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What To Do For A Headache Because Most Pills Have Gluten


bon appetit

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bon appetit Newbie

Hello Everyone,

Recently diagnosed celiac, well let me qualify that I was diagnosed at 9 months old but my mother was told that I would grow out of it by the time I was ten. Now I'm sick as a dog and trying to come to grips with my new reality.

I have read that headache medications have gluten in them, what do you do when you have headaches, currently suffering.

Any help you can offer would be fantastic

Bon Apetit


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jerseyangel Proficient

Hi and welcome to the board :)

There are many medications that are safe for us and do not contain gluten. It's very important to always check though, because some do.

For headaches and such, I use Tylenol Extra Strength Caplets or Bufferin Extra Strength. (Bufferin regular strength has gluten, the last I checked).

Mom23boys Contributor

I'm not a big med person. We start with a hot cup of tea.

gabby Enthusiast

I use Advil gelcaps...regular or extra strength. they are the blue gel-like tablets

hope that helps!

gfp Enthusiast

Depending on the severity ... generic ibuprofen (find a cheap brand and check the product sheet then stick to that brand)

Severe I get prescrpition codeine phosphate. Combined with Promethazine which doesbles the efficiency of conversion into morphine in the liver it is quite effective so long as you don't need to drive etc.

Promethazine can be bought over the counter in the UK as an allergy med so I can get double the effect while my GP doesn't need to prescribe as much Class A ...

flourgirl Apprentice

I find that Tylenol works just fine most of the time. Seems I get lots of headaches in the past year or so. If you have any troubles with Dermatitis Herpetiformus, you'll want to avoid anti-inflammatories, as they can aggrivate it. For me, the headaches come on, not only with some foods....but I can feel them coming when I get over tired (which doesn't take much these days!). If I can, I stop what I'm doing and get some rest before the ache gets too bad. Hope this is helpful!

RiceGuy Collaborator

Depending on how long you've been gluten-free, the headaches may be a result of damage from gluten. If so they should subside as you continue being gluten-free. However, do watch out for other intolerances, such as dairy, eggs, meat, corn, soy, peanuts, nightshades, etc. These are just some of the most common allergenic foods. It is highly recommended to keep a food journal, so that you can see if there is a relationship between the headaches and the foods you eat. Also, supplements can go a long way in this regard, so you might find some nutritional supplementation very effective. I've read magnesium is very helpful for many people, which makes sense since statistically, something like 70% of Americans have a deficiency in magnesium.

And of course, avoid things like aspartame.

Though probably less likely, things in your environment can also trigger headaches, like fluorescent lighting, carpet fumes, gas leaks, etc.


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YoloGx Rookie
Depending on how long you've been gluten-free, the headaches may be a result of damage from gluten. If so they should subside as you continue being gluten-free. However, do watch out for other intolerances, such as dairy, eggs, meat, corn, soy, peanuts, nightshades, etc. These are just some of the most common allergenic foods. It is highly recommended to keep a food journal, so that you can see if there is a relationship between the headaches and the foods you eat. Also, supplements can go a long way in this regard, so you might find some nutritional supplementation very effective. I've read magnesium is very helpful for many people, which makes sense since statistically, something like 70% of Americans have a deficiency in magnesium.

And of course, avoid things like aspartame.

Though probably less likely, things in your environment can also trigger headaches, like fluorescent lighting, carpet fumes, gas leaks, etc.

apart from what everyone else has suggested, I find doing Yoga and massaging my neck really helps. For something bad I use either a tennis ball or a toy cat tennis ball (which is nicer since its smaller) and roll around on the floor with it to iron out all those crunchy achey places. The meditative practice of yoga helps calm the mind as well.

I agree about the gluten and other intolerances etc. I had a small piece of my brother's gluten-free Chocolate cake and got a bad headache after. I don't know if it actually had gluten in it or if it was just the (for me) dreaded but addictive chocolate plus sugar and eggs.

