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SGWhiskers

Headaches

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Dispite strict adherance to the gluten-free diet, I'm still getting almost daily afternoon headaches. They are not quite migraines, but respond partially to imitrex if I need to take something to get through the day. The headaches are more pain, confusion, stiffness, and tension through my neck and shoulders and it lasts all through the evening. I keep telling the docs, but I'm getting the "it's not ...insert speciality..." or "lets focus on ...insert symptom..."

It seems to come and go in phases, and might be tied to any number of things.

menstural cycle

eating lunch

taking daily cymbalta dose

being in the building while the cafeteria cooks/serves lunch

going to radiology (my contrasts are gluten-free)

the alignment of the moon, stars, and leprachauns

hydration

salt

maltodextrin

hot apple pie in the room

Some days I'm feeling fine then WHAM the pain starts all at once. Other days, it kind of creeps up on me over an hour or so. I swear I have another disease they can't find. Actually, I hope so, because if this is how I'm supposed to feel for the rest of my life, I'm not going to be able to keep a job or have kids.

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Dispite strict adherance to the gluten-free diet, I'm still getting almost daily afternoon headaches. They are not quite migraines, but respond partially to imitrex if I need to take something to get through the day. The headaches are more pain, confusion, stiffness, and tension through my neck and shoulders and it lasts all through the evening. I keep telling the docs, but I'm getting the "it's not ...insert speciality..." or "lets focus on ...insert symptom..."

It seems to come and go in phases, and might be tied to any number of things.

menstural cycle

eating lunch

taking daily cymbalta dose

being in the building while the cafeteria cooks/serves lunch

going to radiology (my contrasts are gluten-free)

the alignment of the moon, stars, and leprachauns

hydration

salt

maltodextrin

hot apple pie in the room

Some days I'm feeling fine then WHAM the pain starts all at once. Other days, it kind of creeps up on me over an hour or so. I swear I have another disease they can't find. Actually, I hope so, because if this is how I'm supposed to feel for the rest of my life, I'm not going to be able to keep a job or have kids.

I would suggest that you seek out a consultation with a knowledgeable dietician (who is well educated on Celiac Disease) and they will evaluate/test you for possible vitamin and nutrient deficiencies. I am in the process of taking a test called an Organic Acids test and am anxious to discover what areas I am deficient, so I can work on correcting them asap. Conventional blood labs (i.e. what a conventional doctor orders..like a Quest or Labcorp blood lab) are NOT an accurate indicator of your true vitamin and mineral levels. A comprehensive Organic Acids test will evaluate over 60 areas including magnesium, calcium, vitamin D, B vitamins, yeast, amino acids, metabolics, etc. A magnesium deficiency can cause many symptoms including headaches, body aches and periodic limb movement (myoclonus) (which is what I have been dealing with for almost three years!!.

Best of Luck,

SylviaAnn :)

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Dispite strict adherance to the gluten-free diet, I'm still getting almost daily afternoon headaches. They are not quite migraines, but respond partially to imitrex if I need to take something to get through the day. The headaches are more pain, confusion, stiffness, and tension through my neck and shoulders and it lasts all through the evening.

I am not prone to headaches but I respond to your compaint of the pain, stiffness and tension in your neck. I have revieved most of this by increasing my magnesium intake. I read the book "The Miracle of Magnesium" by Carolyn Dean, MD. It talked about the many problems caused by magnesium deficiency and migraines was one.

My friend's son missed nearly all of the last two years of school due to migraines. She has had him to all kinds of specialists with no help except bringing to their attention sinus infections. She was finally at the end of her rope. I asked if she was ready to try the treatment we had started the year before and extend it. She was, she just didn't know what else to do for this previously vibrant young man. The year before, she had him on Migralief, a natural treament for migraines that I had read about in a dr's column in the newpaper. This gave him several month's of relief, then seemed to stop working. In hindsight, at that time he developed a strong sinus infection that no dr seemed to notice until the fall.

I told my friend that I thought her son's migraines were caused by several factors; muscle tension, sensitive sinuses, food allergy and vitamin deficiancy. I know I am not a dr but my daughter has some of the same problems. I had just read the book on magnesium and her husband and son seemed to fit some of the medical conditions described in the book. I let her read the book too. For migraines it recommended to eliminate food allergens (for him, dairy), add magnesium, B vitamin (I think B6 & B12), feverfew and I think that is all. The Migralief contains most of those so she just had to add more magnesium and B12. That provided him a large amount of relief. However, on rainy days, his sinuses would suffer and he would start the headache cycle again.

I saw a story on the news about a girl like him and her migraines were relieved by a nasal spay. We looked it up but his mother didn't want him to be on powerful drugs. We found one called Sinus Buster that was made of natural ingredients. A local chiropractor carried it. This has been the last key to the puzzle for this boy. He's back to his old self! He can go to school. work in the yard and participate like he used to. On those rainy days, his headache will start up again but the nasal spray will make it back down. The supplements are doing what none of the drugs could touch and with no side affects!!

I would bet you would be helped by some of these same products. I was really amazed how the magnesium helped that neck problem for me. I hope you find relief.

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as you've noted that they include neck tension, are they related at all to using the computer or driving? (or sitting in a chair and reading, or something else)

a *lot* of headaches can be related back to posture. either from a forward head position putting a lot of strain on the neck, or high shoulders tensing the upper traps placing tension on the scalp muscles, or upper back posture... the list goes on and on.

have you tried seeing a chiropractor, osteopath, or the like?

