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Feeling Like There Is Not Much Light At The End Of The Tunnel...


CR5442

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IrishHeart Veteran

So far all I have for real proof for now is the article here on celiac.com by Vicky Pederson that I listed earlier. She based her statement on some research from somewhere and it may be what the person was referring to on U tube last year, since Dr. Pederson wrote a book about celiac, including the topic of depression. I am thinking maybe I should either read the book or contact her to get her source. She is local to my area.

This is the chiropractor who wrote the Gluten Effect, I believe?

She also subscribes to the theory of "cross-reactivity" which has been hotly debated here. Unfortunately, there is no proof for that theory as it pertains to various food proteins "mimicking the gluten" in our bodies. There is an entire thread devoted to that on here.

Basing statements "on some research somewhere" and videos on YOUTUBE are not convincing to most of us.

With all due respect, this is very important when presenting information to newly diagnosed people as a reason for continuing symptoms.

Her book is not about celiac specifically, but about how she treated patients in her practice for various symptoms --with great success, she tells the reader--by suggesting a gluten free diet and various supplements. (I read her book.)

I am not sure how this is relevant to the gluten / carotid arteries claim.

Best wishes,

IH

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CR5442 Contributor

In answer to the questions on cerebral blood flow, Bea you are right. There are a number of articles on BMJ which talk about hypo-perfusion to the frontal cortex and some parts of the temporal lobe due to the histamine triggered by an allergic/autoimmune response... in this case gluten. There are studies on Schizophrenia, OCD, bi-polar and other seemingly independent conditions which have shown connections with ingestion of gluten. I'm thinking of sending these papers to my husband as his uncle has severe schizophrenia, triggered by a bad dose of tetanus (the vaccine) about 50 years ago.

Here are some paper titles:

Neurologic Disorders in Patients With Celiac Disease: Are They Mediated by Brain Perfusion Changes?

Regional cerebral hypoperfusion in patients with celiac disease

Gluten encephalopathy with psychiatric onset: case report

Nicola Poloni*, Simone Vender, Emilio Bolla, Paola Bortolaso, Chiara Costantini and Camilla Callegari

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Ninja Contributor

Maybe the brain damage isn't caused by the gluten itself, but by unknown vitamin/mineral deficiencies caused by gluten ingestion. I presume the studies differentiated between the two but I figured it was something to put out there... I know I've read about deficiencies in vitamin b12 causing neuropathy

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Skylark Collaborator

It's been about 8 months since I stopped eating gluten. Since then I feel like I've been on a see-saw of one day feeling good, the next bad. Whilst overall I think my gut is improving there are other things that are taking its place. Every bug going around I seem to get. Flu, colds, and recently proper gastroenteritis to the point I couldn't eat anything for three days.

I'm being treated herbally for andrenal exhaustion, hormone issues etc. but I never feel like I get through one week where everything seems to be improving. Right now my liver feels congested... again.

Does anyone have any words of encouragement about timescales till you really start to see a difference in general overall health and feelings of wellbeing. Like another person who posted on here recently, I think depression would be a good way of describing this. A feeling like as soon as I fix one thing, another gets broken. And that isn't just in my health, also in my life too. I'm trying to let go as much as possible and let things take their own course, but feel completely trapped in a life circumstance that I have zero control over, am just reaping the consequences, which means I'm constantly tired and stressed.

Sorry, bit of a spill over there.

I hate to tell you this but that trapped feeling could be the source of most of your issues. Stress has a profound effect on both autoimmunity and your resistance to illness. It can directly cause depression too - look up "learned helplessness". And of course your adrenals aren't working well in a chronic stress situation! Remember that too much cortisol is almost more likely than too little, and high cortisol directly causes depression. Unless you had an abnormal 24-hour salivary cortisol test, the herbs you are taking for adrenal fatigue (assuming that such a thing even exists which is questionable) may be pushing you in the wrong direction.

I am finding acupuncture helpful for depression. You could also try some of the milder remedies like 5-HTP or St. John's wort (either/or, not both, and not if you're on a prescription antidepressant). It's tremendously important to get enough B-complex in a high-stress situation becasue you will use up your reserves. If you tolerate citrus, have an orange a day for the natural vitamin C too. Make sure you are getting enough omega-3 fatty acids for proper immune function. A couple fish oil capsules a day can work wonders for your state of mind. Also ask your doctor about vitamin D testing as low D can make you feel worse and lower immune function.

Sometimes doing little things for yourself can make a difference. Buy flowers, have a nice soak in a hot epsom bath, get a massage (particularly helpful as it will release some endorphins), or splurge on something small that makes you happy. My favorite little treat is an expensive bar of super-fragrant soap for my morning shower.

You must exercise, no matter how tired you are. Get out of the house and take a 15 minute walk every day, ideally after dinner so it helps your digestion. If you crank up the pace and walk quickly or jog, you will get more endorphins into your system but I know how hard moving fast is when you are tired. Even a moderate paced walk will help.

While you do this, look at how you can get out of the trap. Remember that whenever God closes a door, he opens a window. It may be that the solution will present itself if you can treat yourself kindly and clear your head for a bit. :) If you can get clear of the stress you may find all these health problems melt away. (You wouldn't believe how sick some Ph.D. and medical students get - this is how I know about the effects of chronic stress on health.)

