed to gluten

-Headaches and migraines can be triggered by gluten

-ADHD can be a gluten symptom

-Depression and agitation can be caused by gluten sensitivity.

[catsmeow]

First off, I love your user name and cat avatar. Many years ago, I had a beloved cat that looked just like your avatar. Her name was Twiskers!!

Gluten free has cured my migraines. I had them 5 out of 7 days a week.

I agree with the others and don't think chemicals on the wheat have anything to do with migraines and wheat. I think it's just wheat and gluten in wheat that does it. I have no problem with other grains....

[AerinA]

Just to update, I have had exactly ONE headache since I started my gluten free diet (post-withdrawal, at least,) that interrupted my day-to-day activities. I was getting them several times each week before I went gluten free. Other neurological issues have also improved, but by far the most significant change is the lack of migraines. It is liberating!!

[wheeleezdryver]

Just to update, I have had exactly ONE headache since I started my gluten free diet (post-withdrawal, at least,) that interrupted my day-to-day activities. I was getting them several times each week before I went gluten free. Other neurological issues have also improved, but by far the most significant change is the lack of migraines. It is liberating!!

That is AWESOME!!!

[frieze]

We just recently went to a Neurologist. The good news is she apparently does not have alzheimers. She has generally not eaten gluten for many years based on her experience of getting headaches. But we we're really strict until the last couple of months. We use a digestant (Spectrum Digest) when we eat out as a precaution. Seems to help.

We got more religious because of her problem and after I found about 20 articles on neurological damage caused by gluten intolerance. Many of the articles are found in the BLOG section of this web site. I am absolutely convinced that gluten is a factor. However,it may be a necessary but not sufficient condition.

Although the strict gluten diet has helped, there were still periods where she would wake up confused and it seemed she was still slipping. But on further reading, I find that the dairy protein casein has a very similar molecular structure to gluten and can cause the same neurological damage. She is also lactose intolerant and does not eat alot of dairy, but again was not strict. We just this past week went on a casein free diet as well, and I'm happy to say so far she is doing better. This is the diet they use for ADHD children.

The perfect storm for her is a pizza with bread crust and cheese topping. Had we known about the neurological connection, we would have long ago approached the problem more seriously and scientifically. We started noticing a decline about 4 years ago. It is sad that most doctors are not aware of the neurological connection, or of Celiac disease at all. We would still not be aware had we not done our own research. This web site was very helpful.

There is a "Food Intolerance Syndrome" epidemic that can probably explain many of today's Metabolic Syndrome problems. Again, everyone should be deadly serious about finding the cause of the migraine headaches.

PLEASE! Vitamin B12 def. should be a differential diagnosis for dementia!

the blood testing is of poor quality, supplementation is not expensive, good luck!

[Tyson Holly MD]

I am a doctor and had severe migraines since puberty, where I have to give myself injections and I've been hospitalized twice. I realized that both times before hospitalization, I had a GI bug that I thought I'd caught from work. Now I KNOW that it was a gluten flare. I too got headaches 4-5 times a week. And I thought they were related to insulin levels bc I was always hypoglycemic and a high carb meal often brought it on. I am so relieved to know now why I was suffering all those years. I have had one severe migraine and a few minor headaches since being self diagnosed (after five weeks in the hospital) but they are so easy to treat now. One medicine dose and gone! And it's always when I'm contaminated ( my word for glutened!)

[AerinA]

I am a doctor and had severe migraines since puberty, where I have to give myself injections and I've been hospitalized twice. I realized that both times before hospitalization, I had a GI bug that I thought I'd caught from work. Now I KNOW that it was a gluten flare. I too got headaches 4-5 times a week. And I thought they were related to insulin levels bc I was always hypoglycemic and a high carb meal often brought it on. I am so relieved to know now why I was suffering all those years. I have had one severe migraine and a few minor headaches since being self diagnosed (after five weeks in the hospital) but they are so easy to treat now. One medicine dose and gone! And it's always when I'm contaminated ( my word for glutened!)

I think the best thing about it is when you do something that used to trigger a headache -- like, for me, going out in the sun without my sunglasses -- and then remembering that it isn't going to hurt I appreciate everything so much more because of it!! I would never say I'm glad I had such awful migraines for so long, but I will never take not being in pain for granted. Thinking of going to the beach this summer! So glad the gluten free diet worked for you, I wish more people knew about all the good it can do!