Other than that, here's some herbal suggestions: taking skullcap regularly helps both calm and strengthen the nervous system. Lavendar, rosemary and mellissa or some other mint with chamomile makes for a refreshing and calming herbal tea that I've found helps heal the headache--especially if you put the skullcap in it too. Valerian can be used when you really need to relax. Just don't drive right afterwards since it will help you sleep. Passion flower also helps calm one and reduce headaches (and help you sleep), as does California Poppy. For some hops can help.

An old trick I used to use for my migraines was to put my hands and feet into pans of hot water. It pulls the excess blood out of the brain. I found putting 1/2 teaspoon cayenne powder in water and gulping it down helped too--though its not for the fainthearted--and requires a strong stomach. It creates quite a jolt but that shock can sometimes cure a headache.

Hope this helps!

bon appetit Newbie

Wow!

Thank you everyone! I've been reading so many books and they just keep saying no to this and that without making it clear what is OK...You're help is invaluable. It is also very nice to know that I'm not alone.

I was wondering something else, while I'm gluten free the rest of the house isn't and I am for better or worse the cook is it OK to touch wheat etc. as long as I wash up afterwards?

flourgirl Apprentice

In our house it's just hubby and me. For breakfast and lunch he eats what he wants. Dinner is a meal we share....so we eat EVERY dinner gluten free. We are extremely careful about cleaning up everything that has even a remote chance of contact with gluten. I bet I scrup the countertops at least 3 times a day! And yes...you must for your own sake wash your hands if you have touched anything with gluten. It's not so much that you will absorb it through your skin....but you don't want to take the chance of getting even a tiny bit in your mouth.

Hopefully you have a seperate toaster, cutting board for yourself. We keep seperate peanut butter, margerine or anything else that the gluten eaters might accidentally contaminate, or be tempted to dip a utensil into after touching their food (bread, crackers, whatever).

Hope this helps some. Good luck and fast healing!

huck-888 Newbie

I got diagnosed last fall, and we decided as a family to switch to totally gluten-free. My kids don't complain too much (who knew My Little Pony Snacks would be gluten-free), and my husband can go out to lunch and get his wheat bread fix. When we had gluten in the house I was always worried every time I touched a light switch, the TV remote, the sink spout....whatever, that it would have gluten on it. Easiest to just not worry about it. I highly recommend talking to your family about getting it out of the house. It is so nice to not have to be concerned about it at home!

larry mac Enthusiast

A statement such as "most (headache) pills have gluten" is IMHO very over generalized, and most likely over exagerated. I take generic acetaminophen and iboprofen and have not had a problem.

best regards, lm

gfp Enthusiast
A statement such as "most (headache) pills have gluten" is IMHO very over generalized, and most likely over exagerated. I take generic acetaminophen and iboprofen and have not had a problem.

best regards, lm

True but it can seem that way sometimes !

Often generic seems less so than brand name. I guess because the pills are 'packaged' cosmetically ? Mostly 'own brands' seem better for being gluten-free and they have the added benefit of being cheaper ...

gfp Enthusiast
An old trick I used to use for my migraines was to put my hands and feet into pans of hot water. It pulls the excess blood out of the brain. I found putting 1/2 teaspoon cayenne powder in water and gulping it down helped too--though its not for the fainthearted--and requires a strong stomach. It creates quite a jolt but that shock can sometimes cure a headache.

Just a point .. migranes shouldn't really be put up with. They are actually dangerous (more so in men). Much as Yoga and herbal stuff can be great for mild headaches if you are getitng a migrane the best thinig is to treat it before it develops as they do a lot of damage to your system regardless once they do.

YoloGx Rookie
Just a point .. migranes shouldn't really be put up with. They are actually dangerous (more so in men). Much as Yoga and herbal stuff can be great for mild headaches if you are getitng a migrane the best thinig is to treat it before it develops as they do a lot of damage to your system regardless once they do.