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Kim69 Apprentice

It's a long road to recovery for us coeliacs. I agree ditch the herbs. To the shock of my naturopath I couldn't tolerate any of her treatments that I needed to swallow. I gave up on her for a while but she dx me with blastocystis which is a parasite. A course of dr prescribed flagyl cleared that up. I had nausea and D for about 1 yr before the $10 course of tablets. Ah sweet relief!

I still have lots of problems almost 2 yrs after dx. I was dx with fibromyalgia 6 or so months ago. I still have depression that I was hoping would go away after going gluten-free (I am on AD which works very well). I have had to halve my working hours. I have sensitivity to lots of foods and am on a diet too now to lose the 12 kg I put on after celiac dx. (too much chocolate and too little exercise and too much testing all the gluten-free foods available).

Keep investigating other food intolerances such as fructose malabsorption and keep up your supplements. Whole food diet. Stay clear of gluten-free substitute processed food (keep just for occasional treat) Keep it simple. Good luck.

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YoloGx Rookie

In answer to the questions on cerebral blood flow, Bea you are right. There are a number of articles on BMJ which talk about hypo-perfusion to the frontal cortex and some parts of the temporal lobe due to the histamine triggered by an allergic/autoimmune response... in this case gluten. There are studies on Schizophrenia, OCD, bi-polar and other seemingly independent conditions which have shown connections with ingestion of gluten. I'm thinking of sending these papers to my husband as his uncle has severe schizophrenia, triggered by a bad dose of tetanus (the vaccine) about 50 years ago.

Here are some paper titles:

Neurologic Disorders in Patients With Celiac Disease: Are They Mediated by Brain Perfusion Changes?

Regional cerebral hypoperfusion in patients with celiac disease

Gluten encephalopathy with psychiatric onset: case report

Nicola Poloni*, Simone Vender, Emilio Bolla, Paola Bortolaso, Chiara Costantini and Camilla Callegari

Thank you Caroline! How did you go about finding these articles by the way? I have been having trouble on my end here. It was my dear bf that showed me the original U-tube book review a year or so ago.

I agree with Irish Heart however that it would have been better if I had said I had a recollection of such rather than stating it as possible fact. I had just gone around assuming it was fact since one of my common symptoms from trace glutening is getting a migraine, as it is for my bf, and depression and brain fog with us both as well as our good friend Graeme, and many others here on celiac.com according to the best of my recollection.

So ironic that you the newby so to speak has some articles referring to research on that front concerning cerebral blood flow and exposure to gluten in sensitive people. What some here might not realize is that you are taking formal classes studying herbology in the British Isles. Do you have better access to medical information than us lay people perhaps??

Meanwhile I think Skylark is right in her kind suggestions that you exercise daily such as taking regular walks and do special things for yourself like take epsom salt baths and find a way to treat yourself now and then somehow despite all your many responsibilities. I have found protocols like this really help both the body and the spirit, as many have. Like Skylark suggests, it is important sometimes just to make yourself do some of these things to break through the blahs and low energy that stops you.

The other poster who kindly suggested taking a full spectrum antibiotic like Flagyl however could easily be disagreed with. I personally had Flagyl years ago and it resolved nothing. Instead it made me more sensitive to various other foods since it destroyed my gut flora. The truth was in retrospect that I had an early sensitivity to salicylates which no antibiotic could cure; although he antibiotics did help make it worse. Nevertheless, there have been times I have needed antibiotics for my kidneys for instance and they have been a godsend. The trick here is to know the difference when its needed and when its not and what and how much...

It might also be wise in such a situation to continue working in concert with the naturopath/herbalist or even a more understanding medical doctor to help your body get back into good flora shape again so one would be less subject to new food and chemical sensitivities like what many here (myself included) have unfortunately experienced.

The good news these days is that there is a movement growing to make and use one's own home grown probiotic laden food as in yogurt, kefir, sauerkraut etc. Looking into a GAPS diet or simply being inspired by it may help many here to start feeling a bit more energy, especially if they have had too many antibiotics or simply not enough live foods.... Plus I hear there is a more effective probiotic one can order called I believe VL#3. Though expensive, I bet one could inoculate some of one's live home made foods with it, thus perhaps lessening the need to buy it repeatedly. And yet more research for better probiotic strains I hear are coming down the pike.

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ravenwoodglass Mentor

A quick search will bring up many articles on neurological disorders in celiac disease and their possible causes. You can hop to others on pubmed from this one.

Regional cerebral hypoperfusion in patients with celiac disease

Open Original Shared Link

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YoloGx Rookie

A quick search will bring up many articles on neurological disorders in celiac disease and their possible causes. You can hop to others on pubmed from this one.

Regional cerebral hypoperfusion in patients with celiac disease

Open Original Shared Link

Thank you both, Raven and Caroline!

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IrishHeart Veteran

I'd like to be clear about what I said, because I suffered MANY neurological problems from celiac. I know full well it affects the brain, I'm living proof, so I am not debating this issue--not at all.

I am just not certain there is any evidence that "gluten clogs the carotid arteries up to 30%". I have searched for this data, but I cannot find it.

There's no question about depression, anxiety, migraines, ataxia, etc. resulting from celiac disease, but I simply cannot find medical articles that cite this particular association. If someone finds it, let me know.

Just want to be clear about my question :)

IH

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CR5442 Contributor

I'd like to be clear about what I said, because I suffered MANY neurological problems from celiac. I know full well it affects the brain, I'm living proof, so I am not debating this issue--not at all.

