Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

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


CR5442

Recommended Posts

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


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



  • Replies 60
  • Created
  • Last Reply
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

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

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.)

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.

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.

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


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



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!

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

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.

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!

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

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

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

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??

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.

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.

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.

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

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!

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

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:

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.

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:

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

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      126,209
    • Most Online (within 30 mins)
      7,748

    Ashley P.
    Newest Member
    Ashley P.
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.2k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • More2Learn
      Thanks, yes, I've gone back and forth.  There is a lot of autoimmune disease in my family, so primarily I was thinking a real diagnosis might be helpful for other family members -- especially as I have two young biological nephews.  I feel like I am at a crossroads, where if I'm going to test now would be the time, since I've been in a less-than-perfect eating period.  I'm either going to just going to use what I've learned in these last few months to purposely never cheat again (obviously there is the accidental glutening situations) or test first, and then do that.  I don't need an official diagnosis so much that if I'm doing well I'm going to sabotage that by then starting to eat gluten again. I'm so glad you said this.  Even from what I've read so far, it makes sense to me that this is a misconception.  But growing up with all kinds of allergies, I can see how, as for the general population it's just easier for everyone to simplify it down to a type of "allergy," people would assume this.  It's just how most people look at allergies and diets and gluten avoidance has been painted as both.  I even see it in my journey to date, when I say I want a gluten free selection at a restaurant and I am asked "is it an allergy?" and it is so much easier just to say yes (even if the answer is actually well, no, it's autoimmune).  Because the "yes" answer is the "this is serious" answer.
    • kopiq
      I also have food particles left on toiet paper when i wipe and my stool is light yellow not absorbing fats. I urinate about 15 times a day and have very sticky snot,dry throat.
    • kopiq
      Hi all, I was diagnosed by blood work about 2 months ago and have since went on a strict gluten free diet. I have an endoscopy in January and the GI dr said nothing about staying on gluten for it; hes aware i went no gluten. starting to heal symptoms include: (this is huge) sensation coming back to genitals and when having a bowl movement. everything has been numb for a long time down there including lower belly button area. good size (not abnormal) bowel movements once a day or every two days. small dot size wart just fell off my finger that was there for years. have not broke out with a cold sore this winter (every winter prior for years i would develop a cold sore on my lip) Ongoing issues I don't sweat. not from my hands, or armpits or feet. I do not get butterflys in stomach. my hands have been so dry for years ive been using a crack cream as they crack and bleed very severely in the fall and winter.  (since going gluten free ive not used crack cream but they are still very very dry and chapped/flaky, no sweat or moisture in palms of hands at all. I dont crave food. i have no cravings at all, not for pizza, ice cream , nothing. my cravings are dead. smell of foods kinda make me hungry, but my stomach blocks it. pins needles in feet get weak legs standing up from sitting and dizzy, things almost turn black. i cannot tolerate veggies or vitamins. Iam vitamin D deficient according to my Dr and Ive tried vitamin D pills. they give me a massive migraine for 8 hours and upset my stomach. the heat from the direct sun make me extremely tired to the point of wanting to pass out. again i don't sweat. broccoli gives me a migraine headache as well. mushrooms, bell peppers burn my stomach. fruits burn my stomach, fats (peanut butter, any oil or fat from meats make me sick to my stomach for a couple hours or longer. salt and pepper burns my stomach. all these issues cause pain at my belly button area and expand to the rest of my upper stomach and sides the more i ingest through out the day. I currently eat bland basmati rice, chicken, pork chops (fat trim), boiled russet potatoes no skin for three meals a day. my snacks are gluten free ground buckwheat flour pancakes. (just water, no oil , salt, dairy.) how am i to get vitamins in my system if i cannot tolerate them in my stomach? i mentioned epidermal vitamin patchs but dr said no. why cant i stand the heat from the sun ? why cant i sweat? thanks for any info.                
    • trents
      Because you have significantly reduced your gluten intake over a considerable amount of time, it is likely that you will test negative on the antibody tests. However, if the $112 for the Quest test is not a burden, it wouldn't hurt to try. It tests for total IGA (to ascertain if you are IGA deficient) and tTG-IGA. If total IGA is deficient, it can result in false negatives in other IGA tests. The tTG-IGA is the single most popular test ordered by physicians. The Quest test is not a complete celiac panel by any means (refer to the linked article above) but it might be a good place to start. Personally, I think you know enough to conclude that you need to get serious about avoiding gluten, whether you have celiac disease or NCGS. Human nature being what it is, however, many people seem to need an official diagnosis of celiac disease in order to stay on the bandwagon. Otherwise, they seem to rationalize cheating on the gluten-free diet. And there is this misconception out there that NCGS is inconvenient and uncomfortable but not harmful so it's okay to cheat. The more we learn about gluten-related disorders the more they seem to not fit into our neat little black and white categories. By the way, celiac disease is not a food allergy. It is classified as an autoimmune disorder.
    • More2Learn
      These responses are all extremely helpful, ty.  Really good reminder about omega 6.  I also know I'm low in zinc; I took the zinc test where I drank it on a spoon and couldn't taste it.  To that end, I try to eat a lot of oysters.  I do think it would be a good idea to get the blood test.  Two questions: 1-  Is there any reason you wouldn't recommend that I just buy and take a test like this as a first step? 2- I've been somewhat gluten free since ~Jan 2023 (technically organic, gluten free, soy free, light on dairy).  I eat a lot of meat, vegetables, rice -- a common breakfast for me is three eggs and a sausage link, and I can't remember the last time I had a sandwich or bread.  However, because in my mind I didn't think I had an allergy, and I more was doing gluten free to avoid artificially iron-enriched foods, I do make exceptions.  I'll eat breaded calamari.  When my Dad visits, I split mozzarella sticks with him because he loves them so much.  I'll eat the "gluten sensitive" items at a restaurant and if they asked, "is cross contamination ok?",  I always said yes.  Based on that, since I never probably fully eliminated gluten, but it was significantly reduced... is that good enough to take the blood test?  Because the pain in my side gets SO bad (really sometimes I can't function, and I absolutely thought I was dying), I am hesitant to do the gluten challenge.  Would it make sense to take the test, and if it's negative, then consider doing the challenge and seeing if I can deal with eating the bread every day? Thanks again!
×
×
  • Create New...