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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:

Your symptoms are REAL!! You are NOT alone!! :) No one on here will tell you anything "weird" going on in your body is "all in your head". I have --I am not kidding--a list of symptoms covering 3 pages in a notebook. They developed gradually and I just kept going to doctors, specialists, etc. No one had an answer for me. I am crippled with chronic pain, insomnia...blah blah blah. ah, sorry....my story is too long to bore you with, but I will say THIS: I suffered multiple miscarriages and I never knew why until NOW. That kind of loss can trigger an autoimmune response, such as EBV and/or celiac. My sympathies on your loss, hon.

I do not know how I have kept my sanity all these years pre-diagnosis, because it has been very, very bad. I KNEW I wasn't making this s--t up (ya can't) but it got to the point where I was wondering if I would die before anyone figured it out. I FIGURED IT OUT!! (yah, me!!) :D If it were not for my awesome, sweet husband, I might have just jumped off a bridge. :unsure:

The itching --even if it never develops into DH--is still painful. My skin feels like I have a sunburn 24/7. Even my clothing feels abrasive.It sux. :o

We all make the mistake of ingesting gluten at first. :blink: It's okay...you'll get better at it!!

JUST a thought!! To avoid accidental glutenings, you may just want to eat one type of pasta.Get the Tinkyada pasta. Cook it 13 minutes. No more, no less. My cousin told me this when it kept turning out too mushy or too hard. It works. And it tastes like wheat pasta. :) Honest!

If you have not given up dairy yet, it may help with the fatigue and yes, by all means, make sure you are getting the right vitamins and minerals. Hope you feel better soon!

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I just read this information at http://gluten-intolerance-symptoms.com/dermatitis-herpetiformis/

Dermatitis Herpetiformis Treatment

Dermatits herpetiformis is a chronic condition with symptoms that may persist for some time. Thankfully, there are some treatments that can significantly lessen the symptoms of this condition. Although it is not clear how gluten intolerance is related to this condition, it is clear that a strict gluten-free diet has a positive effect on reducing the severity of DH outbreaks. A gluten intolerance test may help you determine if this is the trigger for your uncomfortable rashes.

Most patients will need to make a permanent switch to a gluten-free diet in order to avoid severe DC outbreaks (see my Gluten Free Pantry to get started). The pharmaceutical drug dapsone also has a very high success rate at significantly easing the itchy sensation and blisters associated with DH. It is not entirely clear why dapsone is so effective on treating this condition, as it is simply an antibiotic, and DH is not caused by bacteria. Nevertheless, most patients are able to live comfortably dermatitis herpetiformis so long as they cut gluten from their diet and administer dapsone as instructed.

Dermatitis herpetiformis symptoms remain among the most tangible and evident celiac disease symptoms associated with this nebulous and difficult autoimmune disease.

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I was an itcher too, some itches with rash, some without, sometimes hives. I managed to track them all down to other foods - soy, nightshades (most specifically potatoes), citrus (when I overdid it and became intolerant to it). Now the only thing that itches is my psoriasis and now I am back on Humira that is about gone too :) Of course along the way I took a lot of supplements too, but they alone did not get rid of the itching.

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I just read this information at http://gluten-intolerance-symptoms.com/dermatitis-herpetiformis/

Dermatitis Herpetiformis Treatment

Dermatits herpetiformis is a chronic condition with symptoms that may persist for some time. Thankfully, there are some treatments that can significantly lessen the symptoms of this condition. Although it is not clear how gluten intolerance is related to this condition, it is clear that a strict gluten-free diet has a positive effect on reducing the severity of DH outbreaks. A gluten intolerance test may help you determine if this is the trigger for your uncomfortable rashes.

Most patients will need to make a permanent switch to a gluten-free diet in order to avoid severe DC outbreaks (see my Gluten Free Pantry to get started). The pharmaceutical drug dapsone also has a very high success rate at significantly easing the itchy sensation and blisters associated with DH. It is not entirely clear why dapsone is so effective on treating this condition, as it is simply an antibiotic, and DH is not caused by bacteria. Nevertheless, most patients are able to live comfortably dermatitis herpetiformis so long as they cut gluten from their diet and administer dapsone as instructed.

Dermatitis herpetiformis symptoms remain among the most tangible and evident celiac disease symptoms associated with this nebulous and difficult autoimmune disease.

