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tonalynn

This Itchy Skin Has Got To Stop!

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Hi all,

 

I was diagnosed with celiac on October 1st of this year, and have been gluten free ever since. I've de-glutened my home, and have only eaten out 3 times since my diagnoses (I don't think I was cc'd but you never know).

 

Anyway, I have a terrible problem with itchy skin. It's not DH, as there is nothing wrong with the area of skin that suddenly itches. It can pop up anywhere (and does): mostly my arms, legs, wrists, chest, sides, pretty much wherever I have skin except my scalp.

 

It comes on completely randomly - my routine doesn't change. I work from home, so I'm here 90% of the time. It can strike if I'm home, asleep or awake, out and about, doesn't matter. Like I said, there is nothing wrong with my skin when it starts to itch - no redness, rash, bumps, scrapes, sores, lumps, discolorations, scales, flakes, lesions or infections. Nada!

 

Sometimes the itch may start light, like something brushed my skin. I'll unconsciously itch or rub it. Apparently, the itch gets really mad when I do that and then explodes into an extremely painful, prickly itchy sensation. It feels like millions of tiny pinches. I try as hard as I can not to scratch it, but if I don't, the painful prickles become so bad I involuntarily jerk whatever appendage is itching.

 

Once it was so bad and in so many places at once it woke me up and after trying slathering on thick moisturizer all over, I was forced to shower and scrub head to toe with a loofah.

 

I've tried anti itch creams, I use Cetaphil Moisturizer Cream, and I lotion up every time I get out of the shower. I tried icing the area. Sometimes I slap the area really hard for very temporary relief.  I only have Benedryl Allergy in my medicine cabinet, but have used that as a last resort.

 

This is driving me CRAZY!! I can't take it anymore. I've been gluten-free for 12 weeks now, it can't still be the gluten...can it?

 

Anyone else experience this? Any suggestions or advice before I scratch myself down to the bone?

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A home humidifier. I don't know how old you are, but I noticed the itchiness starting when I was in my 40's. I never used to get that way when I was young. Then again, maybe it wasn't age, but celiac. I do know though that while it gets worse in winter, I still itch somewhat during the summer. And lotions don't really help. But keeping the humidity in my house (and my shop) at between 40 and 60 percent helps a lot.

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Thanks for the suggestion, Bartfull. I'm 43, but I've had this itchy weirdness for as long as I can remember. Any suggestions on the type of humidifier? I live in a rental, so I can't use a whole-house humidifier (like I would love to!) and don't know what else to look for.

 

Thanks!

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The sensations you are feeling sounds like the ones I get before I get DH breakouts.  It gets terribly sensitive, burns, tingles, etc.  Within several days I have breakouts.  It has been terribly cold here in MN and heat being on all the time causes for excess dryness in the air.  My skin has been really dry and itchy lately.  Have you ever had the skin eruptions or the hive like bubbles on your skin?  I also having a hard time finding something to calm it since the sensation seems to come from the inside.  I do use bag balm, vanicream, Gold bond lotion, aloe gel but with limited satisfaction.  If I get warm, my condition worsens.  I don't know that this helps you, but I have shared some info

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Thanks  Mendylou, but I don't have any hives, bubbles or eruptions where it itches. It's just normal, pinkish skin, nothing visibly wrong with it, both before and after the itching starts. It seems to like the softer parts of skin (the inside of my forearm for example) but it's not really picky. It will show up anywhere.

 

This is why I'm confused and frustrated - there seems to be absolutely NOTHING wrong with my skin - so why is it so darn itchy? It's to the point where I'm afraid to scratch anything, even if it's from something obvious, like the tag on my shirt, it might trigger the Monster Itch!

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I got mine at Ace Hardware but they look something like this: http://www.sears.com/kenmore-warm-mist-humidifier-w-medicine-tray-1.1/p-03231193000P?prdNo=8&blockNo=8&blockType=G8

 

I like them because you don't need to replace filters. I use distilled water because the water where I live is full of minerals which would plug up the unit and leave a white residue. If you put one in the bedroom and one in the living room or wherever you spend the most time, I'm sure it would help not only your skin, but your breathing too.

