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Itching


Jill0711

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Jill0711 Rookie

Did any of you develop itching after going gluten free? I have been gluten-free for a month. I've had itching since the end of the first week. The itching is everywhere, but no rash. It varies in intensity from being an annoyance to the point where I take benadryl just to sleep. The only other time I had itching was when my thyroid was extremely overreactive. No signs of that being the case. I also had my thyroid nukes so I doubt it is related to that. Any thoughts? It is driving me crazy.

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rain Contributor

yes, and I'm still dealing with the itchiness 10 months later. :( Hopefully that won't be your story.

I did find that eliminating some irritants besides gluten (soy, dairy, nuts, chocolate) and reducing salt and sugar has helped.

I have also found that if I take a quick hot shower at night and put apple cider vinegar on my skin, I can almost sleep thru the night.

I also have desonate ointment and that seems to help although I rarely use it because I don't want side effects.

If you search the forum you'll find alot of other information. The dermatologist I saw said I didn't have DH. My skin is itchy and burns but there are no itchy.

I saw Dr. Fassano and he said until the gut is healed there isn't really anything to do for the itchiness except wait.

It's discouraging though.I hope you feel better soon.

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IrishHeart Veteran

Yes, I have itching. And my skin is hot pink sometimes and burning all the time.

I had the itching, etc. for 3 years before going gluten-free and I still have it 2 months later. My scalp is so sore and peeling. Not DH, just tiny bumps here and there that are more like hard, wet pimples. I also lost a good amount of hair.

My thyroid levels are fine, so it's not that.

I am hoping all this will resolve as the gut heals. My doctor has no clue and a dermatologist last year was of no help. Time will tell, I guess.

I hope you get relief soon!!

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Jill0711 Rookie

Thanks! It is nice to know that I am not alone :D Mine isn't DH, but I have the tiny bumps that itch.

Rain- sorry that you are still dealing with this 10 months later. I can't even imagine.

Sometimes I wonder if it is a problem with my lotions and shampoos. I must admit that I haven't even looked at them beyond chapstick because the food alone was so overwhelming. I think that going through my shampoo and stuff will be the next step. Maybe my body is just reacting topically to gluten even though I'm not ingesting it. Who knows, but I'm willing to try it to see if it helps. Other than that I guess I will just have to keep the Benadryl handy :lol:

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Mari Explorer

I had itching rough skin and bumps on my scalp before going gluten-free. Most of that cleared up as I began to heal and adsorb more vitamins, nutrients and minerals from food and supplements. A few years on the gluten-free diet I ate some wheat crackers by mistake and the itchy skin and scalp bumps were the last symptom to arise (several weeks) and the last symptom to go away - about 5 months later. I have noticed lately that I have the bumps and some itchy skin and think it is probably from the Enriched Rice Dream I've been using for Vit B12 as it is known to contain a small level of gluten. I don't use any shampoos or body products, instead use a saturated solution of Borax in a squirt bottle and rinse with 1/4 teaspoon of citic acid in water for hair and also use it for washing my skin. . This keeps my hair looking healthy.

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IrishHeart Veteran

The borax/citric acid idea is worth investigating! Thanks!

Once I knew gluten was my problem, I started serious label reading of all the products in my house. I found hydrolyzed wheat protein in my shampoo and my hair spray. I wondered why I would feel as I were suffocating every morning for a few hours!! :unsure: Once I eliminated those --and replaced everything with gluten-free soaps and shampoos--I stopped feeling as I were having a histamine response 24/7. (I cannot take benadryl because it makes me "hyper". I know, most people get sleepy. I am just lucky, I guess :rolleyes: ) I am also what I call an "agitated" celiac --I WISH I could sleep and nap. Whenever anyone on here talks about sleeping for 10 hours, I am astonished. I'm lucky if I get 4 or 5 hours.

I dumped the Rice Dream 2 months ago.I think it was adding to my problem because otherwise, I was eating 100% gluten-free.

My scalp is getting better and the itching is less, but I will be so happy when all the weird and painful symptoms subside. We have to be diligent and patient, which is difficult after being so ill and in pain for so long, isn't it? Hope everyone's itching stops soon!! :)

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kate1 Newbie

Did any of you develop itching after going gluten free? I have been gluten-free for a month. I've had itching since the end of the first week. The itching is everywhere, but no rash. It varies in intensity from being an annoyance to the point where I take benadryl just to sleep. The only other time I had itching was when my thyroid was extremely overreactive. No signs of that being the case. I also had my thyroid nukes so I doubt it is related to that. Any thoughts? It is driving me crazy.

