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Itching - Driving Me Crazy - Not Sure What To Do!


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#1 Lori Chisel

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Posted 14 February 2008 - 07:35 PM

I am new to this websight and have been reading and trying to understand. I started itching in November and was put on Prednizone twice before I could get into a dermatologist. He told me I had exzema and sent me home with a few creams to use when I itched. I asked about food allergies and was told that it wasn't that and that the cream would help. It did help for a short time after I put it on but the itch was soon back, worse after I ate my evening meal and through the evening. I have a rash, and spots on my elbows, knees, buttocks, calves and thighs, back and now stomach and shoulders and armpits - ok just about everywhere. I put lotion on as soon as the itch begins and I have been able to stay away from the large sores but the itch is unbearable at times. The sores have never gotten watery and burst so I don't know if I actually have DH or not. I have tried to go gluten free but everytime I turn around I have eaten something with gluten, not knowing it. I am so frustrated, not knowing for sure what is wrong with me, where do I start? Can a blood test tell me if I have DH?
I would appreciate any advice at all. Thanks in advance!!
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#2 yolo

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Posted 14 February 2008 - 08:10 PM

I am new to this websight and have been reading and trying to understand. I started itching in November and was put on Prednizone twice before I could get into a dermatologist. He told me I had exzema and sent me home with a few creams to use when I itched. I asked about food allergies and was told that it wasn't that and that the cream would help. It did help for a short time after I put it on but the itch was soon back, worse after I ate my evening meal and through the evening. I have a rash, and spots on my elbows, knees, buttocks, calves and thighs, back and now stomach and shoulders and armpits - ok just about everywhere. I put lotion on as soon as the itch begins and I have been able to stay away from the large sores but the itch is unbearable at times. The sores have never gotten watery and burst so I don't know if I actually have DH or not. I have tried to go gluten free but everytime I turn around I have eaten something with gluten, not knowing it. I am so frustrated, not knowing for sure what is wrong with me, where do I start? Can a blood test tell me if I have DH?
I would appreciate any advice at all. Thanks in advance!!



I understand they can actually test the watery parts under the sores for DH plus its fairly inexpensive. So by all means have the test!!

And also by all means avoid all gluten after you get the test. I had DH all over like you but no one told me anything. I changed my diet for other reasons and started taking detox herbs which made th problem go away. Avoidance of sugar and anthing artificial also helps. And greens, greens, greens!

If you have DH its likely you have celiac underneath. So read on here on these boards. If you want more herbal advice look at some of my other posts.

Good luck!

Yolo
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Diagnosed celiac sprue as infant: failure to thrive & pneumonia-back on grains age 4. Began herbs 1971 combating chronic kidney disease/general ill health 1973. Avoid wheat family and "allergens" by 1980. Late 80's doc. diagnosed candida: cave-man diet. Diagnosed degraded myelin sheath 2006; need co-enzyme B vitamins. Discovered celiac fall 2007; finally told diagnosis as infant. Recently found I am salicylic acid intolerant. Ironically can't tolerate most herbs now. Can now eat brown rice & other gluten-free grains (except corn) & even maple syrup & now homeopathic medicine works! Am still exploring the shape of this elephant but I've made progress!

#3 yolo

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Posted 14 February 2008 - 08:13 PM

I understand they can actually test the watery parts under the sores for DH plus its fairly inexpensive. So by all means have the test!!

And also by all means avoid all gluten after you get the test. I had DH all over like you but no one told me anything. I changed my diet for other reasons and started taking detox herbs which made th problem go away. Avoidance of sugar and anthing artificial also helps. And greens, greens, greens!

If you have DH its likely you have celiac underneath. So read on here on these boards. If you want more herbal advice look at some of my other posts.

Good luck!