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Get your iron levels checked! My son was itchy when he was anemic. Also cc makes him itchy. Zyrtec helps. Make sure any vitamins, supplements, or meds are gluten-free.

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Hi all,

 

I was diagnosed with celiac on October 1st of this year, and have been gluten free ever since. I've de-glutened my home, and have only eaten out 3 times since my diagnoses (I don't think I was cc'd but you never know).

 

Anyway, I have a terrible problem with itchy skin. It's not DH, as there is nothing wrong with the area of skin that suddenly itches. It can pop up anywhere (and does): mostly my arms, legs, wrists, chest, sides, pretty much wherever I have skin except my scalp.

 

It comes on completely randomly - my routine doesn't change. I work from home, so I'm here 90% of the time. It can strike if I'm home, asleep or awake, out and about, doesn't matter. Like I said, there is nothing wrong with my skin when it starts to itch - no redness, rash, bumps, scrapes, sores, lumps, discolorations, scales, flakes, lesions or infections. Nada!

 

Sometimes the itch may start light, like something brushed my skin. I'll unconsciously itch or rub it. Apparently, the itch gets really mad when I do that and then explodes into an extremely painful, prickly itchy sensation. It feels like millions of tiny pinches. I try as hard as I can not to scratch it, but if I don't, the painful prickles become so bad I involuntarily jerk whatever appendage is itching.

 

Once it was so bad and in so many places at once it woke me up and after trying slathering on thick moisturizer all over, I was forced to shower and scrub head to toe with a loofah.

 

I've tried anti itch creams, I use Cetaphil Moisturizer Cream, and I lotion up every time I get out of the shower. I tried icing the area. Sometimes I slap the area really hard for very temporary relief.  I only have Benedryl Allergy in my medicine cabinet, but have used that as a last resort.

 

This is driving me CRAZY!! I can't take it anymore. I've been gluten-free for 12 weeks now, it can't still be the gluten...can it?

 

Anyone else experience this? Any suggestions or advice before I scratch myself down to the bone?

At last! I am NOT ALONE.  I have these exact symptoms you describe, tonalynn.  Drives me insane!!  no one understands or believes me.

 

I was diagnosed with Celiac Disease in November 2011.  I have been 99% gluten free for 2 years.  1 year ago I had the itching, but it turned out that I now have a citrus allergy, so eliminating citrus made the itching go away.  But now the itching is back and it's making me crazy.  

I don't know whether to call a doctor, or which doctor to call!!!  Allergist? Gastroenterologist? GP?  will one doc refer me back to one of the others...... is it worth even trying to call a doctor in the first place!  What else am I allergic to now!  they are slowly taking all foods I love away from me,.....   I worry that I may have liver disease, but there is no problem detected with standard blood work.

 

It's so bad that I want to just go outside in the cold (it's about 4 degrees Fahrenheit here) because it feels like the cold would make the itching stop, but the cold hurts so much too......

 

Today I have not eaten anything so far.  I did take my morning supplements, which I have taken for years and all are gluten free.  I am pondering not eating anything today, but my stomach is growling, and I have no will power when it comes to sitting around and not eating.....   

 

Questions in my mind today:  is it sugar?  I consumed very little sugar yesterday and still itch.   Caffiene? maybe. I had coffee yesterday.  Now I am afraid to even drink tea.  I have had no citrus, that is for sure!  

 

I sympathize with you!  I understand completely, what you have described!  YOU ARE NOT ALONE!!  and you are not crazy.

 

crazy, burning and itching, won't go away, no matter what, and there is not any kind of skin eruption or rash or anything to see..... not anemic, liver panel fine, no other blood work reveals anything wrong,........ this has been my life in the winter for so many years.

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Hi All-

A was wondering if anyone knows if Zyrtec OTC tabs are gluten free because they've taken them. The company hasn't tested them- only the gel tabs. My search brought up this post.  Those with unexplained itching should check out Irish Heart's post about MCAS, or read Dr. Jess' blog.  It's worth a looksee. 

http://www.thepatientceliac.com/2014/01/04/mast-cell-activation-syndrome-madness/

 

I've been itching for what seems like weeks now.  Only antihistamines help.  I have hives, but I also itch for no good reason with no hives present no matter what I eat.  Hence the Zyrtec question...