I am just not certain there is any evidence that "gluten clogs the carotid arteries up to 30%". I have searched for this data, but I cannot find it.

There's no question about depression, anxiety, migraines, ataxia, etc. resulting from celiac disease, but I simply cannot find medical articles that cite this particular association. If someone finds it, let me know.

Just want to be clear about my question :)

IH

Hi there, I think that perhaps Bea meant that the blood flow to the brain is restricted by 30%. We all know that that is what causes a migraine. The source of blood for the brain is the carotid. Where the arterial narrowing occurs I don't know, though it is more likely to be in the smaller arteriols within the brain. By definition however, if you have less blood able to access an area of the brain, the flow has to slow further on down the line as there is nowhere for it to go.

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CR5442 Contributor

Thank you Caroline! How did you go about finding these articles by the way? I have been having trouble on my end here. It was my dear bf that showed me the original U-tube book review a year or so ago.

I agree with Irish Heart however that it would have been better if I had said I had a recollection of such rather than stating it as possible fact. I had just gone around assuming it was fact since one of my common symptoms from trace glutening is getting a migraine, as it is for my bf, and depression and brain fog with us both as well as our good friend Graeme, and many others here on celiac.com according to the best of my recollection.

So ironic that you the newby so to speak has some articles referring to research on that front concerning cerebral blood flow and exposure to gluten in sensitive people. What some here might not realize is that you are taking formal classes studying herbology in the British Isles. Do you have better access to medical information than us lay people perhaps??

Meanwhile I think Skylark is right in her kind suggestions that you exercise daily such as taking regular walks and do special things for yourself like take epsom salt baths and find a way to treat yourself now and then somehow despite all your many responsibilities. I have found protocols like this really help both the body and the spirit, as many have. Like Skylark suggests, it is important sometimes just to make yourself do some of these things to break through the blahs and low energy that stops you.

The other poster who kindly suggested taking a full spectrum antibiotic like Flagyl however could easily be disagreed with. I personally had Flagyl years ago and it resolved nothing. Instead it made me more sensitive to various other foods since it destroyed my gut flora. The truth was in retrospect that I had an early sensitivity to salicylates which no antibiotic could cure; although he antibiotics did help make it worse. Nevertheless, there have been times I have needed antibiotics for my kidneys for instance and they have been a godsend. The trick here is to know the difference when its needed and when its not and what and how much...

It might also be wise in such a situation to continue working in concert with the naturopath/herbalist or even a more understanding medical doctor to help your body get back into good flora shape again so one would be less subject to new food and chemical sensitivities like what many here (myself included) have unfortunately experienced.

The good news these days is that there is a movement growing to make and use one's own home grown probiotic laden food as in yogurt, kefir, sauerkraut etc. Looking into a GAPS diet or simply being inspired by it may help many here to start feeling a bit more energy, especially if they have had too many antibiotics or simply not enough live foods.... Plus I hear there is a more effective probiotic one can order called I believe VL#3. Though expensive, I bet one could inoculate some of one's live home made foods with it, thus perhaps lessening the need to buy it repeatedly. And yet more research for better probiotic strains I hear are coming down the pike.

Hi Bea, Skylark and all

Yes, I have access to a number of online journals through my course. These are from the British Medical Journal. So if you ever need me to look something up very happy to.

I do agree wholeheartedly with Skylark on the 'looking after myself' thing. I'm trying desperately to give myself rest when I feel I need it. We have a dog so we walk him too, and obviously we go up to University twice a week so we get plenty of exercise, plus the gardening that I'm going to ramp up over the next few months to establish my herb crops! The epsom baths I used to take quite a few of so I might start that again. It's kind of nice being given permission to be nice to oneself! When you're on your own with young children as some of us may know, you tend to push yourself really hard, to make sure you compensate for there being only one of you. I was going to start up some simple yoga poses - iyengar I think is the best for me. Maybe my little girl will want to have a go too!

Re. the Flagyl, I totally agree Bea. I was put on a course when pregnant with my son for a gum infection (before I really started using the herbs) and I've never been so poorly in my life. Hugo, now two, had a lot of digestive problems at the beginning because of this. Luckily they seem to have sorted out with a lactose free relatively gluten free diet. It gave me systemic Candida which made the whole gluten sensitivity worse. I spent a year getting rid of it, and then the stress of my husband leaving started the 'real' gluten sensitivity reaction. Back to back migraines, D (which I had never had before) and massive weight loss. As soon as I ditched the gluten the migraines went.

I do take a good probiotic. It is called Bio-kult. It works really well for all of us, particularly when recovering from tummy things. I have to be careful though as it tends to be so effective it bungs me up! Thinking about this gastro, I had all the symptoms of potassium deficiency afterwards, which is to be expected. I think that might be why I'm having trouble emotionally. The NHS here doesn't run bloods unless you are half dead these days so I may have to pay for a panel myself. I might try changing surgery's in an effort to find a good GP!

As for diet, mine is very restrictive. I keep away from dairy, fruit, nuts, grains of all kinds, beans, fish. I react to all of these even though technically I should be able to eat them. I just think right now they are too much for my weak intestines. I'm ok with potato, meat (lean)and all vegetables, butter and rice milk. Am utterly bored with this way of eating and look forward to the day when I can add some new things back!