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Good ideas from others. Just wish to add: Have you tried an elimination diet to see if you're intolerant to other foods than gluten ?

For the last six years, I've suffered from terrible debilitating headaches with neck stiffness and often vomiting. After starting on the SCD five months ago, I've been able to identify which foods trigger the headaches - presently all grains, dairy, sugar, eggs and meat - and hopefully when I heal more, fewer foods will be problematic. And at least, for now I know what to avoid if I want to feel well.

Might be worth a try ...

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Have you had you B12 or Vit D tested...they both will cause headaches when deficient...as will low iron. It seems we gluten intolerant/celiac people need higher levels of vitamins than the average person. Most of my levels are just inside the "normal range", which doesn't necessarily mean I can do ok with my levels that low.

Last June, my neuro did a complete blood work-up on me...26 vials of blood! :blink: My ferritin level was only 26 (20 being anemic), my iron level was 61, with the range being 40-160. He told me everything was fine, don't worry about it. My Vit D was only 26, optimum being 50...don't worry. I did add Vit D to my regiment, but hadn't done anything about the ferritin. This May, he had my ferritin, Vit A, and a antibody test done for neuropathy. This June, he tells me my ferritin is 22, and maybe we should do ferritin IV's. I asked why iron tablets wouldn't work, he tells me they do not work fast enough. Well, what's his hurry, he let me go an entire year with low ferritin!!! For now, I am taking an iron tablet recommended by Dr. Stephen Wangen, the Gluten Free Doctor. In August, I will have my PCP do some more testing and see where I am.

I totally relate to the headaches. I have one all the time, never goes away. My neuro always asks me, when does the headache start...I told him, I have it when I go to bed, and it's there when I wake up, you tell me when it starts!!!

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B12, D, and magnesium deficiencies, as noted above, can all contribute to headaches. If you have been gluten-free for a significant period of time, your intestines might have healed, so theoretically, you should not have absorption problems. However, if you have been on acid-blockers (like Prilosec, for example) for more than a couple of months, that is listed on the B12-deficiency sites as being a prime cause of B12-deficiency.

I mention this because acid reflux is a very common symptom of celiac, so many of us here were being treated for it with long-term use of acid-blockers. Once you are taking acid-blockers for a long period of time, there is a very strong rebound effect when you try to quit taking them. This, of course, can give you the false impression that you really need the acid blocker, when in reality, you just need to wean off instead of quitting cold turkey. I have not yet met a doctor who is aware of this, and it's NOT listed on the package insert as a potential problem.

Another over-the-counter medicine with a strong rebound effect is ibuprofen. If you take it constantly, then when you stop taking it, you can get a rebound headache that's worse than the original headache.

I'm not sure if Imitrex and the other migraine meds have the same effect, but if you google around to find headache forums, there are probably people there who would know.

Low-sodium diet, caffeine, and hydration are mentioned on some of the Meniere's Disease sites--headache is not usually considered a symptom of Meniere's, but some of the neuro symptoms associated with Meniere's are referred to as "aural migraine," so it may all be related.

I seem to remember reading about dairy causing headaches for some people, but can't remember if that was on this forum or not. Many celiacs do have other food intolerances, so that might be worth looking into.

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Thank you for all the suggestions. I'll be keeping an eye on all of those items. I'm not sure where to start first, but today, the headache is taking a vacation, so I will be paying close attention when it starts up again.

I was PMSing and feel my worst the week before and after my period, so that is on my suspicion list. I started my B12, D, and Magnesium again only to trigger the stomach pain again. Back off the vitamins for the past few days. It looks like that stomach pain was from a possible GI bleed because my poop went black again. (happens every once in a while for a few days. ) I don't take prilosec, although I have a script. None of the doc's beleive me when I say it can cause b-12 deficiency, and I suspect that one of my problems. I'll be adding one vitamin at a time once my poop goes back to it's normal color.

I don't know about Imitrex causing rebound headaches. It usually seems to have the opposite effect with me. It will sometimes break a pattern of chronic headache for a while. I think that might have been what happened this time because I took it for a few days, with increasing length of relief each time.

Salt: It seems to fix my headaches, but not always. I have low blood pressure, and lots of hydration and salt seems to make me get through the days better.

SCD: I'm seriously thinking about it this time. I stopped eating much for breakfast and lunch the past few days, and feel Sooo much better. Who the heck knows the reason. I'm SURE I'm not getting gluten unless it is in something that is supposed to be gluten free. I've had allergy testing for the big 8, but I'm giving more weight to the idea of an elimination diet.

I also ran out the door at work on Friday because I smelled baking gluten in the hospital cafeteria. Not good for my productivity, but I didn't inhale anything bad. Speaking of inhaling, I think I'm accidentally growing marajuana in my garden. A weed that looks like the pics on the internet popped up in an untended area of my garden. I don't know whether to laugh at it, fertilize it, or pluck it. Right now, I'm laughing at it.

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I started my B12, D, and Magnesium again only to trigger the stomach pain again.
Are you sure they are gluten free? Magnesium can cause stomach issues. I take Jarrow Methylcobalamin B12, and I take Spring Valley D-3 (Walmart), and have issues with neither. When I first started taking B12, it did bother my stomach. If your B12 is cynacobalamin, it is harder to digest and could be causing a problem...methylcobalamin is much better for you. There also are several different types of magnesium, and some are of little value. I do know that mag oxide is the worst one to take, and mag glycinate is one of the best (least amount of stomach trouble).

Good luck with the headaches, I can't seem to find the answer to mine, nor has my 3 doctors.

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