Yolo



PS--it takes a while to get rid of all gluten but you will get the hang of it. Just persistance and patience! Theres lots of advice on avoiding hidden glutens here on the boards.
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Diagnosed celiac sprue as infant: failure to thrive & pneumonia-back on grains age 4. Began herbs 1971 combating chronic kidney disease/general ill health 1973. Avoid wheat family and "allergens" by 1980. Late 80's doc. diagnosed candida: cave-man diet. Diagnosed degraded myelin sheath 2006; need co-enzyme B vitamins. Discovered celiac fall 2007; finally told diagnosis as infant. Recently found I am salicylic acid intolerant. Ironically can't tolerate most herbs now. Can now eat brown rice & other gluten-free grains (except corn) & even maple syrup & now homeopathic medicine works! Am still exploring the shape of this elephant but I've made progress!

#4 wowzer

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Posted 14 February 2008 - 08:38 PM

Dear Lori, I was where you are at 2 years ago. I know it seems that nothing stops the itching. I did take Benedryl and sometimes it at least helped to sleep. Don't give up, it takes some time to get the gluten out of your system. It will get easier. I went gluten free the beginning of 2007 and in about 3 weeks I finally stopped itching. I did find I was even more sensitive to gluten. Make sure that you check your medication, cosmetics, lotions, body wash, shampoo, conditioner. Hang in there. It will get better. Wendy
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#5 ravenwoodglass

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Posted 15 February 2008 - 04:08 AM

Go back to your derma and ask for a biopsy. The biopsy need to be done to the tissue NEXT to an active lesion, this is where they will find the deposits. If they biopsy an active lesion it will be a false negative. Be aware that if the derma finds you do have DH what they will most likely do is give you a script for Dapsone. This will help to heal the lesions but you will still need to go on the diet to resolve the condition. It can take up to 2 years for the deposits to be absorbed into your system and until that occurs even small amounts of gluten will reactivate the lesions.
I personally have never found anything that helps the itch. Others may have things that have worked for them that might be worth your trying but the ony way to totally resolve it will be to be very strict with the diet and your personal care items.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#6 Lori Chisel

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Posted 15 February 2008 - 06:10 PM

PS--it takes a while to get rid of all gluten but you will get the hang of it. Just persistance and patience! Theres lots of advice on avoiding hidden glutens here on the boards.



I was told that I have to start eating gluten again in order for the test to be accurate. Is this true?
I have made another appointment with the doctor for Tuesday the 19th and I don't want to start over detoxing if I don't have to. Thanks!!!!
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#7 ravenwoodglass

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Posted 16 February 2008 - 04:17 AM

I was told that I have to start eating gluten again in order for the test to be accurate. Is this true?
I have made another appointment with the doctor for Tuesday the 19th and I don't want to start over detoxing if I don't have to. Thanks!!!!


In order for the blood tests for celiac to be done, yes you would need to be actively eating a full gltuen diet, and they may still be a false negative. For the biopsy of your skin lesions you do not have to be actively eating gluten but you do need to have active lesions.
Another route that you could consider if you are already gluten free is Enterolab. They do fecal antibody testing and if you have only been gluten-free for a short time they will still be able to pick up the antibodies. Although if you have had a good response from the diet and things are resolving that is indicitive enough, your body would not have started to heal gluten free if it wasn't an issue. When it all comes down the slope it is your body that really knows the answer, if it has a chance to tell you.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#8 Liz&Scott

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Posted 16 February 2008 - 05:59 AM

Totally sounds like Celiac. The only way they can actually determine if you are suffering from Celiac is a blood test. Go back to that doctor a ask for one. We found a great dermatologist who does specialized in Celiac. There are still doctors out there who are actually not yet educated in Celiac Disease. When my husband started with the itchy elbows and buttocks, he went to two doctors who didn't even suggest testing him. They gave him some cream and sent him home. Again, you must do a blood test.
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#9 ravenwoodglass

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Posted 16 February 2008 - 12:52 PM

Totally sounds like Celiac. The only way they can actually determine if you are suffering from Celiac is a blood test. Go back to that doctor a ask for one. We found a great dermatologist who does specialized in Celiac. There are still doctors out there who are actually not yet educated in Celiac Disease. When my husband started with the itchy elbows and buttocks, he went to two doctors who didn't even suggest testing him. They gave him some cream and sent him home. Again, you must do a blood test.