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IrishHeart Veteran

Hi there, I think that perhaps Bea meant that the blood flow to the brain is restricted by 30%. We all know that that is what causes a migraine. The source of blood for the brain is the carotid. Where the arterial narrowing occurs I don't know, though it is more likely to be in the smaller arteriols within the brain. By definition however, if you have less blood able to access an area of the brain, the flow has to slow further on down the line as there is nowhere for it to go.

I am aware of how the carotid arteries work, thanks, hon!. :)

And I am sorry, but we all do NOT know " this causes a migraine."

Migraine headaches are not from restricted blood flow in the carotid arteries, but result from a combination of blood vessel enlargement and the release of chemicals from nerve fibers that coil around these blood vessels. During the headache, an artery enlarges that is located on the outside of the skull just under the skin of the temple (temporal artery). This causes a release of chemicals that cause inflammation, pain, and further enlargement of the artery.

And according to the MAYO CLINIC, although much about the cause of migraines isn't understood, genetics and environmental factors seem to both play a role.

Migraines may be caused by changes in the brainstem and its interactions with the trigeminal nerve, a major pain pathway. Imbalances in brain chemicals, including serotonin — which helps regulate pain in your nervous system — also may be involved.

Serotonin levels drop during migraine attacks. This may trigger your trigeminal system to release substances called neuropeptides, which travel to your brain's outer covering (meninges). The result is headache pain.

Migraine headache triggers

Whatever the exact mechanism of the headaches, a number of things may trigger them. Common migraine triggers include:

Hormonal changes in women.

Foods. Some migraines appear to be triggered by certain foods. Common offenders include alcohol, especially beer and red wine; aged cheeses; chocolate; aspartame; overuse of caffeine; monosodium glutamate — a key ingredient in some Asian foods; salty foods; and processed foods. Skipping meals or fasting also can trigger migraine attacks.

Stress. Stress at work or home can instigate migraines.

Sensory stimuli. Bright lights and sun glare can induce migraines, as can loud sounds. Unusual smells — including pleasant scents, such as perfume, and unpleasant odors, such as paint thinner and secondhand smoke — can also trigger migraines.

Changes in wake-sleep pattern.

Physical factors. Intense physical exertion.

Changes in the environment. A change of weather or barometric pressure can prompt a migraine.

Medications. Certain medications can aggravate migraines, especially oral contraceptives and vasodilators, such as nitroglycerin."

I do not see how blood flow in the carotid artery is involved???

And I am NOT talking about neurological dysfunction and impairment cause by gluten/celiac. I know that, too. That is well-established in the Pub Med articles, etc. I've read dozens of them.

You are missing my point. My issue is with the "statement in fact " that "gluten causes restricted blood flow in the carotid arteries by 30%."

Where is this written?

I would like to see the medical article. There is an expectation that what is posted by members is either stated as "a personal experience" or supported by medical literature or proven facts.

Speculation does really not help our cause.

Regards,

IH

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CR5442 Contributor

I stand highly corrected! Honestly, I don't really think that Bea meant to put out there a random figure just like that. She must have read it somewhere. If anyone is like me on here, I read so many papers, for my degree and also for personal interest that I often read something, store it away and completely forget where I got it from! Easily done.

Perhaps we should just put this to bed.

Everyone's very kind comments on how I might move forward/coping strategies have been absolutely brilliant and I thank everyone greatly from the bottom of my heart. Already feeling a little lighter, and more positive.

Carolinex

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YoloGx Rookie

Re. the Flagyl, I totally agree Bea. I was put on a course when pregnant with my son for a gum infection (before I really started using the herbs) and I've never been so poorly in my life. Hugo, now two, had a lot of digestive problems at the beginning because of this. Luckily they seem to have sorted out with a lactose free relatively gluten free diet. It gave me systemic Candida which made the whole gluten sensitivity worse. I spent a year getting rid of it, and then the stress of my husband leaving started the 'real' gluten sensitivity reaction. Back to back migraines, D (which I had never had before) and massive weight loss. As soon as I ditched the gluten the migraines went.

I do take a good probiotic. It is called Bio-kult. It works really well for all of us, particularly when recovering from tummy things. I have to be careful though as it tends to be so effective it bungs me up! Thinking about this gastro, I had all the symptoms of potassium deficiency afterwards, which is to be expected. I think that might be why I'm having trouble emotionally. The NHS here doesn't run bloods unless you are half dead these days so I may have to pay for a panel myself. I might try changing surgery's in an effort to find a good GP!

As for diet, mine is very restrictive. I keep away from dairy, fruit, nuts, grains of all kinds, beans, fish. I react to all of these even though technically I should be able to eat them. I just think right now they are too much for my weak intestines. I'm ok with potato, meat (lean)and all vegetables, butter and rice milk. Am utterly bored with this way of eating and look forward to the day when I can add some new things back!

Hi Caroline,

I am glad to hear you have decided to take more epsom salt baths. They are really nice especially if you put a candle on and some relaxing music.

You might want to consider making home made sauerkraut inoculated initially with your Bio-kult along with the sea salt. Its easy to make, very tasty and may well give you an extra boost of energy. There are tons of U-tube videos on the subject--though most don't mention how you can innoculate them with the pro biotics. I originally heard of the idea here on the SCD thread (specific carbohydrate diet). I too have a very limited diet, and love this new addition to it! It may help you get better soon so that you can tolerate more foods. For me for instance it has helped me adjust so I can now easily digest black eyed peas and asuki beans.