You will need to give it time.

I developed the itching and it went on for 2 to 3 months but I have always had a problem too because of my thyroid or I believe it to be that.

When I went |Gluten free last November I itched like mad everywhere, I suspected dairy as one reason.

Its calmed down quite a lot now but some topical things like face cream or cleanser can set me off and after the face has been itching the whole body seems to start.

Two of the garnier milk cleansers had that effect on me.

Then I recently bought a face cream slapped it on and went to bed!!!

Up all night, the face itched first ,I cleaned it off with wipes etc but was awake all night as it set off the whole of my body.

To be honest I am not too sure about this gluten through the skin thing but think

things that contain wheat ingredients means you have a topical wheat allergy too and an all round allergy to wheat as well as gluten.

The face cream I read later had....Triticum Vulgare (wheat) germ extract.

Dont know what is in the garnier cleanser that bothers me but I itch the minute it is on.

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Jill0711 Rookie

It's the patience that is the hard part :rolleyes: I had to take Benadryl again last night because the itching is ridiculous. I'm not sure if the Benadryl helps because it stops the itching or because it knocks me out :D

It is weird to develop an allergy when I've never had any, but I've heard that can happen after diagnosis because the body is on hyperalert. I haven't cut out dairy yet either. I know I need to because I'm still having some gas, but I haven't been able to make myself give it up :ph34r: I know that I need to get over it, but it eliminates so many foods. Ok, I'll stop whining and just suck it up. It is so hard to know if something is related to celiac or something separate since celiac is so systemic. I've got a lot to learn. Thanks for the advice, you are all very helpful.

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healinginprogress Enthusiast

I am also what I call an "agitated" celiac --I WISH I could sleep and nap. Whenever anyone on here talks about sleeping for 10 hours, I am astonished. I'm lucky if I get 4 or 5 hours.

I'm the same, I always say I suck at napping, because I just can't do it. And I've had insomnia for pretty much as long as I remember. I'm just over two weeks gluten-free, and today I started itching :( I feel as if everything I touch is poison or something! I am really hoping the itching, insomnia, bloating....oh I could go on and on...will go away in time!

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healinginprogress Enthusiast

It's the patience that is the hard part :rolleyes: I had to take Benadryl again last night because the itching is ridiculous. I'm not sure if the Benadryl helps because it stops the itching or because it knocks me out :D

It is weird to develop an allergy when I've never had any, but I've heard that can happen after diagnosis because the body is on hyperalert. I haven't cut out dairy yet either. I know I need to because I'm still having some gas, but I haven't been able to make myself give it up :ph34r: I know that I need to get over it, but it eliminates so many foods. Ok, I'll stop whining and just suck it up. It is so hard to know if something is related to celiac or something separate since celiac is so systemic. I've got a lot to learn. Thanks for the advice, you are all very helpful.

I'm with you on the dairy thing...but after days of feeling TERRIBLE, I think it's time to REALLY bare bones my diet...and then slowly add stuff back in. It's just so hard, because I love making fancy, healthy meals, but I guess I might just have to go bland for a while until things start healing up. And whine away...you've earned it, LOL!!! My fiance is sick of hearing it, we should at least have SOMEWHERE we can come and whine...because it sucks :P

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fattycat Rookie

I also had itching. It was mostly on my palms and the bottoms of my feet and I felt like ripping them right off. Sometimes though it was my whole body. It ended up that my B6 levels were low and apparently causing it. When I started taking B vitamin suppliments the itching went away :D

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fattycat Rookie

I'm the same, I always say I suck at napping, because I just can't do it. And I've had insomnia for pretty much as long as I remember. I'm just over two weeks gluten-free, and today I started itching :( I feel as if everything I touch is poison or something! I am really hoping the itching, insomnia, bloating....oh I could go on and on...will go away in time!

I also had problems sleeping. Since I was a child I always got up 5-10 times a night and everyone thought that that was just "how you are". In university I was sent to a couple of sleep clinics because I was kind of blacking out during the day (it was my blood sugar levels) and they diagnosed me with 3 different sleep disorders!

After a month or two of being gluten free I found that when I went to bed, I didnt lay awake for hours anymore. I only got up once or twice during the night and if I did get up I could fall back asleep. No more racing brain. It was all I could do to keep myself from crying with joy. When it comes it is well worth the wait!