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Hmm, anti-histamines usually help with allergy symptoms.  I've heard coconut oil can help itching sometimes.  Might be worth a try.

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Have you considered a yeast infection?  Do you crave sweets?   I itch when I detox yeast.  I think I was detoxing yeast when I smelled it on my skin.  It usually occurs in me after discontinuing an unsafe food which I had been eating a lot of.  I believe that the yeast can have a feast on undigested foods. 

 

D

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Hi all,

 

I was diagnosed with celiac on October 1st of this year, and have been gluten free ever since. I've de-glutened my home, and have only eaten out 3 times since my diagnoses (I don't think I was cc'd but you never know).

 

Anyway, I have a terrible problem with itchy skin. It's not DH, as there is nothing wrong with the area of skin that suddenly itches. It can pop up anywhere (and does): mostly my arms, legs, wrists, chest, sides, pretty much wherever I have skin except my scalp.

 

It comes on completely randomly - my routine doesn't change. I work from home, so I'm here 90% of the time. It can strike if I'm home, asleep or awake, out and about, doesn't matter. Like I said, there is nothing wrong with my skin when it starts to itch - no redness, rash, bumps, scrapes, sores, lumps, discolorations, scales, flakes, lesions or infections. Nada!

 

Sometimes the itch may start light, like something brushed my skin. I'll unconsciously itch or rub it. Apparently, the itch gets really mad when I do that and then explodes into an extremely painful, prickly itchy sensation. It feels like millions of tiny pinches. I try as hard as I can not to scratch it, but if I don't, the painful prickles become so bad I involuntarily jerk whatever appendage is itching.

 

Once it was so bad and in so many places at once it woke me up and after trying slathering on thick moisturizer all over, I was forced to shower and scrub head to toe with a loofah.

 

I've tried anti itch creams, I use Cetaphil Moisturizer Cream, and I lotion up every time I get out of the shower. I tried icing the area. Sometimes I slap the area really hard for very temporary relief.  I only have Benedryl Allergy in my medicine cabinet, but have used that as a last resort.

 

This is driving me CRAZY!! I can't take it anymore. I've been gluten-free for 12 weeks now, it can't still be the gluten...can it?

 

Anyone else experience this? Any suggestions or advice before I scratch myself down to the bone?

 

I have an allergy to wheat, which is different than celiac or gluten sensitivity. One of the symptoms is crazy itching. I don't get hives, but I feel itchy all over. Sometimes when exposed I will get tiny, almost unnoticeable bumps on my arms, I couldnt see them unless the lights hit a certain way but I guess they are hives but the itching is always there.  I had a shampoo with wheat in it and it would cause super itchy head, dandruff, and acne all down my back. You could get an allergy test done and find out what it causing it. I find the more I avoid an allergen which I get exposed the reaction is much worse than if I am kind of exposed all the time. So if you are have recently removed gluten and the itching started an allergy could be the cause. 

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I have itching under the skin. I can't figure out the triggers. But, I do get worse if I take a probiotic, get dehydrated, drink coffee--even decaf, and chew Nicorette gum (which I've pretty much quit. It is so annoying. It's like a burning itching all over. I have neuropathy too so sometimes I wonder if it's a nerve reaction like paresthesia. 

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Inside forearms sounds like eczema to me.  That said, my all over itchiness started to lessen after about 2 - 3 months gluten-free.  It recently came back, which I think may be due to a recent accidental glutening or to the very cold weather we're experiencing.  Also, before my dx, I think hormones played a part - are you perimenopausal?

 

If it focuses on area inside forearms near the visible vein, my guess would be gluten and it will go away soon.  However, if it's more generalized, especially in the crook of your elbow, my bet would be on eczema (another autoimmune disorder that can travel with Celiac), and I would start by NOT showering so much, and don 't use super-hot water.  And apply/re-apply often a cream like Cerave or Vanicream (I think that's the name).  If that doesn't help after a week or so, you may need a derm to check it out and prescribe a short-term steroid cream.

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Inside forearms sounds like eczema to me.  That said, my all over itchiness started to lessen after about 2 - 3 months gluten-free.  It recently came back, which I think may be due to a recent accidental glutening or to the very cold weather we're experiencing.  Also, before my dx, I think hormones played a part - are you perimenopausal?