Hi and welcome. If I had relied on blood tests I would now be dead as up to 30% of us do show negative. Because I never showed positive in blood tests an endo was never even thought of.
The blood test is the first test usually done to check for celiac. Unfortunately there is a high number of false negatives, although the newer Ttg test is a bit better than the old form of blood testing. Doctors consider the best test to be the endoscopic biopsy, another test that does have a high rate of false negative especially with children.
There are also folks who have DH and don't yet have GI involvement. These folks often will not show up in blood testing or biopsy because there may not be enough damage to the intestine yet. They need to be as strict as a diagnosed celiac to prevent more autoimmune related problems.
Many have found the truest and most for sure test for celiac to be a good strict trial of the diet.
  • 0
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#10 ccrrgn

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Posted 17 February 2008 - 05:02 PM

I am new to this websight and have been reading and trying to understand. I started itching in November and was put on Prednizone twice before I could get into a dermatologist. He told me I had exzema and sent me home with a few creams to use when I itched. I asked about food allergies and was told that it wasn't that and that the cream would help. It did help for a short time after I put it on but the itch was soon back, worse after I ate my evening meal and through the evening. I have a rash, and spots on my elbows, knees, buttocks, calves and thighs, back and now stomach and shoulders and armpits - ok just about everywhere. I put lotion on as soon as the itch begins and I have been able to stay away from the large sores but the itch is unbearable at times. The sores have never gotten watery and burst so I don't know if I actually have DH or not. I have tried to go gluten free but everytime I turn around I have eaten something with gluten, not knowing it. I am so frustrated, not knowing for sure what is wrong with me, where do I start? Can a blood test tell me if I have DH?
I would appreciate any advice at all. Thanks in advance!!



Hi
I think if you have any kind of rash it might help for you to check the I.F. factor of the food you eat. I have C.H. and have started a list of foods that I eat and tried to lower the [ Inflemation factor] of my diet and I am getting some relief. As all my rashes are not caused by C H and although I did have alergy tests done they would not do foods There is a book that tells the I F factor of most of the foods and the foods are rated + or - and the idea is to stay away from the bad stuff.Like grape fruit causes inflemation flax seed reduces it ect.
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#11 darlindeb25

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Posted 17 February 2008 - 05:37 PM

When I think back, my sister and I both had terrible bouts with itching. We didn't really have any open sores that could be considered DH though. Our itching was pretty much contained on our legs. It happened generally after bathing, and we could always expect it to be extremely irratating in the evening. I'm sure it was connected to celiac disease in some way, or vitamin deficiencies, which in any shape or form, is connected to celiac. We do both know that soft water did greatly help both of us. The area we lived in has evtremely hard water and the itching was much worse without soft water. I remember the terrible itching, but, I'm sorry, I can't remember if it was before or after going gluten free, I hoenstly thing it was both. I am not sure my sister has had soft water for 8 yrs now and she will be gluten-free 8 years in March. I can't speak for her, but I do not have the itching any longer. I only recall temporary fixes, like laying a cool, damp towel over my legs, things like that.
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Deb
Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

#12 greendog

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Posted 18 February 2008 - 01:04 PM

I am new to this websight and have been reading and trying to understand. I started itching in November and was put on Prednizone twice before I could get into a dermatologist. He told me I had exzema and sent me home with a few creams to use when I itched. I asked about food allergies and was told that it wasn't that and that the cream would help. It did help for a short time after I put it on but the itch was soon back, worse after I ate my evening meal and through the evening. I have a rash, and spots on my elbows, knees, buttocks, calves and thighs, back and now stomach and shoulders and armpits - ok just about everywhere. I put lotion on as soon as the itch begins and I have been able to stay away from the large sores but the itch is unbearable at times. The sores have never gotten watery and burst so I don't know if I actually have DH or not. I have tried to go gluten free but everytime I turn around I have eaten something with gluten, not knowing it. I am so frustrated, not knowing for sure what is wrong with me, where do I start? Can a blood test tell me if I have DH?
I would appreciate any advice at all. Thanks in advance!!