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IrishHeart Veteran

It's the patience that is the hard part :rolleyes: I had to take Benadryl again last night because the itching is ridiculous. I'm not sure if the Benadryl helps because it stops the itching or because it knocks me out :D

It is weird to develop an allergy when I've never had any, but I've heard that can happen after diagnosis because the body is on hyperalert. I haven't cut out dairy yet either. I know I need to because I'm still having some gas, but I haven't been able to make myself give it up :ph34r: I know that I need to get over it, but it eliminates so many foods. Ok, I'll stop whining and just suck it up. It is so hard to know if something is related to celiac or something separate since celiac is so systemic. I've got a lot to learn. Thanks for the advice, you are all very helpful.

Jill, hon,,,You are NOT whining! You are expressing the frustration you feel...WE ALL FEEL IT...and this is the place to do it!! :) I've been "sucking it up" for so long, I've turned inside out :D

The itching is just 1 of about 100 (I am not kidding) symptoms I have had going on for over 3 years ..about 1/2 of them (insomnia, "IBS" -HA!, muscle/joint pain, bad periods/miscarriages...blah blah blah...)for most of my life...and if I were not starting to feel better after 2 months gluten-free, I really, really would be in a certified insane asylum by now. :huh:

Things are looking up! I pray that I'll be able to regain all the muscle mass I lost. I am weak and in awful pain. I am in the weeds still, but I never give up!!

I developed the itching and red skin and "histamine" response when the celiac "triggered" for good in Feb. 2008. Food and substances that never bothered me "assaulted" me...I had trouble breathing, swallowing, and my mouth and tongue burn. (The allergist says there is no allergen doing that to me--ya, okay, sure) It's ridiculous what happens to the body when the gut is ripped up. I stopped listening to doctors a few months ago, and by following a strict gluten-free, soy-free, dairy-free diet, I feel better than I have in YEARS. Just being able to concentrate again and sleep more than 3-4 hours is AMAZING!!

I would suggest to you that you give up dairy initially (my doc said 6 months) to help speed up healing. I know, bummer!! The small intestine can't deal with the lactose either. It doesn't mean you can't put it back in later---my cousin eats it all the time now that she's healed-- but if you are gassy or still having issues, it is likely the dairy. I don't like giving it up one bit myself. Cheese, ice cream and bread --my favorite foods (of COURSE they are :angry: !! ARRGH!! LOL MAJOR bummer!!

VENTING is good for you! I found more solace, advice and "hand-holding" on this site than I received from anyone during this ordeal pre-or post- diagnosis. (except hubby--he's been awesome!!)

Patience is the hardest part. But here's how I look at it....I am 2 months into feeling better and healing and getting my life back, rather than another 2 months LOST in chronic, debilitating pain, spacey- headed and living in the bathroom...right? Right!!

Hang tough!! ;)

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IrishHeart Veteran

I also had problems sleeping. Since I was a child I always got up 5-10 times a night and everyone thought that that was just "how you are". In university I was sent to a couple of sleep clinics because I was kind of blacking out during the day (it was my blood sugar levels) and they diagnosed me with 3 different sleep disorders!

After a month or two of being gluten free I found that when I went to bed, I didnt lay awake for hours anymore. I only got up once or twice during the night and if I did get up I could fall back asleep. No more racing brain. It was all I could do to keep myself from crying with joy. When it comes it is well worth the wait!

FC! THIS IS GREAT NEWS!! So happy you are sleeping better!!

I have always been a "frequent awakener" too. Since I was a babe. I had a sleep study done too--they said I slept in "portions" . :unsure: I do--and I have vivid, colorful, all-senses engaged nutsy dreams. (I was chatting with someone about this on another post. Quite common amongst gluten-filled heads apparently :D ) And I will be so pleased to have more restorative sleep. That racing brain is a bugger, isn't it??

Mine is calming down...slowly, but surely...yippee!

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IrishHeart Veteran

I'm the same, I always say I suck at napping, because I just can't do it. And I've had insomnia for pretty much as long as I remember. I'm just over two weeks gluten-free, and today I started itching :( I feel as if everything I touch is poison or something! I am really hoping the itching, insomnia, bloating....oh I could go on and on...will go away in time!