I agree with you, if you find something that treats the situation use it. However sometimes that's easier said than done. I was too sensitive to take the usual drugs. Going off milk products (except for org. nonfat yogurt) and eggs seemed to resolve it finally for me. However it took years to figure that out. Going off gluten of course also helped greatly but did not do the whole trick. Even now when I get CC'd or am otherwise poisoned it can come back--but I find for me the Yoga and pinpointed muscular manipulation (not massage-more like pressure point and not on the head itself) really does help go along way in doing the trick. I think taking magnesium and more absorbable calcium helps me too plus detox herbs.

And yes I used to get 1/2 my face swollen, visual distortion & extreme pain way too frequently. It seems all the women in my family get it and I am pretty sure its connected for them too with the celiac and other food sensitivities as it was for me. I am not as familiar with men getting migraines as women, even though I know they do.

Again as far as yoga goes, they find meditation of whatever form changes one's brain chemistry positively and for some quite powerfully. Too often migraine sufferers tend to be perfectionists after all--so we carry around a lot of stress that needs to be relieved.

bon appetit Newbie

I was wondering if anyone can remember; if before they went gluten free and during that transition to gluten free, if they were forgetful and not as mentally agile, because aside from being cripplingly tired I feel like my mind is on strike and I was just wondering when and or if I can expect this situation to improve.

With regards the cooking situation, I'll have to find a way to get it out of the house when I was making pizza last night I mindlessly scattered flour over the counter so it wouldn't stick and as I watched the flour fly up into the air and drift it occurred to me I am a complete bone head - see not that bright at the moment.

Oh and one more thing I have lost twenty pounds in the last two weeks but I feel like I've gained 20 I am so uncomfortable any ideas on a way to get rid of the bloating?

Wish me luck I'm going for an endoscope in the next couple of days to look for cancer because on top of this joy I have bleeding ulsers and a liteny of other issues.

P.S. Thanks for all of you help, I have so many questions and my doctor tends to stare blankly when I ask about Celiac. Much love and good wishes to everyone...

Gwen B Rookie

sorry to hear you're not feeling better on this diet. As for the bloating, have you given up dairy and soy yet. It took me a few months to figure that out but it has fixed that problem, although I also am now avoiding Tapioca in gluten-free foods like bread (and most snacky type stuff) and I'm not sure how digestible Carigeenan (in some rice/almond/hemp milks) is for me. From what people have said on this forum, it is generally recommended to give up at least dairy for a few months to allow your system to heal. I think maybe 50% of celiacs may become intolerant to dairy. With your other tummy issues you might want to just eat simple food, just light fish, meat, vegetables and a little fruit for a few weeks to see if that helps. Lightly cooked vegetables and fruit may be more digestible than raw for a while, enzyme and probiotic supplements help a lot of people but I would check that with your Dr before trying them out on ulcers!

The dog tiredness, I don't know! I have been gluten-free for 5 months now and although my digestive issues have been resolved, I am soooooooo tired and weak. My arms and legs actually feel heavy even when I wake first thing in the morning. I also feel quite lightheaded, dizzy, and generally spaced out. I don't know if it's some peculiar virus I've had that has affected my inner ear or thyroid problem or what. I may try the magnesium supplement. It is really wearing me down. :(

Sympathy :blink:;)

babysteps Contributor

definitely was tired & getting more & more fuzzy-brained before going gluten-free. Also bloated

better on all now.

For me, I also have to watch out for how much sugar I have, especially later in the day - or I will go almost narcoleptic on the couch before bed. But gluten-free and without too much sugar (one cookie, okay; 3 cookies, night-night) I am awake until I get into bed. Also sleep better.

I also had the initial dairy intolerance on gluten-free diet - but okay with dairy now :)

I didn't get my skin all the way calmed down until I eliminated personal care products with gluten or fragrance (including shampoo, soap, etc.) - but many do not have skin issues like that. I rarely get headaches, but do get fragrance-triggered ones (going back at least to high school).