Bea

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YoloGx Rookie

I am aware of how the carotid arteries work, thanks, hon!. :)

And I am sorry, but we all do NOT know " this causes a migraine."

Migraine headaches are not from restricted blood flow in the carotid arteries, but result from a combination of blood vessel enlargement and the release of chemicals from nerve fibers that coil around these blood vessels. During the headache, an artery enlarges that is located on the outside of the skull just under the skin of the temple (temporal artery). This causes a release of chemicals that cause inflammation, pain, and further enlargement of the artery.

And according to the MAYO CLINIC, although much about the cause of migraines isn't understood, genetics and environmental factors seem to both play a role.

Migraines may be caused by changes in the brainstem and its interactions with the trigeminal nerve, a major pain pathway. Imbalances in brain chemicals, including serotonin — which helps regulate pain in your nervous system — also may be involved.

Serotonin levels drop during migraine attacks. This may trigger your trigeminal system to release substances called neuropeptides, which travel to your brain's outer covering (meninges). The result is headache pain.

Migraine headache triggers

Whatever the exact mechanism of the headaches, a number of things may trigger them. Common migraine triggers include:

Hormonal changes in women.

Foods. Some migraines appear to be triggered by certain foods. Common offenders include alcohol, especially beer and red wine; aged cheeses; chocolate; aspartame; overuse of caffeine; monosodium glutamate — a key ingredient in some Asian foods; salty foods; and processed foods. Skipping meals or fasting also can trigger migraine attacks.

Stress. Stress at work or home can instigate migraines.

Sensory stimuli. Bright lights and sun glare can induce migraines, as can loud sounds. Unusual smells — including pleasant scents, such as perfume, and unpleasant odors, such as paint thinner and secondhand smoke — can also trigger migraines.

Changes in wake-sleep pattern.

Physical factors. Intense physical exertion.

Changes in the environment. A change of weather or barometric pressure can prompt a migraine.

Medications. Certain medications can aggravate migraines, especially oral contraceptives and vasodilators, such as nitroglycerin."

I do not see how blood flow in the carotid artery is involved???

And I am NOT talking about neurological dysfunction and impairment cause by gluten/celiac. I know that, too. That is well-established in the Pub Med articles, etc. I've read dozens of them.

You are missing my point. My issue is with the "statement in fact " that "gluten causes restricted blood flow in the carotid arteries by 30%."

Where is this written?

I would like to see the medical article. There is an expectation that what is posted by members is either stated as "a personal experience" or supported by medical literature or proven facts.

Speculation does really not help our cause.

Regards,

IH

Not to doubt your sources, however there is what is called gluten induced migraine that strange as it may seem relates to restricted blood flow. I certainly have had more than my share of that as has my partner and it seems likely Caroline has too.

Below is a something you might find interesting written on both this subject as well as restricted cerebral blood flow in general as it relates to other neurological disorders.

Open Original Shared Link

I would hope more than anything that we can all admit we are human after all and capable of making mistakes or that information out there often shifts and changes depending on what sources you look at.

I apologized yesterday since I should have said initially that that information I had concerning restricted blood flow and depression was from a U-tube video book review I had watched over a year ago which I now can't find and neither do I remember the author or name of the book. Hopefully eventually I will. But I haven't yet.

I don't apologize however for trying to help Caroline out of a funk which really is the main topic here. Celiac and depression are common and many of us have had to deal with it for a variety of reasons. The fact she is starting to feel better is wonderful.

The other main point is for us all to hang together rather than try to create some kind of weird competition that splits us apart. If we can't try to understand and support each other and give each other some slack, who will??

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CR5442 Contributor

Irishheart. I was wondering about what you said on Migraines and I am sure that migraines begin as a narrowing of the arteries. see attached Open Original Shared Link Then, once the brain realizes it is short of blood then the arteries expand to develop in to the thumping headache some of us get after the Aura. I have had these for many years so feel that this is the mechanism that explains my symptoms. However, again, I know that you probably are medically trained by the sounds of it, so perhaps know far more and in greater depth.

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YoloGx Rookie

Irishheart. I was wondering about what you said on Migraines and I am sure that migraines begin as a narrowing of the arteries. see attached Open Original Shared Link Then, once the brain realizes it is short of blood then the arteries expand to develop in to the thumping headache some of us get after the Aura. I have had these for many years so feel that this is the mechanism that explains my symptoms. However, again, I know that you probably are medically trained by the sounds of it, so perhaps know far more and in greater depth.

Caroline,

Here is a back and forth discussion of the subject of depressed cerebral blood flow and migraine in a medical journal here in the States:

Open Original Shared Link

I think the old view was that it was always seen as too much blood in the brain. But now its seen as more complicated than that, beginning with reduced blood flow.

My boyfriend always puts heat to his left eye where it hurts when he has a gluten induced migraine and I too find it helps if I do it soon enough. I have also found that homeopathics help reduce the migraine intensity and duration, especially if taken soon enough -- particularly belladonna. Unfortunately I have had way too much experience with this of late. And it wasn't caused by my diet, nor that of my bf.