Your dermatologist needs to open his mind a little and look at other possibilites. I'm not a celiac but can't tolerate gluten. If I eat gluten in certain forms like vinegar it will make me itch, and it is usually in the lower legs. Certain kinds of wine will do the same thing. Worse in the winter time because the winter weather is already beating up your skin. A hot bath will make it worse because of what it does to the histimines. I have used a combination of cortaid and tea tree oil which seems to help, and as a last resort I use dye free benedryl. I read in a doctors column that equal parts of listerine, baby oil and water mixed together and sprayed on the irritated areas might help out.
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#13 ccrrgn

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Posted 19 February 2008 - 07:02 AM

I am new to this websight and have been reading and trying to understand. I started itching in November and was put on Prednizone twice before I could get into a dermatologist. He told me I had exzema and sent me home with a few creams to use when I itched. I asked about food allergies and was told that it wasn't that and that the cream would help. It did help for a short time after I put it on but the itch was soon back, worse after I ate my evening meal and through the evening. I have a rash, and spots on my elbows, knees, buttocks, calves and thighs, back and now stomach and shoulders and armpits - ok just about everywhere. I put lotion on as soon as the itch begins and I have been able to stay away from the large sores but the itch is unbearable at times. The sores have never gotten watery and burst so I don't know if I actually have DH or not. I have tried to go gluten free but everytime I turn around I have eaten something with gluten, not knowing it. I am so frustrated, not knowing for sure what is wrong with me, where do I start? Can a blood test tell me if I have DH?
I would appreciate any advice at all. Thanks in advance!!

Hi
I am plagued by the same itches, are yours different kinds of rashes, I was to the point of taking pain pills just to get a nights sleep once in a while. I also seen dermatologists allergists and reumatologists, and I was still itching. My friend suggested I stop eating gluten, this helped a bit, I lost one of the rashes, I got on the net and started to search different foods for thier inflamation factor, itche factor [ I F ] , and stopped eating the ones that are the biggest offender. Well I am almost itche free. It was a surprise to me to find flax seed to be such a help, I took oil for a long time, un aware that it took the whole seed to do the job, start with 1 tbsp freshly ground, no more than 3 tbsp a day. Omega 3 reduces I F Omega 6 increases I F. I also stop eating different food groups for 3-4 weeks at a time [citrus, nitshades, gluten ] and then reintroduce them 1 kind not group, at a time and have found some that my body is sensitive to and have eliminated them from my diet for the time being. I believe that by doing this and getting my skin and immune system back on track I will be able to eat some of these foods again in small amounts. I have found a N.P. that has been doing blood tests for me to rule out auto immune system dysfunction.
My best suggestion to you is to learn all you can about the foods you eat and try eliminating on your own. You will be working on a positive note while the Dr. do thier small part. Since you are worried about celiac try eliminating the gluten first, and yes I know what a chalenge this is as I started in Dec. 07, and I am having some success.
By the way blood tests will tell wether or not you are a celiac,or at least it will tell if you are allergic to gluten,[ when this allergy has damaged the bowel then you will be what the Dr. term a celiac and the damage is done], they are called titers, it is the same test to tell is your immune system is protecting you against deseases. I was a dog breeder for 40 yrs and titers where used all the time to check if the vaccines where working. the difference is you are checking to see if your immune system has built up antigenes and is attacking it self. This what I have been lead to believe.
The Dr. have many ways of calling these rashes ie D.H. =C.H.=R.H. = eczemma, psoriases, I think it is all the same a dysfunctional immune system.
Keep on keeping on and you will eventually find your answer
Norma
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