Did a 'caveman' type diet in January for 3 weeks with my spouse (meat, fresh veggies, fresh fruit, fresh herbs, rice, tiny bit of oil - that's it, no other grains, no spices or salt, no dairy, lots of water) and that made me think I had all kinds of new sensitivities or CC, but then I realized a lot of it was more likely old toxins leaving my body (mostly skin reactions - thank goodness no D). So the 'detox' from gluten can definitely make you feel more sensitive, before you get better.

Hang in there! Keep a food diary and be aware of any new and/or temporary sensitivities as your body heals.

YoloGx Rookie
sorry to hear you're not feeling better on this diet. As for the bloating, have you given up dairy and soy yet. It took me a few months to figure that out but it has fixed that problem, although I also am now avoiding Tapioca in gluten-free foods like bread (and most snacky type stuff) and I'm not sure how digestible Carigeenan (in some rice/almond/hemp milks) is for me. From what people have said on this forum, it is generally recommended to give up at least dairy for a few months to allow your system to heal. I think maybe 50% of celiacs may become intolerant to dairy. With your other tummy issues you might want to just eat simple food, just light fish, meat, vegetables and a little fruit for a few weeks to see if that helps. Lightly cooked vegetables and fruit may be more digestible than raw for a while, enzyme and probiotic supplements help a lot of people but I would check that with your Dr before trying them out on ulcers!

The dog tiredness, I don't know! I have been gluten-free for 5 months now and although my digestive issues have been resolved, I am soooooooo tired and weak. My arms and legs actually feel heavy even when I wake first thing in the morning. I also feel quite lightheaded, dizzy, and generally spaced out. I don't know if it's some peculiar virus I've had that has affected my inner ear or thyroid problem or what. I may try the magnesium supplement. It is really wearing me down. :(

Sympathy :blink:;)

I was thinking about this last night after finally being well enough to have some insomnia and aching legs etc. again. My digestion is slowly improiving from the antibiotics esp. since I am taking several doses of pro-biotics. Which is helping but is not enough for my nervous system. And then I realized I either needed to eat something that had b vitamins in them (like sprouted sunflower seeds) or take them. So I took the B's (Country Life co-enzyme ones for me) and I could sleep. Felt fine waking up. Not spacey or achey like I was all day yesterday, reminding me how I often used to feel all the time.

I was so stripped from illness and not being able to digest from the antibiotics. I think its similar to what you describe and what I go through now after the D stops if CC'd. Taking vitamin D, magnesium, absorbable calcium, liquid trace sea minerals and kelp also helps me since I tend to be so stripped of minerals in general. That plus drinking skullcap, lavender, rosemary tea to rebuild, calm and gently boost the nervous system. And behold I could sleep and feel better today. So it does help. Let me know if this helps you too!

Bea

Gwen B Rookie
I was thinking about this last night after finally being well enough to have some insomnia and aching legs etc. again. My digestion is slowly improiving from the antibiotics esp. since I am taking several doses of pro-biotics. Which is helping but is not enough for my nervous system. And then I realized I either needed to eat something that had b vitamins in them (like sprouted sunflower seeds) or take them. So I took the B's (Country Life co-enzyme ones for me) and I could sleep. Felt fine waking up. Not spacey or achey like I was all day yesterday, reminding me how I often used to feel all the time.

I was so stripped from illness and not being able to digest from the antibiotics. I think its similar to what you describe and what I go through now after the D stops if CC'd. Taking vitamin D, magnesium, absorbable calcium, liquid trace sea minerals and kelp also helps me since I tend to be so stripped of minerals in general. That plus drinking skullcap, lavender, rosemary tea to rebuild, calm and gently boost the nervous system. And behold I could sleep and feel better today. So it does help. Let me know if this helps you too!

Bea

Thanks,

I'm going to get some of those today. I know what you know about the vit craving. I've been drinking green smoothies most days, I use Kale often but it while it has improved my digestion of raw foods, I'm still fatigued and fogged :( The B's are they subligual? Does that mean they come in lactose? Not sure about vit D as it can build up in your system and I think I was OK on that one last fall. Not heard of trace sea minerals but I had thought about kelp so I'm off to Wholefoods!