Quite a few people I know have DH. Some have blisters from head to toe. Clears up after going gluten-free...The sores I get on my scalp are tiny, like pimples only "harder"..and "wet". Not DH, which is more like oozing sores.

ALSO...Not everyone with celiac gets DH; however, all

people with DH ARE celiacs. So, itching without blisters is not necessarily DH....got that? I know, sounds clear as mud ... :D LOL LOL

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I don't have the blisters but was always told I had foliculitis. I have had the itching without the rash for about 20 years. Now if have a rash all over that I've had almost a year. AND I noticed a few months ago that I am getting psoriasis.

I just want it all to go away and be "normal" again.

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I don't have the blisters but was always told I had foliculitis. I have had the itching without the rash for about 20 years. Now if have a rash all over that I've had almost a year. AND I noticed a few months ago that I am getting psoriasis.

I just want it all to go away and be "normal" again.

No blisters on me either, just insane itching and burning skin (like a bad sunburn all the time)...horrid sensation. Sorry about the psoriasis. I know some others on here have that as well. It may clear up as well!

I know exactly what you mean about wanting to be normal, hon...me, too. And the sooner the better!I say that all the time to my husband (actually, I sort of scream it out loud at the walls..."I just want to be "NORMAL" again" :angry: ...) I also say I want to be "me" again. I miss her....she's in here somewhere!! (although I am hardly recognizable given the 90 lb. weight loss, lost muscle mass, and hair loss, etc...) :unsure:

Hang in there! We both have hope now!!

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No blisters on me either, just insane itching and burning skin (like a bad sunburn all the time)...horrid sensation. Sorry about the psoriasis. I know some others on here have that as well. It may clear up as well!

I know exactly what you mean about wanting to be normal, hon...me, too. And the sooner the better!I say that all the time to my husband (actually, I sort of scream it out loud at the walls..."I just want to be "NORMAL" again" :angry: ...) I also say I want to be "me" again. I miss her....she's in here somewhere!! (although I am hardly recognizable given the 90 lb. weight loss, lost muscle mass, and hair loss, etc...) :unsure:

Hang in there! We both have hope now!!

You sound just like me. In fact my husband and I are in therapy 'cause I'm not who he married. I don't know who I am. I did the opposite. I was healthy, happy and "the life of the party". Now, I gained 100lbs, I feel horrible and it's hard to move. I've lost all my strength, muscle. With EBV I am unable to exercise like I should.

Talk about hair loss. I used to have enough for 3 people. the envy of many hairdressers. I now only have enough for one. I know that sounds selfish but I would be bald if I didn't start out with LOTS.

I just want to be healthy.

thanks for listening

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You sound just like me. In fact my husband and I are in therapy 'cause I'm not who he married. I don't know who I am. I did the opposite. I was healthy, happy and "the life of the party". Now, I gained 100lbs, I feel horrible and it's hard to move. I've lost all my strength, muscle. With EBV I am unable to exercise like I should.

Talk about hair loss. I used to have enough for 3 people. the envy of many hairdressers. I now only have enough for one. I know that sounds selfish but I would be bald if I didn't start out with LOTS.

I just want to be healthy.

thanks for listening

I am your "life of the party " twin here!

In 1996, I was a healthy 140. I zoomed up to 215 lbs, no reason in particular except I had remarried after a rotten marriage and I was HAPPY and cooking up a storm and traveled when not working and I was enjoying life. I was still lively and active enough. Had aches and pains I attributed to my weight gain. Had "IBS" (so they said) and had to stop teaching.

Tried every diet under the sun. No help.Then, in 2004, after 3 surgeries, I started a gradual decline into muscle/joint pain. A whole slew of symptoms....too many to list here.

When this thing triggered for real in 2008, I lost 90 lbs., in a short time. I could keep nothing in and I suffered horrid stomach burning and pain. My whole body burned. I Got my wish--to be thin. Ha. I look skeletal, have no muscle, sparse hair, sunken cheeks, insomnia, even though I am exhausted, and the itching, burning. I was pretty and looked young for my age. Lively and energetic and fun..... Now, I just look old. I live in agonizing pain. I have worked with many PTs, etc...no help because the muscles are so compromised.

Everyone on here tells me it will resolve.

I believe them.

You have to give this new life some time.

I have read that the EBV can be treated and eliminated. I hope your doctor is helping you. Mine have been useless. Cruel, even.

I know the sadness and anger that comes from having your life "stolen".

