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Laura90

DH? Please help!

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Hello everybody, and thanks in advance for your help!!

I have been having all the celiac symptoms, but 10 years ago my doctor asked for a blood test, and as it came out "indefinite" (not positive, not negative) she told me I wasn't celiac. For 10 years I have been having a big variety of symptoms (severe lack of vitamin D and Iron, extreme bloating, pain, diharrea, liquen schlerosus, etc) until lately I went back to a different doctor. She asked for a genetic test, and it came back DQ2.2 positive. Now she told me to eat as much gluten as I can for a month, and then she will perform a biopsy. 

The thing is, since I have started eating a lot of gluten (I eat bread every day) I got some strange looking pimples, that itch a lot, and end up bleeding. I had no idea it could be related to the celiac disease until I stared reading this forum. Please find a picture attached, and if someone was so kind to tell me if it looks like dermatitis herpetiformis I would be super grateful, as I am very confused. I have one pimple like this on my stomach, another one on my leg and another one on my arm. In summer I always get dyshidrotic dermatitis on my fingers, but this one looks different. 

Please excuse my English as it is not my first language. Thank you for your help in advance. 

IMG_6007.jpg

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1 hour ago, Laura90 said:

Hello everybody, and thanks in advance for your help!!

I have been having all the celiac symptoms, but 10 years ago my doctor asked for a blood test, and as it came out "indefinite" (not positive, not negative) she told me I wasn't celiac. For 10 years I have been having a big variety of symptoms (severe lack of vitamin D and Iron, extreme bloating, pain, diharrea, liquen schlerosus, etc) until lately I went back to a different doctor. She asked for a genetic test, and it came back DQ2.2 positive. Now she told me to eat as much gluten as I can for a month, and then she will perform a biopsy. 

The thing is, since I have started eating a lot of gluten (I eat bread every day) I got some strange looking pimples, that itch a lot, and end up bleeding. I had no idea it could be related to the celiac disease until I stared reading this forum. Please find a picture attached, and if someone was so kind to tell me if it looks like dermatitis herpetiformis I would be super grateful, as I am very confused. I have one pimple like this on my stomach, another one on my leg and another one on my arm. In summer I always get dyshidrotic dermatitis on my fingers, but this one looks different. 

Please excuse my English as it is not my first language. Thank you for your help in advance. 

IMG_6007.jpg

After eating macarroni I got red rash around the pimple

F892AC4C-CE88-4B69-8981-935102354E12.jpg

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Celiac disease, an autoimmune (AI) disorder, can cause a variety of rashes.  The most common and directly-related to celiac disease is Dermatitis Herpetiformis.  DH is celiac disease as it is triggered by gluten.  The only way to know for sure is to get a skin biopsy by a dermatologist who knows how to biopsy in the correct area.  

https://celiac.org/about-celiac-disease/related-conditions/dermatitis-herpetiformis/

You mentioned that you have LS which is usually identified by white patches.  Once you have one autoimmune disorder you can go on to develop more.  There are now close to 100 autoimmune disorders identified.  

The celiac gene test is normally used to help eliminate a celiac disease diagnosis because about 30% of the population has the celiac genes but only a few actually go on to develop celiac disease.  You are fortunate that your doctor gave you the gene test since your antibodies tests were inconclusive.  It is what has encouraged her to order the biopsies.  

As far as this new rash?  Who knows?  Obviously your body seems to be responding to gluten.  Make sure a wheat allergy is ruled out.  Make sure other AI issues like Crohn’s Disease are ruled out.  Symptoms for AI issues often overlap.  

Keep eating gluten daily and let us know your results! Your English is perfect!  

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6 hours ago, cyclinglady said:

Celiac disease, an autoimmune (AI) disorder, can cause a variety of rashes.  The most common and directly-related to celiac disease is Dermatitis Herpetiformis.  DH is celiac disease as it is triggered by gluten.  The only way to know for sure is to get a skin biopsy by a dermatologist who knows how to biopsy in the correct area.  

https://celiac.org/about-celiac-disease/related-conditions/dermatitis-herpetiformis/

You mentioned that you have LS which is usually identified by white patches.  Once you have one autoimmune disorder you can go on to develop more.  There are now close to 100 autoimmune disorders identified.  

The celiac gene test is normally used to help eliminate a celiac disease diagnosis because about 30% of the population has the celiac genes but only a few actually go on to develop celiac disease.  You are fortunate that your doctor gave you the gene test since your antibodies tests were inconclusive.  It is what has encouraged her to order the biopsies.  

As far as this new rash?  Who knows?  Obviously your body seems to be responding to gluten.  Make sure a wheat allergy is ruled out.  Make sure other AI issues like Crohn’s Disease are ruled out.  Symptoms for AI issues often overlap.  

 Keep eating gluten daily and let us know your results! Your English is perfect!  

Hi Cyclinglady! Thank you SO much for your answer, you are very kind!

So you think it could be DH? I finally called my doctor because the rash was getting bigger and more itchy, and she told me to stop eating gluten, and that she will see me some time next week, and tell me how to proceed, because the biopsy is scheduled for April.

Regarding other allergies, I have a lot of them. If they were tickets to a lottery I would sure have won haha. They started around the same time as my intestinal problems, and I was also diagnosed with asthma at that time. My Immunoglobulines A, G and E are super high. 

My doctor made me take a stool test, and I got negative result for candida, and something that would have indicated colitis. I also had a weak positive for giardia lamblia. 

Anyway, thank you so much for your answer, really, I am very new to the celiac world and I get easily stressed and desmotivated. 