How do you make the tea? With own fresh herbs or dried or bought blend?

gfp Enthusiast
I agree with you, if you find something that treats the situation use it. However sometimes that's easier said than done. I was too sensitive to take the usual drugs. Going off milk products (except for org. nonfat yogurt) and eggs seemed to resolve it finally for me. However it took years to figure that out. Going off gluten of course also helped greatly but did not do the whole trick. Even now when I get CC'd or am otherwise poisoned it can come back--but I find for me the Yoga and pinpointed muscular manipulation (not massage-more like pressure point and not on the head itself) really does help go along way in doing the trick. I think taking magnesium and more absorbable calcium helps me too plus detox herbs.

And yes I used to get 1/2 my face swollen, visual distortion & extreme pain way too frequently. It seems all the women in my family get it and I am pretty sure its connected for them too with the celiac and other food sensitivities as it was for me. I am not as familiar with men getting migraines as women, even though I know they do.

Again as far as yoga goes, they find meditation of whatever form changes one's brain chemistry positively and for some quite powerfully. Too often migraine sufferers tend to be perfectionists after all--so we carry around a lot of stress that needs to be relieved.

Yolo, my comment asn't really directed at you (as much as people reading the thread)

However its interesting that you say it comes back when glutened.

I used to get a migrane at least once a month and it would last up to 2-3 days on occaisions.

Now they are a thing of the past except very infrequently when I'm glutened ....

Anyway, they are the number 1 cause of strokes in young to middle aged men (they are no less dangerous as you get older but other things become number 1)

I'm so glad they are behind me now as long as I don't get glutened ...

I'm not a great one for dropping meds at the drop of a hat but .... these are one thing i don't mess about with ....

Unfortunately .. the ones which work best tend to be restricted and even though my GP can prescribe coedine she has to be careful how much or it attracts attention.

The shame is (IMHO) that many over the counter meds like tylenol, asprin and ibuprofen do serious organ damage before they are actually VERY effective.

Also because of the way many are metabolised you need to take a full dose not take a little and see how it goes for any pain that gets worse by itself...

(I guess I need to explain that)

I headache can cause a worse headache simply by the pain and stress so taking a tiny dose often does nothing but taking th rest later messes with its metabolism so you never get enough to be useful but you do get enough to stress your kidneys or liver or stomach (depending on the meds).

Its always a hard call of course but I usually either put up with it and try and relax or take a decent dose since anything inbetween just messes up (i.e. it would have gone away anyway or it wouldn't)

larry mac Enthusiast
..... Combined with Promethazine which doesbles the efficiency of conversion into morphine in the liver it is quite effective so long as you don't need to drive etc.

Promethazine can be bought over the counter in the UK as an allergy med so I can get double the effect while my GP doesn't need to prescribe as much Class A ...

Very interesting info gfp.

I was in extreme pain following outpatient surgery in October. I was given hydrocodone upon leaving the hospital, but that night it was clearly not sufficient. So my surgeons nurse called me in some Talwin pain med, and some Phenergan (Promethazine) for potential nausia from the Talwin, so she said (she is a very kind lady and I tried to give her a very thoughtful Christmas present)). All I can say is the combination finally knocked my ass out. You can't feel pain when you are definately asleep.

best regards, lm

YoloGx Rookie
Thanks,

I'm going to get some of those today. I know what you know about the vit craving. I've been drinking green smoothies most days, I use Kale often but it while it has improved my digestion of raw foods, I'm still fatigued and fogged :( The B's are they subligual? Does that mean they come in lactose? Not sure about vit D as it can build up in your system and I think I was OK on that one last fall. Not heard of trace sea minerals but I had thought about kelp so I'm off to Wholefoods!

How do you make the tea? With own fresh herbs or dried or bought blend?