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GFinDC Veteran

:) ***start IMHO***

Well here comes a big IHMO paragraph then. IMHO IMHO IHMO. I don't know about migraines and what causes them. I do remember reading something about licorice maybe helping them quite a few years ago. But I have never been a headache kind of person, having not had many. However I have had symptoms of reduced blood flow to my thinker IMHO to the max. I don't think it was caused by gluten though, but another food intolerance. Soy to be particular. I used to pass out sometimes for no apparent reason. I had a bunch of wires hooked to my head and lights flashed in my eyes by a nuerologist. Kind of like the flashy thing in MIB IMHO. The nuerologist couldn't find anything wrong. But there was, I was eating soy. When I stopped eating soy, those symptoms slowly went away. When this happened it kind of felt like the world was suddenly gone from inside me, like all the blood had been sucked out of my head into a black hole underneath my feet. Very disturbing feeling really, kind of an empty feeling IMHO. So I do believe a food intolerance can reduce blood flow, based on my own experience with soy. If that would cause a headache in some people I don't have a clue, it caused me to pass out. We are all a little unique so maybe, IMHO. Maybe we will know more answers on some of these questions in a few years. There seems to be a little more research on celiac being done now a days. In the meantime though we are stuck with figuring out celiac on our own, with limited support from the medical establishment. They just don't know everything about celiac, (or seem to care much either), or any auto-immune disease for that matter. Research papers are great to read, and I like them too. But personal experiences are better than doctors, who say you aren't sick if their fancy machines and tests that cost big bucks don't react the way they expect. And really the issue is they (doctors) are just clueless about how the human body really reacts to these kind of issues. VMIMHO Very much my opinion.

In conclusion, I do believe blood flow to the brain can be affected by food intolerances based on personal experience. To what percentage I have no clue, but I would guess by a lot.

***/end IMHO***:)

I do support providing references where available, as it helps us all come to a common starting point for discussion. That can be very helpful.

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IrishHeart Veteran

Everyone's very kind comments on how I might move forward/coping strategies have been absolutely brilliant and I thank everyone greatly from the bottom of my heart. Already feeling a little lighter, and more positive.

Carolinex

Hon, that was the main goal of many of our responses. We just want you to feel better. Best wishes to you!

Cheers, IH

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YoloGx Rookie

:) ***start IMHO***

Well here comes a big IHMO paragraph then. IMHO IMHO IHMO. I don't know about migraines and what causes them. I do remember reading something about licorice maybe helping them quite a few years ago. But I have never been a headache kind of person, having not had many. However I have had symptoms of reduced blood flow to my thinker IMHO to the max. I don't think it was caused by gluten though, but another food intolerance. Soy to be particular. I used to pass out sometimes for no apparent reason. I had a bunch of wires hooked to my head and lights flashed in my eyes by a nuerologist. Kind of like the flashy thing in MIB IMHO. The nuerologist couldn't find anything wrong. But there was, I was eating soy. When I stopped eating soy, those symptoms slowly went away. When this happened it kind of felt like the world was suddenly gone from inside me, like all the blood had been sucked out of my head into a black hole underneath my feet. Very disturbing feeling really, kind of an empty feeling IMHO. So I do believe a food intolerance can reduce blood flow, based on my own experience with soy. If that would cause a headache in some people I don't have a clue, it caused me to pass out. We are all a little unique so maybe, IMHO. Maybe we will know more answers on some of these questions in a few years. There seems to be a little more research on celiac being done now a days. In the meantime though we are stuck with figuring out celiac on our own, with limited support from the medical establishment. They just don't know everything about celiac, (or seem to care much either), or any auto-immune disease for that matter. Research papers are great to read, and I like them too. But personal experiences are better than doctors, who say you aren't sick if their fancy machines and tests that cost big bucks don't react the way they expect. And really the issue is they (doctors) are just clueless about how the human body really reacts to these kind of issues. VMIMHO Very much my opinion.

In conclusion, I do believe blood flow to the brain can be affected by food intolerances based on personal experience. To what percentage I have no clue, but I would guess by a lot.

***/end IMHO***:)

I do support providing references where available, as it helps us all come to a common starting point for discussion. That can be very helpful.

Thank you for your honest and humble opinion, and experience, IMHO, IMHO--LOL!

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Skylark Collaborator

That vascular stuff on migraine is pretty old. This is a nice overview of the current understanding (if you can call the jumble of ideas "understanding" :lol: ).

Open Original Shared Link

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IrishHeart Veteran

That vascular stuff on migraine is pretty old. This is a nice overview of the current understanding (if you can call the jumble of ideas "understanding" :lol: ).

Open Original Shared Link

Thank you , Skylark, this is the exact information I was trying to convey. The same factors I list above are explained--in better detail--in this article.

But, one of those triggers listed above includes:

"Certain foods and food additives can precipitate migraine. These include alcohol, caffeine, chocolates, artificial sweeteners (eg, aspartame, saccharin), monosodium glutamate (MSG), citrus fruits, and meats with nitrites.

Foods containing tyramine may provoke migraine. Such foods include the following:

Aged cheese

Yogurt

Sour cream

Chicken livers

Sausages

Bananas

Avocados

Canned figs

Raisins

Peanuts

Soy sauce

Pickled fish

Fresh-baked breads

Pork

Vinegars

Beans"

I know for myself, personally, that MSG is a major bugger. :blink: The peri-menopausal, hormone-related migraines, however, made me want to rip my own head off. :huh:

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Gemini Experienced

Also, I believe that yolo self-identifies as someone with a high sensitivity to gluten. She is relating her experience, and if the original poster is someone who also suffers from high sensitivity to gluten, this may be useful. Certainly, it's common on this board to suggest avoiding hair and skin products with gluten in them, which I thought was really out there when I first heard it. I also don't think it's outrageous to think that anybody with a gluten sensitivity could be glutened from laundering the clothes of someone who eats gluten. I've seen my husband covered in crumbs after eating a sandwich. So, yeah, if she is handling clothes and shaking crumbs out of them and especially if she has a high sensitivity to gluten than, yes, it's entirely possible.

