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

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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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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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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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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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    • I agree, it's very unlikely she doesn't have celiac disease.  Can you find a local celiac group to get a doctor recommendation from?  They might have the best idea of a local doctor who is familiar with celiac disease.  There is also a doctors sub-section of this forum which might help find one.  http://www.celiac.com/gluten-free/forum/6-celiac-disease-doctors/
    • Hi I'm newly diagnosed with coeliacs only 5 days ago so I have had 4 days gluten free , I felt more energised pretty quick but today have gone back to that sluggish feeling lethargic, could this be a withdrawal effect also did anyone have swelling whilst on gluten ?
    • Thank you! I will call and ask for a full panel and see where it leads!!
    • I think the idea of grinding your own at home stems from the thought that flavored coffees might be ground on the same machines.  The grinders in the grocery are not cleaned between uses.  However, I have not found a flavored coffee bean that had gluten, so it's probably not a real concern.  For coffee that comes from a factory ground, I wouldn't worry at all.   Machines would be cleaned between flavors and nothing but coffee could be made on the machines or even in the same building ( everything made would taste/ smell like coffee). if you still have doubts - I went to the International Celiac Disease Symposium a few years back.  This is held every few years in different countries for medical professionals that study and treat Celiac.  They present research, etc.  All food served was gluten-free.  We drank a lot of plain, already ground, coffee!  A lot!   Coffee is not on any lists as a gluten containing food.  Talking legitimate organizations - not some blogger or pseudo- science website.   After all this, if you still doubt that coffee is gluten free...... Then don't drink it!  It leaves more for me!    
    • To answer some of your questions.... Non celiac gluten sensitivity does not cause any damage to the small intestine so that is not the source of the "little holes or bumps".  You need to get her records including the report of the endoscopy to see exactly what it says as well as the pathology report of the biopsies. You should always get medical records anyway & keep a copy for yourself. How many biopsies did he take? There should be a minimum of 4, ideally 6. The small intestine is very vast even in a small child. An adults is the size of a tennis court! That's a whole lot of territory so biopsies can miss damage especially when enough of them are not taken! She has 2 positives on the serum panel. This crap about "weak" positives should be thrown out of the nomenclature! A positive is a positive, weak or not! Her DgP IGG is way over the range and extremely telling. As far as my knowledge goes, there is nothing else that causes a positive DgP IGG other than celiac disease. False positives are really rare and to have 2 false positives would be astronomically rare! You are right & smart that she really does need an official diagnosis! IMHO, keep her on gluten for right now. Get a second opinion pronto & I believe you'll be able to get her a dx based on the 4 out of 5 rule if nothing else. I wouldn't think it's going to take more than a month to get to see another doc for a second opinion. Then you can take her off gluten. Kids heal up really fast, way faster than us old geezers! I'm sure as others  wake up & get on their computers they will be along to voice their knowledge. I am in the eastern time zone & rise before the birds so I was on here early. Hang in there mom! You're doing the right thing!
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