Hi Gwen,

The tea can be all or any one of those items, though the skullcap is the best to keep taking on a regular basis since it soothes and rebuilds the nervous system the most. However for all or any one of them just use the fresh or dried herb, put in a pot or thermal resistant glass jar, cover with boiling water and then a lid and steep for 5 to 15 minutes (best w/15). Skullcap taken in capsule form works well too so you take it more regularly.

The co-enzyme B's I take are from Country life--and are not sublingual. I don't do well with the sorbitol the sublinguals have. Take away from food on an empty stomach. If you can handle Brewere's Yeast (no here's a question--is it tainted with gluten or not?? Most beer is made using Malt after all) or some other fermented such product used in 'B vitamin manufacture that would work too. Its the usual ones derived from coal tar that I have noticed are so hard to make use of.

Bea

YoloGx Rookie

However its interesting that you say it comes back when glutened.

I used to get a migrane at least once a month and it would last up to 2-3 days on occaisions.

Now they are a thing of the past except very infrequently when I'm glutened ....

...

Unfortunately .. the ones which work best tend to be restricted and even though my GP can prescribe coedine she has to be careful how much or it attracts attention.

The shame is (IMHO) that many over the counter meds like tylenol, asprin and ibuprofen do serious organ damage before they are actually VERY effective.

I headache can cause a worse headache simply by the pain and stress so taking a tiny dose often does nothing but taking th rest later messes with its metabolism so you never get enough to be useful but you do get enough to stress your kidneys or liver or stomach (depending on the meds).

Its always a hard call of course but I usually either put up with it and try and relax or take a decent dose since anything in between just messes up (i.e. it would have gone away anyway or it wouldn't)[/quote)

Hi gpf,

No offense taken. Its just your comments were a little pointed to what I had said using non usual ways to deal with pain overall.

My kidneys were badly damaged years ago which is why I don't like to rely on ibuprofin and tylenol, plus I am actually allergic to aspirin and most antibiotics (though there is one kind I can have and have had recently--but this for me is a rarity since I am less than anxious to go on them willy nilly for obvious reasons).

Thus my search for alternatives, as you might well understand. We all take our own brand of risks. Taking fibronylitic enzymes and garlic regularly greatly reduces my chances of getting a blood clot as well as gets rid of scar tissue both in injured muscles and villi by the way.

Yes it is interesting about the gluten thing for both of us and the migraines. Recently I found I was getting glutened by my job working on renovating old houses using plaster that has starch in it as well as a variety of other materials!! I thought it was damaged elbows and scar tissue in my neck etc. that couldn't handle certain activities! I would get the most excruciating headaches afterwards. Interestingly using the miniature tennis ball right in my lymphatic area under the arm where the shoulder joint ends right there helped relieve the pain the most. Though as I said lymphatic drain and liver herbs did well too. Plus of course the Yoga and careful self manipulation of my neck. Kind of makes sense when you think of it, eh?

And oh, I forgot. I used to make feverfew tea and found it really did help against migraines. But avoiding the allergens helps even more! The straight herb from the bush worked better than the

tincture by the way. Now I know why since the tincture was made with (gluten infected) alcohol.

gfp Enthusiast
Hi gpf,

No offense taken. Its just your comments were a little pointed to what I had said using non usual ways to deal with pain overall.

Sorry it wasa quick answer before work!

My kidneys were badly damaged years ago which is why I don't like to rely on ibuprofin and tylenol, plus I am actually allergic to aspirin and most antibiotics (though there is one kind I can have and have had recently--but this for me is a rarity since I am less than anxious to go on them willy nilly for obvious reasons).

As I said, most over the counter pain meds have a rather stressing effect on one organ or another.

Because of the connection between "pleasure" and "pain relief" there is actually a lot of bias against the more effective ones which are also seen as recreational drugs. Codeine is far less bad for you than tylenol or asprin on a pain for pain-relief basis but authorities like the FDA worry that because it is addictive people will abuse it. Unfortunately ... when people are in severe pain they will also overdose on asprin or tylenol.