I never give up hope that I will get well.NEVER!

I see some positive changes already and pray for more.

Getting rid of gluten and having the gut heal and the body "rights" itself--those are key to the symptoms resolving.

Hang in there....I hope you feel better soon.

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party twin

you are an ispiration. I too have many symptoms. I was the thin one and got carded occasionally. I'm now the fat one and was carded not too long ago but for a senior citizen discount. :o

I also atributed my aches and coordination to my rapid weight gain. about 100 pounds in 6 years. Spent tons on money on different doctors, medication, therapists, accupunction, massages, etc.

My new doctor tells me I have probably had gluten problems since my early 20 but possible since birth. All that damage done. I'm hoping I can at least get to where I feel better and look better. Weight gain, bad skin, rash, massive hair loss. I don't mind hurting I just don't want to look like I hurt.

I don't think I've fully excepted it yet. So difficult to eat when you have two picky boys and a picky husband. I don't really like to cook so to have to make two meals now is torture.

I've always been about easy going, not a lot of fuss. Not a lot of pampering. but now I have to put all this energy into thinking and planning.

AHHHHHHHH

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party twin

you are an ispiration. I too have many symptoms. I was the thin one and got carded occasionally. I'm now the fat one and was carded not too long ago but for a senior citizen discount. :o

I also atributed my aches and coordination to my rapid weight gain. about 100 pounds in 6 years. Spent tons on money on different doctors, medication, therapists, accupunction, massages, etc.

My new doctor tells me I have probably had gluten problems since my early 20 but possible since birth. All that damage done. I'm hoping I can at least get to where I feel better and look better. Weight gain, bad skin, rash, massive hair loss. I don't mind hurting I just don't want to look like I hurt.

I don't think I've fully excepted it yet. So difficult to eat when you have two picky boys and a picky husband. I don't really like to cook so to have to make two meals now is torture.

I've always been about easy going, not a lot of fuss. Not a lot of pampering. but now I have to put all this energy into thinking and planning.

AHHHHHHHH

Me too, kiddo, me too!!. I have had a zillion problems for most of my life. Never put it together until now. I am sure my Dad had it, but he died a few years ago and it's too late for me to save him. Frankly, that is right around the time I really went over the edge and started the MAJOR league symptoms that have crippled me.

I am lucky my husband has been awesome! never gives up. Drives me everywhere because I had the space cadet head many of us develop and I really thought I was going insane. I felt anxious and wired for sound. I couldn't read or articulate very well and I couldn't cook because it was "too difficult" to watch more than one pot on the stove. It was that bad. I KNEW something was keeping me ill. I told my sister I thought someone was poisoning me. Close! Gluten is a poison to us.

Obviously, I am a LOT better since I went gluten-free. But I still have a lOOOOOONG way to go.

I have one suggestion (besides hang in there, it gets easier!) YOUR WHOLE FAMILY NEEDS TO GO gluten-free, too. If you have celiac, your kids may develop it too. Sorry, but it's the truth. It is hereditary. And it will make your life easier to have everyone eating the same thing.

Just a suggestion.... but I bet you all the Moms on here will tell you the same thing.

Just take one day at a time. You have been very ill and now, you need to heal. Be good to yourself. ;)

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I don't think I've fully excepted it yet. So difficult to eat when you have two picky boys and a picky husband. I don't really like to cook so to have to make two meals now is torture.

I've always been about easy going, not a lot of fuss. Not a lot of pampering. but now I have to put all this energy into thinking and planning.

AHHHHHHHH

I know it takes some planning. That said, there's no way in hell that I'd cook two meals. There are just too many naturally gluten-free meals to cook to have to go that direction. I used to tell my kids that I wasn't running a restaurant...if they were hungry they could eat or go without. If you need some suggestions for meals, you might want to check the recipe section. Not everything has to be difficult. Or post your questions if you're looking for simple recipes for certain things.

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party twin

you are an ispiration. I too have many symptoms. I was the thin one and got carded occasionally. I'm now the fat one and was carded not too long ago but for a senior citizen discount. :o

I also atributed my aches and coordination to my rapid weight gain. about 100 pounds in 6 years. Spent tons on money on different doctors, medication, therapists, accupunction, massages, etc.

My new doctor tells me I have probably had gluten problems since my early 20 but possible since birth. All that damage done. I'm hoping I can at least get to where I feel better and look better. Weight gain, bad skin, rash, massive hair loss. I don't mind hurting I just don't want to look like I hurt.