I imagine as someone who self-identifies with high sensitivity to gluten, a reply like this on a message board devoted to gluten intolerance would make her feel very lonely, which is really sad and arguably unnecessary. I'm personally grateful that I'm not as sensitive as yolo.

I am a sensitive Celiac also...very, and I am careful as I have to be without becoming OCD about it. Yup, there is a lot of that going around and you cannot just keep blaming sensitivity. No one has to worry about being glutened from doing someone's laundry, unless you ingest clothing with gluten on it. We are straying way off topic from how this disease works. Anyone can certainly live their life anyway they want to but trying to sell this baloney on a reputable Celiac forum like this begs pointing out how far out that is. There are people new to this disease who may not be thinking clearly, due to gluten head fog and they might actually buy into this.

No need to create fear where there should be none.

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Gemini Experienced

I hate to tell you this but that trapped feeling could be the source of most of your issues. Stress has a profound effect on both autoimmunity and your resistance to illness. It can directly cause depression too - look up "learned helplessness". And of course your adrenals aren't working well in a chronic stress situation! Remember that too much cortisol is almost more likely than too little, and high cortisol directly causes depression. Unless you had an abnormal 24-hour salivary cortisol test, the herbs you are taking for adrenal fatigue (assuming that such a thing even exists which is questionable) may be pushing you in the wrong direction.

I am finding acupuncture helpful for depression. You could also try some of the milder remedies like 5-HTP or St. John's wort (either/or, not both, and not if you're on a prescription antidepressant). It's tremendously important to get enough B-complex in a high-stress situation becasue you will use up your reserves. If you tolerate citrus, have an orange a day for the natural vitamin C too. Make sure you are getting enough omega-3 fatty acids for proper immune function. A couple fish oil capsules a day can work wonders for your state of mind. Also ask your doctor about vitamin D testing as low D can make you feel worse and lower immune function.

Sometimes doing little things for yourself can make a difference. Buy flowers, have a nice soak in a hot epsom bath, get a massage (particularly helpful as it will release some endorphins), or splurge on something small that makes you happy. My favorite little treat is an expensive bar of super-fragrant soap for my morning shower.

You must exercise, no matter how tired you are. Get out of the house and take a 15 minute walk every day, ideally after dinner so it helps your digestion. If you crank up the pace and walk quickly or jog, you will get more endorphins into your system but I know how hard moving fast is when you are tired. Even a moderate paced walk will help.

While you do this, look at how you can get out of the trap. Remember that whenever God closes a door, he opens a window. It may be that the solution will present itself if you can treat yourself kindly and clear your head for a bit. :) If you can get clear of the stress you may find all these health problems melt away. (You wouldn't believe how sick some Ph.D. and medical students get - this is how I know about the effects of chronic stress on health.)

Oh.....this is very good, Skylark! I think all your suggestions work better than being over the top concerned about sensitivity and worrying about all the gluten in the world. You need to relax if you want to heal and absolutely exercise. I took my recovery up a few notches when I started weight training and cardio. I can go into a session feeling crappy and tired and feel like a different person when I am finished. It also really helps with digestion, as you said. You have to do the whole package and keep it up and before you know it, you start feeling much better.

As for med students and stress, one of my doctors popped with shingles, at the age of 28, because of those long hours as an intern. She said if the training doesn't kill you, you get to graduate. :blink:

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IrishHeart Veteran

A feeling like as soon as I fix one thing, another gets broken. And that isn't just in my health, also in my life too. I'm trying to let go as much as possible and let things take their own course, but feel completely trapped in a life circumstance that I have zero control over, am just reaping the consequences, which means I'm constantly tired and stressed.

As this was part of your original post, I feel it may have been lost in the wandering posts that followed (sometimes known as "thread hijacking" on here :rolleyes:).

Both Skylark and Gemini offered valuable suggestions for reducing stress and without sounding too trite, may I offer something I learned during the last few years? I was in chronic pain, ill and under chronic stress as I tried to find the reason why I was slowly dying and not getting any help from the medical community (mainstream or alternative?)

It's simply this: We cannot always control what happens to us, but we CAN control how we respond to it. There is always a "Plan B" :) and there is nothing as important as our own health. Putting others' needs before our own, taking things too personally , over- extending ourselves, to the detriment of our own well-being...is never healthy or wise. Let unimportant things "go". Take time to just relax and enjoy quiet time EVERY day. It's not selfish, it's self- preservation. ;)