I felt like that to!---like, what else is going to make me feel itchy, sunburned, spacey- headed..."revved up"...and I went from enjoying a nap once and awhile to being unable to do it all --for over 3 years--even though I could barely keep my eyes open--what's up with THAT??!! :angry:

How can we have insomnia when we are so darn tired?? Doesn't make sense, does it? A lot of this celiac business makes no sense. A body in chaos, I guess.

I feel your frustration because I live it too. But I found that whether I like it or not--giving up the dairy stopped the bloating. Most of us need to give it up for the first few months. Some can put it back in. Some cannot. The blunted villi cannot deal with the lactose either.

I found that digestive enzymes helped me A LOT. I had HORRIBLE burning stomach, heartburn, bloating --I would cry every day---and now, I do not! :) (2 months gluten-free/DF/SF) Just a thought.

Hope you feel better soon!

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Jill0711 Rookie

Thanks for all of the advice and sharing my misery B) It is nice to know that I am not the only one dealing with all of this. Starting Monday (because I have to grocery shop tomorrow first :rolleyes: ), I am commited to a minimum of 2 weeks on a whole foods diet. Part of my energy issue is that I am craving sweets because my body is still malabsorbing fats. I think all the sugar I have consumed is tanking my energy levels. I have also purchased a new gluten-free shampoo, conditioner, body wash, face cream, and makeup. This better work :unsure: I figure I can either spend the money on new products or buy stock in benadryl :D A whole foods diet can only help with the healing so I am going to try. I will probably be back here whining by tuesday from sugar withdrawal :ph34r:

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txplowgirl Enthusiast

It wasn't until I took out gluten, soy, dairy and all topical creams, shampoos and conditioners that had wheat AND switched from regular salt to sea salt that the itchiness and bumps went away for me especially the sores and bumps on my scalp which I had had for over 20 years.

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rain Contributor

It's the patience that is the hard part :rolleyes: I had to take Benadryl again last night because the itching is ridiculous. I'm not sure if the Benadryl helps because it stops the itching or because it knocks me out :D

It is weird to develop an allergy when I've never had any, but I've heard that can happen after diagnosis because the body is on hyperalert. I haven't cut out dairy yet either. I know I need to because I'm still having some gas, but I haven't been able to make myself give it up :ph34r: I know that I need to get over it, but it eliminates so many foods. Ok, I'll stop whining and just suck it up. It is so hard to know if something is related to celiac or something separate since celiac is so systemic. I've got a lot to learn. Thanks for the advice, you are all very helpful.

I hear you -- the only way I was able to make the dietary changes was with the support of my acupuncture doc. I'm fortunate that my insurance covers some of it because I was seriously losing my mind. So if this forum is working post often!

I'll add that the results of the dietary change have also been awe inspiring. This last week I've been gaining back muscle strength. I can't believe it. It's not that I'm superwoman or anything ;-) but I feel like it compared to my body just a month ago.

Thanks for this thread, this itchiness is really tough.

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fattycat Rookie

FC! THIS IS GREAT NEWS!! So happy you are sleeping better!!

I have always been a "frequent awakener" too. Since I was a babe. I had a sleep study done too--they said I slept in "portions" . :unsure: I do--and I have vivid, colorful, all-senses engaged nutsy dreams. (I was chatting with someone about this on another post. Quite common amongst gluten-filled heads apparently :D ) And I will be so pleased to have more restorative sleep. That racing brain is a bugger, isn't it??

Mine is calming down...slowly, but surely...yippee!

lol that is something I do miss! I don't dream as much as I used to...or at least I dont remember them the way I did before.

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IrishHeart Veteran

It wasn't until I took out gluten, soy, dairy and all topical creams, shampoos and conditioners that had wheat AND switched from regular salt to sea salt that the itchiness and bumps went away for me especially the sores and bumps on my scalp which I had had for over 20 years.

Thanks for telling us this great news!!---everytime I hear someone has healed, I tell myself, stay the course, it's coming to you, too!! :)

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IrishHeart Veteran

Thanks for all of the advice and sharing my misery B) It is nice to know that I am not the only one dealing with all of this. Starting Monday (because I have to grocery shop tomorrow first :rolleyes: ), I am commited to a minimum of 2 weeks on a whole foods diet. Part of my energy issue is that I am craving sweets because my body is still malabsorbing fats. I think all the sugar I have consumed is tanking my energy levels. I have also purchased a new gluten-free shampoo, conditioner, body wash, face cream, and makeup. This better work :unsure: I figure I can either spend the money on new products or buy stock in benadryl :D A whole foods diet can only help with the healing so I am going to try. I will probably be back here whining by tuesday from sugar withdrawal :ph34r:

Jill,

I crave sugary foods, too!! Man, I could eat a whole chocolate cake right now!! :rolleyes::P It's only 8:45 in the morning!! :lol:

Sticking to a whole foods diet--that means NOT ONE SINGLE PRE-PACKAGED ITEM ALLOWED!!-- is difficult at first. And inconvenient. :angry: But it is the best way to go.