I don't think I've fully excepted it yet. So difficult to eat when you have two picky boys and a picky husband. I don't really like to cook so to have to make two meals now is torture.

I've always been about easy going, not a lot of fuss. Not a lot of pampering. but now I have to put all this energy into thinking and planning.

AHHHHHHHH

Weight gain(check!) bad skin (check!), rash (check!), massive hair loss (check!)...Thank god for makeup and a wide variety of scarves and ribbons I could wear in my hair. My students think I'm pretty and trendy because of it instead of insane! :P But after 3 months I was stopped in the office the other day by my old boss. He wanted to know if I had been exercising more or if I'm using different cosmetics because I apparently look better than I have in years.

As for the picky eating, I think this is a case where love has to triump over pickiness. Maybe have a meeting with your husband and boys and let them know just how sick you are and that you need their help. Let them know that if you don't change your diet you can die. It's not exagerating. It's the truth. Maybe have them help with making the meals and reading lables so they see just how complex it is.

It was an adjustment for my family too but that's basically what I did with my husband. When he married me I was already vegitarian, then I couldn't have msg or artifical sweeteners. Now gluten too! But I got him involved in the kitchen with me and he reads lables like a pro now. I know I can send him to the grocery store no problem and if he wants to have something gluten free, he'll often make it for himself AND make me a gluten free meal. This gluten free stuff is a lot of work and sometimes overwhelming. No better people to ask for help from then our families!

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Weight gain(check!) bad skin (check!), rash (check!), massive hair loss (check!)...Thank god for makeup and a wide variety of scarves and ribbons I could wear in my hair. My students think I'm pretty and trendy because of it instead of insane! :P But after 3 months I was stopped in the office the other day by my old boss. He wanted to know if I had been exercising more or if I'm using different cosmetics because I apparently look better than I have in years.

As for the picky eating, I think this is a case where love has to triump over pickiness. Maybe have a meeting with your husband and boys and let them know just how sick you are and that you need their help. Let them know that if you don't change your diet you can die. It's not exagerating. It's the truth. Maybe have them help with making the meals and reading lables so they see just how complex it is.

It was an adjustment for my family too but that's basically what I did with my husband. When he married me I was already vegitarian, then I couldn't have msg or artifical sweeteners. Now gluten too! But I got him involved in the kitchen with me and he reads lables like a pro now. I know I can send him to the grocery store no problem and if he wants to have something gluten free, he'll often make it for himself AND make me a gluten free meal. This gluten free stuff is a lot of work and sometimes overwhelming. No better people to ask for help from then our families!

FC!

Hearing you are feeling well and looking better is very encouraging to the rest of us! :) Thank you!

NMTHOMMY--

It's too hard to do this alone, hon.

The whole family needs to be completely aware of celiac disease and what devastating effects non-compliance will bring.

You have been there for your family and now, your family needs to support you.

My husband is beyond supportive. As I slowly deteriorated right before his eyes for 3 years, he took me to countless doctor visits. He held me while I cried and reassured me when chronic pain and anxiety set in. Massive weight loss and on an on. He picked me up off the bathroom floor many times. Dressed me. He listened patiently when I told him all the research I did on celiac disease--took me 3 years to convince anyone it was what I had. He made the doctor listen. None of this was easy, given that I was so foggy headed I could barely concentrate or retain information. I held onto his arm all the time because I was so "lost". As I now face months of healing and grueling rehabilitative physical therapy, I have him to encourage me. I know how blessed I am.

He makes our gluten-free bread, grocery shops and knows how to read labels. He went gluten-free voluntarily WITH me. Because of the loss of muscle mass and strength, the brain fog and slow reflexes I experienced, he drives me everywhere. I simply could not have done this without his loving support. I often think that without him, I may have given up. Or gone insane.

I pray every day to get back to the energetic, vivacious woman he married. Every day I thank him for his patience and devotion and every day I fight to regain my health. He says I am the courageous one for fighting for answers instead of giving in to the pain and the meds all the doctors wanted to dope me up with; but HE is the courageous one for sticking with me when things got really bad. He tells me every day: "We got this now, Babe. We're almost there"...I fight hard to get well, not only for me, but for him.

Gluten-free living isn't as difficult as being sick and in pain day after day after day. gluten-free living is a CURE! :)

Hope things improve for you soon!! We can do this!!

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