 

If it focuses on area inside forearms near the visible vein, my guess would be gluten and it will go away soon.  However, if it's more generalized, especially in the crook of your elbow, my bet would be on eczema (another autoimmune disorder that can travel with Celiac), and I would start by NOT showering so much, and don 't use super-hot water.  And apply/re-apply often a cream like Cerave or Vanicream (I think that's the name).  If that doesn't help after a week or so, you may need a derm to check it out and prescribe a short-term steroid cream.

 

I would also get your liver and kidney function tested - in fact, it was this itching that led my dermatologist to recommend my GP run tests for liver and kidney function, and in the course of it my GP added Celiac to the testing panel, based on our conversation.  I credit this all with diagnosing my Celiac before it got really bad because I was only starting to get a variety of problems, all of which seemed, on surface, to be very disconnected.

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I'm going to echo Nikki2777 on this - I have been trying to find out why I have elevated liver enzymes, and in the process of researching it found that itchy skin is often associated with liver problems. Please go see a doctor and explain, and request liver enzyme "liver function" tests.

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Take the Zyrtec, it's safe and it works

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Thanks all, for the suggestions and the feedback. I had a full allergy panel done last summer, the only things that came up are gluten and almonds. I've since cut out both, (I also have the double gene for celiac).

 

I will ask my doctor about liver function when I see her at the end of the month, but my gut feeling is that it's not liver-related.

 

Just to clarify, the itchiness does not occur in the same place twice in a row, or all the time. Last week is was on one of my shins. There was nothing wrong with the skin when it started to itch, but there was by the time I got done with it! I had scratched so much the skin was bright red and I broke a lot of capillaries under the skin.

 

Two nights ago it was my left thigh, front and back. Actually, three areas there: right above my left knee, on the inside of my left thigh about 3/4 up, and right under where my butt ends and the back of my left thigh begins. The best way I can describe the feeling is like being poked by a needle...from the inside. Just those three spots. The itch didn't spread, but they did take turns hurting.

 

I spent about an hour alternating putting on Gold Bond Rapid Relief Itch Cream, itching, slapping the itch and finally took a Benedryl. While I was waiting for that to start working, I tried freezing the area with an ice pack. Picture me standing in my kitchen at 2:30 in the morning, holding a big ice pack on the front of my thigh, but it wasn't big enough for all 3 areas, so I had to hold a bag of frozen corn to the back of my thigh!

 

After about 20 minutes, my skin was numb enough that the itching wasn't hurting and causing my muscles to involuntarily jerk. I was finally able to sleep. That area hasn't itched since.

 

It's getting to the point I'm afraid to scratch anything below my neck! Sometimes I can scratch something that's tickling and it goes away. Most of the time, I've set off a chain reaction. It's not just a winter thing - it's year round.

 

After 4 months of being gluten/almond free, if it was either of those causing the itch, don't you think it would have stopped by now? As for the person who asked if it might be yeast related and if I was craving sweets - I'm not sure if it's yeast or not, good question. As for sugar, I'm ALWAYS craving that! ;-)

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As an update to this thread, I saw my naturopath today. I just happened to be having one of my itching episodes on my left forearm right before the appointment started, so she was able to see that the skin was undamaged or different in anyway.

 

She explained it's because I'm having issues with my liver. She palpated my liver and said it was a bit enlarged, probably irritated from the gallstone problems I've had over the weekend. She mentioned that itchy skin is one of the first signs that something is going on with your liver.

 

She recommended a cod liver oil heat pack where my liver is for 20 minutes, several times a day. I'm going to give it a try tonight. If the answer to my itchy skin is to make my liver happy - I'm all for it! :-)

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I would also get your liver and kidney function tested - in fact, it was this itching that led my dermatologist to recommend my GP run tests for liver and kidney function, and in the course of it my GP added Celiac to the testing panel, based on our conversation.  I credit this all with diagnosing my Celiac before it got really bad because I was only starting to get a variety of problems, all of which seemed, on surface, to be very disconnected.

Little late here but Liver Function tests are probably a good thing to check. People who have liver issues, permanent or temp, tend to have itchy skin.