I eat a lot of fruit to satisfy the sugary desire. I use stevia in my green tea (takes the "edge off :lol: )

I have snuck potato chips and then wonder why my mouth burns from the salt. (I have cravings for salt, too!)

If you need to vent, whine, scream...get on here and do it! I'll be around to listen. ;) No one gets it like another in the same itchy boat.....hang in there!

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IrishHeart Veteran

I hear you -- the only way I was able to make the dietary changes was with the support of my acupuncture doc. I'm fortunate that my insurance covers some of it because I was seriously losing my mind. So if this forum is working post often!

I'll add that the results of the dietary change have also been awe inspiring. This last week I've been gaining back muscle strength. I can't believe it. It's not that I'm superwoman or anything ;-) but I feel like it compared to my body just a month ago.

Thanks for this thread, this itchiness is really tough.

RAIN!

gaining back muscle strength is Fantastic news!! Again, thanks for sharing because it gives me great hope and encouragement!! My body is so weak and I just "droop" from lost weight and muscle mass. I am so happy for you!!

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nmthommy Rookie

It is SO nice to not be alone anymore. No one could understand my pain. I'm sure I sounded like a hypochondriac. I kept getting new symptoms. I have had itching for over 20 years. Sometimes so bad that I would want to pull my skin off. I had one doctor tell me that I must be a "cutter". NO IT ITCHES! :angry: I have scars all over my body. I had acrylic nails put on so I don't tear but now bruise. I guess that's better. When I was pregnant I would cry every night and my husband would drown me in lotion and wrap me up to sleep. It didn't help but it was something. My doctor at that time told me that "it is common to itch when you are pregnant". I guess I should have stood up for myself. I even had to take my husband with me to one doctor that thought it was normal to be tired after a miscarriage. Yes, but I was exhausted. She listened to my husband and I was diagnoised with Epstein-Barr (chronic Mono)

I am in one week of gluten-free and I pray this will solve many of my problems. I already messed up though. Making pasta for my husband I tasted it to see if it was done. OOOPS forgot.. :unsure:

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rain Contributor

RAIN!

gaining back muscle strength is Fantastic news!! Again, thanks for sharing because it gives me great hope and encouragement!! My body is so weak and I just "droop" from lost weight and muscle mass. I am so happy for you!!

Thanks :) Your message gives me heart too!! It's so easy to say ok down with one symptom on to the next (there are so many, not to mention all the symptoms that pass in stages) and easy to miss the progress being made...

There's something about itching that is more maddening than the other symptoms.

What a relief to be talking about this!

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rain Contributor

Thanks for all of the advice and sharing my misery B) It is nice to know that I am not the only one dealing with all of this. Starting Monday (because I have to grocery shop tomorrow first :rolleyes: ), I am commited to a minimum of 2 weeks on a whole foods diet. Part of my energy issue is that I am craving sweets because my body is still malabsorbing fats. I think all the sugar I have consumed is tanking my energy levels. I have also purchased a new gluten-free shampoo, conditioner, body wash, face cream, and makeup. This better work :unsure: I figure I can either spend the money on new products or buy stock in benadryl :D A whole foods diet can only help with the healing so I am going to try. I will probably be back here whining by tuesday from sugar withdrawal :ph34r:

I also found that increasing my intake of vitamins helped with sugar. I'm not sure what combination is best but there was a direct correlation for me. Also, I was told to take a liquid vitamin because they digest easier.

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    • knitty kitty
      @Shireen32,  Take some deep breaths.  Your labs are fine!  Your tTg IgA is so low!  Well done!  Your endomysial IgA is fine.  There's not a level on the endomysial test.  It's just "yes or no" for if you have celiac disease.   No, it's too early to call it refractory. What are you eating?  Please tell us more than meat and veg. Do you consume dairy? Do you consume processed gluten free foods?   Are you taking any prescription medications, herbal supplements, vitamins and minerals?  
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