Thus my search for alternatives, as you might well understand. We all take our own brand of risks. Taking fibronylitic enzymes and garlic regularly greatly reduces my chances of getting a blood clot as well as gets rid of scar tissue both in injured muscles and villi by the way.

More importantly they actually deal with the issue NOT simply relieve it.

Recent research shows the damage from migranes can be very similar to mini-strokes and some research actually classifies them as mini-strokes with the same brain damage caused.

And oh, I forgot. I used to make feverfew tea and found it really did help against migraines. But avoiding the allergens helps even more! The straight herb from the bush worked better than the

tincture by the way. Now I know why since the tincture was made with (gluten infected) alcohol.

I might have to look into this ...

Very interesting info gfp.

I was in extreme pain following outpatient surgery in October. I was given hydrocodone upon leaving the hospital, but that night it was clearly not sufficient. So my surgeons nurse called me in some Talwin pain med, and some Phenergan (P) for potential nausia from the Talwin, so she said (she is a very kind lady and I tried to give her a very thoughtful Christmas present)). All I can say is the combination finally knocked my ass out. You can't feel pain when you are definately asleep.

I believe it does both .... the fact you already took the hydrocodone is probably the reason. You can only metabolise so much in a certain time ... the promethazine increases metabolism of the hydrocodone (more is converted to morphine in the liver) ... However as above ... they could have just given you morphine to start out but its "frowned upon" ..

I think mostly its so much covering their ass ... my bet is the surgeon would have a colleage prescribe morphine if they had the post op pain but for a patient they give something less overtly contravertal?