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I just posted a question for recommendations for dermatologist/dr in Denver area due to rash head to toe and ITCHY. Forgot to mention - have eaten gluten-free for 6 months? (strict & started for thyroid). And skin biopsy was done, but came back negative (was it done incorrectly?) and currently see endo, md, etc due to Hashimotos to regulate thyroid (5 + yrs). Is this itchy red rash due to Thyroid or food reaction? Do other grain sensitivities cause dermatitis hepaformis, or only gluten? As of now, eating totally grain, egg, dairy free (started week ago,and no change so far). Thanks

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Thanks all, for the suggestions and the feedback. I had a full allergy panel done last summer, the only things that came up are gluten and almonds. I've since cut out both, (I also have the double gene for celiac).

 

I will ask my doctor about liver function when I see her at the end of the month, but my gut feeling is that it's not liver-related.

 

Just to clarify, the itchiness does not occur in the same place twice in a row, or all the time. Last week is was on one of my shins. There was nothing wrong with the skin when it started to itch, but there was by the time I got done with it! I had scratched so much the skin was bright red and I broke a lot of capillaries under the skin.

 

Two nights ago it was my left thigh, front and back. Actually, three areas there: right above my left knee, on the inside of my left thigh about 3/4 up, and right under where my butt ends and the back of my left thigh begins. The best way I can describe the feeling is like being poked by a needle...from the inside. Just those three spots. The itch didn't spread, but they did take turns hurting.

 

I spent about an hour alternating putting on Gold Bond Rapid Relief Itch Cream, itching, slapping the itch and finally took a Benedryl. While I was waiting for that to start working, I tried freezing the area with an ice pack. Picture me standing in my kitchen at 2:30 in the morning, holding a big ice pack on the front of my thigh, but it wasn't big enough for all 3 areas, so I had to hold a bag of frozen corn to the back of my thigh!

 

After about 20 minutes, my skin was numb enough that the itching wasn't hurting and causing my muscles to involuntarily jerk. I was finally able to sleep. That area hasn't itched since.

 

It's getting to the point I'm afraid to scratch anything below my neck! Sometimes I can scratch something that's tickling and it goes away. Most of the time, I've set off a chain reaction. It's not just a winter thing - it's year round.

 

After 4 months of being gluten/almond free, if it was either of those causing the itch, don't you think it would have stopped by now? As for the person who asked if it might be yeast related and if I was craving sweets - I'm not sure if it's yeast or not, good question. As for sugar, I'm ALWAYS craving that! ;-)

Hi Tonalyn, Im new here.

I am 38 and was confrimed celiac disease at 34. Interesting to read your post. Over the last few years I have slowly been peicing together certain symtoms. For me personally- If I get trace amounts of gluten I get itchy beyond belief-like make myself bleed itchy. This lasts around three months!! Then as long as I'm careful it will go away completly-not a scratch. If I get a good dose of gluten...we all know the story there. But this is how I know Ive had a small amount and its usaully from an additives etc. Oh and I have had the most terrible nightmares as long as I can remember-They completly dissapear when I'm gluten-free...

 

Kind regards

 

Wayne

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Hi everyone,

 I joined this group so I could add my two cents to the discussion and some readers may have my similar problem. My background is Hashimotos thyroiditis diagnosed in 2006, doc suggested in 2009 my wrist to elbow both arm ever present itchy rash could be due to gluten (Dermatitis Herpetiformis) and yup! cutting out gluten made it go away. I had a Cyrex Labs Cross Reactive protein test (ordered by my nutritionist) in November 2015 and  all the grains I was still eating came up positive--oats, sorgum, rice, plus buckwheat, tapioca and dairy protein.  Before I gave all those up, I drank a bottle Green's Double Dark beer (made with: Water, millet, buckwheat (soba), brown rice, sorghum, hops, yeast) and partway in, I had head to toe itching for more than 24 hours but no rash. Since cutting out all those things from my test, I have been better, but the rotisserie chicken at Safeway has rice starch in it and also causes head to toe itching. I found rice starch in one of my supplements and tapioca starch in another, so now I have culled out all the supplements containing bad ingredients for me. Then I drank a cup of Dandy Blend last night (claims to be gluten free even though it contains barley and rye) and the itching started up again right after finishing the cup. It has been 24 hours and I am still a bit itchy.