Best wishes to you,

IH

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    • trents
      But if you have been off of wheat for a period of weeks/months leading up to the testing it will likely turn out to be negative for celiac disease, even if you actually have celiac disease. Given your symptoms when consuming gluten, we certainly understand your reluctance to undergo  the "gluten challenge" before testing but you need to understand that the testing may be a waste of time if you don't. What are you going to do if it is negative for celiac disease? Are you going to go back to merrily eating wheat/barley/rye products while living in pain and destroying your health? You will be in a conundrum. Do I or do I not? And you will likely have a difficult time being consistent with your diet. Celiac disease causes inflammation to the small bowel villous lining when gluten containing grains are consumed. This inflammation produces certain antibodies that can be detected in the blood after they reach a certain level, which takes weeks or months after the onset of the disease. If gluten is stopped or drastically reduced, the inflammation begins to decrease and so do the antibodies. Before long, their low levels are not detectable by testing and the antibody blood tests done for diagnosing celiac disease will be negative. Over time, this inflammation wears down the billions of microscopic, finger-like projections that make up the lining and form the nutrient absorbing layer of the small bowel where all the nutrition in our food is absorbed. As the villi bet worn down, vitamin and mineral deficiencies typically develop because absorption is compromised. An endoscopy with biopsy of the small bowel lining to microscopically examine this damage is usually the second stage of celiac disease diagnosis. However, when people cut out gluten or cut back on it significantly ahead of time before the biopsy is done, the villous lining has already experienced some healing and the microscopic examination may be negative or inconclusive. I'm not trying to tell you what to do I just want you to understand what the consequences of going gluten free ahead of testing are as far as test results go so that you will either not waste your time in having the tests done or will be prepared for negative test results and the impact that will have on your dietary decisions. And, who are these "consultants" you keep talking about and what are their qualifications? You are in the unenviable position that many who joint this forum have found themselves in. Namely, having begun a gluten free diet before getting a proper diagnosis but unwilling to enter into the gluten challenge for valid testing because of the severity of the symptoms it would cause them.
    • Zackery Brian
      I'm sorry to hear about the challenges you've been facing with your health. Dealing with celiac disease and multiple food sensitivities can indeed be overwhelming. Here are a few thoughts and suggestions based on your experience and the replies you've received: Confirming Diagnosis: It's great that your gastroenterologist confirmed your celiac disease diagnosis through additional tests. Understanding the specifics of your condition can help tailor your approach to managing it more effectively. Food Sensitivity Testing: While blood tests for food sensitivities can provide some insights, they may not always be completely accurate. As mentioned by others, false positives are common, and individual responses to specific foods can vary. Discussing your test results and symptoms with a healthcare professional knowledgeable about celiac disease and food sensitivities can help clarify your situation. Research and Education: Exploring conditions like Mast Cell Activation Syndrome (MCAS) and histamine intolerance could shed further light on your symptoms and provide additional avenues for managing your health. Gathering information from reliable sources and discussing your findings with your healthcare team can help you make informed decisions about your care. Dietary Management: Managing celiac disease and multiple food sensitivities can be challenging, but finding a balance that works for you is crucial. Working with a dietitian who specializes in celiac disease and food intolerances can help you develop a personalized dietary plan that meets your nutritional needs while minimizing symptoms. Stress Management: Chronic pain and health issues can take a toll on mental and emotional well-being. Finding healthy coping strategies to manage stress, such as mindfulness, relaxation techniques, or engaging in activities you enjoy, may help improve your overall quality of life. Remember, you're not alone in your journey, and seeking support from healthcare professionals, support groups, or online communities can provide valuable encouragement and guidance.
    • Fluka66
      Thank you very much for your reply. I hadn't heard of celiac disease but began to notice a pattern of pain. I've been on the floor more than once with agonising pain but this was always put down to another abdominal problem consequently I've been on a roundabout of backwards and forwards with another consultant for many years. I originally questioned this diagnosis but was assured it was the reason for my pain. Many years later the consultant gave up and I had a new GP. I started to cut out certain food types ,reading packets then really started to cut out wheat and went lactose free. After a month I reintroduced these in one meal and ended screaming in agony the tearing and bloating pain. With this info and a swollen lymph node in my neck I went back to the GP.  I have a referral now . I have also found out that acidic food is causing the terrible pain . My thoughts are this is irritating any ulcers. I'm hoping that after a decade the outlook isn't all bad. My blood test came back with a high marker but I didn't catch what it was. My GP and I have agreed that I won't go back on wheat just for the test due to the pain , my swollen lymph node and blood test results.  Trying to remain calm for the referral and perhaps needed to be more forceful all those years ago but I'm not assertive and consultants can be overwhelming. Many thanks for your reply . Wishing you all the best.
    • Moodiefoodie
      Wow! Fascinating info. Thanks so much! I really appreciate the guidance. @Spacepanther Over the years I have had rheumatologists do full lab work ups on me. They told me they had screened me for arthritis, lupus, and Lyme disease (all negative). In addition to joint pain and stiffness I had swelling in both knees that later moved to my elbow as well.  I also experience stiffness and pain in my neck and shoulders when it flares. I vomited fairly often growing up, but there wasn’t a real pattern to it and I didn’t know it wasn’t normal (thought people caught stomach viruses often).  I don’t usually have stomach symptoms immediately after eating gluten that I notice.  The only other joint condition I know of is fibromyalgia. Good luck! Hope you can get it figured out. I only assumed my joint symptoms were due to the celiac’s because it is under control for the most part on a gluten-free diet.  The rheumatologist also mentioned that some inflammatory/autoimmune diseases can be slow-moving and not detectable until they progress.
    • knitty kitty
      @Spacepanther, I found these articles about the connection between Celiac and joint pain. Musculoskeletal Complications of Celiac Disease: A Case-Based Review https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10201087/ And   Intestinal microbiome composition and its relation to joint pain and inflammation https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6814863/ And The gut microbiome-joint connection: implications in osteoarthritis https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6903327/ Sounds like it's time to change the diet to change the microbiome.
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