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      Welcome, @Morgan Tiernan, The best thing to clear my dermatitis herpetiformis is to take Niacin, Vitamin B 3, the form called nicotine acid, the kind that causes flushing of the skin.  Flushing Niacin clears my skin quickly.   Yes, the flushing might seem really strange, but it opens the tiny capillaries in the surface of the skin which helps remove the antibodies that gather in those pustules.  The flushing lessens the longer Niacin is taken, but still works at keeping the blisters away.   Be sure to take a B Complex and Benfotiamine, a form of Thiamin , Vitamin B 1.  Covid, shingles and other infections like strep throat deplete our Thiamine quickly.  Having frequent infections can indicate low Thiamine.  We have a higher metabolic demand during infections, physical trauma or surgery, emotional and mental stress, and while physically active like dancing.    Thiamine has anti-virus and antibacterial properties.  The eight essential B vitamins work together.  Taking Benfotiamine in addition to the B Complex is safe and nontoxic.  Excess B vitamins are easily excreted because they are water soluble.  New Celiacs are often low in vitamins and minerals due to malabsorption.  Vitamin D can help calm the immune system.  Following a low histamine Paleo diet , like the Autoimmune Protocol Diet by Dr. Sara Ballantyne, a Celiac herself, is also very helpful.  Steroids lower histamine, but the low histamine AIP diet is safer.   This research may be old, but Flushing Niacin does work!!! Nicotinic acid therapy of dermatitis herpetiformis https://pubmed.ncbi.nlm.nih.gov/15412276/  
    • Morgan Tiernan
      Hey @Rogol72! thanks for your very helpful response. Those videos are great and super educating! I’ve forwarded them to my family members too as often it can be very difficult to explain to those around you just what you’re going through. Though, I’m fortunate that they’re super supportive and keen to help me get to the bottom of the problem. Interesting how you mentioned soaps and shower gels irritating too! Is it better to rinse off the sweat straight after exercising just with some cool water? Additionally, is minimising soap in those areas during showering helpful too? Or is there a particular soap that may be helpful! I have some more questions about dapsone too, if you don’t mind me asking. As mentioned in my response to Trents, I take prednisolone for when I am glutened or when my symptoms become too unbearable. With oral steroids it’s usually a 4 week dose as I have to reduce my dose to slowly come off them. How long can you take dapsone for? Can it impact your immune system in the same way as oral steroids (I have to be super careful I don’t pick up any infections whilst on my steroids as my immune system is compromised.) Yes, I’m from South Wales in the UK. Though my grandfather is Irish, explaining my surname (very well spotted!)
    • Morgan Tiernan
      Hi Trents, thank you so much for your help and support. Yes it’s not ideal from my surgery practice. This is just one of the many problems I have experienced with them, we’ve had to pay to go to a private consultant now instead (I’m from South Wales in the UK, spot on about the spelling of “coeliac”! I completely forgot there was another way of spelling it around the world!) The dermatologist I have been seeing over the last few months has been amazing. And thank goodness for places like google and forums like these, I don’t think I would’ve ever thought it could be gluten! Interesting about the iodine. I’ll definitely start to limit this out of my diet. It makes sense as the places of irritation are places I sweat or pressure points (wrists, waist etc.) Dapsone was mentioned in my last appointment also. He’s reluctant to put me on it just yet, probably just until this biopsy is done so we can confirm for definite. At the moment I’m being put on prednisolone (oral steroids) every time I either become glutened or my symptoms reach an ultimate. I think he’s said if I need to be in them for any more than 3 times a year, dapsone will be more considered. I’m keen to go on it as every time I come off the prednisolone I can see the blisters creeping back. I’ve got loads that have burst on my hairline. I also start to get flaky/peeling skin as well which I’m not sure is related?    As well as limiting iodine, is there anything else that might help irritation with sweat? Is it better to wear more loose fitted clothing? Can I apply something to stop the irritation of sweat whilst i’m exercising?    Thanks for all your help so far! I will keep you all updated on my journey! 
    • Lynnard
      Thank you - that makes perfect sense and I understand. celiac disease is an autoimmune disease which will cause further damage while gluten sensitivity is different. Based on my symptoms and bloodwork, I am almost certain I have celiac disease.  I kind of hate to hope for a positive biopsy but a negative one would be frustrating for sure. Regardless, I have done a lot of research on gluten-free diet and am prepared to begin a new lifestyle journey - with a lot of questions along the way.  I appreciate your information and advice! 
    • trents
      Let's talk about terminology for the sake eliminating (as much as possible) confusion. Unfortunately, the terms "gluten sensitive" and "gluten intolerant" have, historically, been used indiscriminately. There are two primary categories of gluten disorders whose "official" terms are 1. celiac disease and 2. Non Celiac Gluten Sensitivity or NCGS for short.  I believe there is an evolution toward using the term "gluten intolerance" to refer to celiac disease and "gluten sensitive" to refer to NCGS. I say that because the words "gluten sensitivity" are actually found in the official medical term for the non celiac medical disorder involving gluten. Does that make sense? The difference between celiac disease and NCGS is that celiac disease causes inflammation in the small bowel lining and (over time) does damage to it so that it becomes inefficient in absorbing nutrients from what we eat. This is the area of the intestinal track where all of our nutrients are absorbed. Of course, this can lead to any number of other medical problems. NCGS, on the other hand, does not cause inflammation or damage to the lining of the small bowel and therefore does not produce the antibodies that celiac disease antibody tests look for. Neither will NCGS, therefore, produce a positive biopsy result. NCGS and celiac disease, however share many of the same symptoms in the area of GI distress and NCGS is 10x more common than celiac disease. There is, at the present time, no defining test for NCGS so an NCGS diagnosis is arrived at by first eliminating celiac disease for which we do have tests for. Having said that, some experts believe that NCGS can be a precursor to celiac disease.  Yes, you are correct in stating that both conditions require a gluten free diet.  So, in the absence of official testing for celiac disease (and official testing done under the proper conditions) a person who is experiencing distress when consuming gluten cannot be certain whether they are dealing with celiac disease or NCGS. Not to have an official diagnosis of celiac disease while actually having the condition makes it difficult for some folks to stay on the gluten free bandwagon. It's just the psychology of the situation and wanting to rationalize away a very inconvenient and socially isolating medical condition.
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