Anyway, my suggestion is to get tested for allergens or just cut out all grains and dairy if you are having these head to toe no rash itchy problems!

Colleen

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Your itching may be due to nerve damage. (neuropathy)  I would ask your doctor about a medication like gabapentin to see if it helps your symptoms improve.

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I had the same, and it was related to foods, but also heat. As soon as I lay down under the coves in bed it would break out. I'd go take cold showers and that helped a lot. Taking anti histamines for allergies help a TON too. Combine it with cold showers and you are in paradise. I'd try that if I were you, if only temporarily. I had itching that could last up to 12 hours, all over the body, constantly. I'd lay awake all night just itching, but I usually didn't give into the urge to scratch. Because it just gets way worse, so I always tried to ignore it or kept myself busy on the computer if it was extremely unforgiving. Going silently insane. I feel your pain.

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    Jefferson Adams
    Celiac.com 06/20/2018 - Currently, the only way to manage celiac disease is to eliminate gluten from the diet. That could be set to change as clinical trials begin in Australia for a new vaccine that aims to switch off the immune response to gluten. 
    The trials are set to begin at Australia’s University of the Sunshine Coast Clinical Trials Centre. The vaccine is designed to allow people with celiac disease to consume gluten with no adverse effects. A successful vaccine could be the beginning of the end for the gluten-free diet as the only currently viable treatment for celiac disease. That could be a massive breakthrough for people with celiac disease.
    USC’s Clinical Trials Centre Director Lucas Litewka said trial participants would receive an injection of the vaccine twice a week for seven weeks. The trials will be conducted alongside gastroenterologist Dr. James Daveson, who called the vaccine “a very exciting potential new therapy that has been undergoing clinical trials for several years now.”
    Dr. Daveson said the investigational vaccine might potentially restore gluten tolerance to people with celiac disease.The trial is open to adults between the ages of 18 and 70 who have clinically diagnosed celiac disease, and have followed a strict gluten-free diet for at least 12 months. Anyone interested in participating can go to www.joinourtrials.com.
    Read more at the website for Australia’s University of the Sunshine Coast Clinical Trials Centre.

    Source:
    FoodProcessing.com.au

    Jefferson Adams
    Celiac.com 06/19/2018 - Could baking soda help reduce the inflammation and damage caused by autoimmune diseases like rheumatoid arthritis, and celiac disease? Scientists at the Medical College of Georgia at Augusta University say that a daily dose of baking soda may in fact help reduce inflammation and damage caused by autoimmune diseases like rheumatoid arthritis, and celiac disease.
    Those scientists recently gathered some of the first evidence to show that cheap, over-the-counter antacids can prompt the spleen to promote an anti-inflammatory environment that could be helpful in combating inflammatory disease.
    A type of cell called mesothelial cells line our body cavities, like the digestive tract. They have little fingers, called microvilli, that sense the environment, and warn the organs they cover that there is an invader and an immune response is needed.
    The team’s data shows that when rats or healthy people drink a solution of baking soda, the stomach makes more acid, which causes mesothelial cells on the outside of the spleen to tell the spleen to go easy on the immune response.  "It's most likely a hamburger not a bacterial infection," is basically the message, says Dr. Paul O'Connor, renal physiologist in the MCG Department of Physiology at Augusta University and the study's corresponding author.
    That message, which is transmitted with help from a chemical messenger called acetylcholine, seems to encourage the gut to shift against inflammation, say the scientists.
    In patients who drank water with baking soda for two weeks, immune cells called macrophages, shifted from primarily those that promote inflammation, called M1, to those that reduce it, called M2. "The shift from inflammatory to an anti-inflammatory profile is happening everywhere," O'Connor says. "We saw it in the kidneys, we saw it in the spleen, now we see it in the peripheral blood."
    O'Connor hopes drinking baking soda can one day produce similar results for people with autoimmune disease. "You are not really turning anything off or on, you are just pushing it toward one side by giving an anti-inflammatory stimulus," he says, in this case, away from harmful inflammation. "It's potentially a really safe way to treat inflammatory disease."
    The research was funded by the National Institutes of Health.
    Read more at: Sciencedaily.com