 

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Hi Laura, You are in Spain? I think I read that on some other post you made.???? First off, you said you got the celiac blood tests 10 years ago & it was neither negative nor positive. That test is not good forever. Maybe you were negative then but that does not mean you would test negative for the remainder of your life. So you should be tested again now. There's a huge problem though Laura. You have to be eating gluten every day for 12 weeks -- that is for the celiac blood tests OR for the dh skin biopsy. 

I understand your doc told you to stop eating gluten & see her next week & an endoscopic biopsy is scheduled for April. Well, the good news is that for an endoscopic biopsy you only have to eat gluten every day for 2 weeks prior. I'm wondering if your doc is thinking of letting you be gluten free up until 2 weeks before the biopsy of the small intestine. 

One really can't tell if you have dh from pictures. A lot of skin issues/rashes look like dh. It could be anything. I will say that celiacs are prone to skin issues/rashes.

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Laura,

Here is some good research to be reading up on until your tests in April.

It should answer most of your questions.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4230654/

It is not medical advice but I hope it is helpful. Good luck on your continued journey.

Posterboy,

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Laura,

If you have been on a gluten diet for many months and your doctor just asked you to eat even more gluten, do not stop. I know you are itching.  Squirmingitch knows the DH rash all too well.  Heed her advice!  Read through the DH section of the forum.  When you see your doctor next week, ask for the celiac blood tests again.  You can develop celiac disease at anytime in your life!  Here are the tests and try to get all of them, if possible:

http://www.cureceliacdisease.org/screening/

After the blood test, you can go gluten free to give you some relief, but know that you must go back on gluten for two weeks prior to an endoscopy to obtain small intestinal biopsies.  

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15 hours ago, squirmingitch said:

First

 

15 hours ago, squirmingitch said:

Hi Laura, You are in Spain? I think I read that on some other post you made.???? First off, you said you got the celiac blood tests 10 years ago & it was neither negative nor positive. That test is not good forever. Maybe you were negative then but that does not mean you would test negative for the remainder of your life. So you should be tested again now. There's a huge problem though Laura. You have to be eating gluten every day for 12 weeks -- that is for the celiac blood tests OR for the dh skin biopsy. 

I understand your doc told you to stop eating gluten & see her next week & an endoscopic biopsy is scheduled for April. Well, the good news is that for an endoscopic biopsy you only have to eat gluten every day for 2 weeks prior. I'm wondering if your doc is thinking of letting you be gluten free up until 2 weeks before the biopsy of the small intestine. 

One really can't tell if you have dh from pictures. A lot of skin issues/rashes look like dh. It could be anything. I will say that celiacs are prone to skin issues/rashes.

Yes, I'm in sunny Barcelona! :) Let's see what she says... Yesterday I didn't eat any gluten for dinner, nor today for breakfast or lunch and the rash is getting better. But I also started swimming in a local club, maybe it's some allergy to the heavy chemicals they put in the water so it stays clean... anyway, I will keep you updated, thank you very much for answering! :) 

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15 hours ago, Posterboy said:

Laura,

Here is some good research to be reading up on until your tests in April.

It should answer most of your questions.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4230654/

It is not medical advice but I hope it is helpful. Good luck on your continued journey.

Posterboy,

Dear Posterboy,

Thank you for your answer. The link is really interesting! I tried to find information on my own but I just got the basic Wikipedia page, this article is very good, thank you so much!

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14 hours ago, cyclinglady said:

Laura,

If you have been on a gluten diet for many months and your doctor just asked you to eat even more gluten, do not stop. I know you are itching.  Squirmingitch knows the DH rash all too well.  Heed her advice!  Read through the DH section of the forum.  When you see your doctor next week, ask for the celiac blood tests again.  You can develop celiac disease at anytime in your life!  Here are the tests and try to get all of them, if possible:

http://www.cureceliacdisease.org/screening/

After the blood test, you can go gluten free to give you some relief, but know that you must go back on gluten for two weeks prior to an endoscopy to obtain small intestinal biopsies.  

Thank you so much for your answer! She told me to stop eating gluten inmediatly and talk to her next week... maybe she will give me some kind of cream for the rash and ask me to eat gluten again, not sure. In fact I couldn't speak to her, I talked to her through her secretary, so not sure what will she want to me to do. She did some blood tests together with the genetic test, and the blood test (anti gliandina and something more) came back negative, like very negative. So she said that the bipopsy will help us to see if its celiac or not. I will keep you updated, thank you so much for all your answers.

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Hi everybody! I took a wheat allergy test and it was negative, and I stopped eating gluten, but I was feeling more and more tired, I couldn't even go to work.

I went to a generalist doctor and he asked for a specific blood test, and it turns out I got mononucleosis, a virical infection, so this rash has to do with the virical infection.

Many thanks to everybody that has answered. 

Aida.

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2 hours ago, Laura90 said:

Hi everybody! I took a wheat allergy test and it was negative, and I stopped eating gluten, but I was feeling more and more tired, I couldn't even go to work.

I went to a generalist doctor and he asked for a specific blood test, and it turns out I got mononucleosis, a virical infection, so this rash has to do with the virical infection.

Many thanks to everybody that has answered. 

Aida.

Laura90,

That is good to hear ...if your energy levels don't pick up soon try some Magnesium Glycinate.  Magnesium is important for our bodies to  make energy.  Taking Magnesium first as Magnesium Citrate then Magnesium Glycinate really helped my fatigue issues!

Here is some links that might help you  ..... EBV was recently linked to Celiac disease. .. and other disease(s) as well.

It is good your doctor knew to check for it!

https://www.beyondceliac.org/research-news/View-Research-News/1394/postid--107060/

http://simmaronresearch.com/2015/08/epstein-barr-virus-the-magnesium-connection/

https://www.doctoroz.com/article/secret-life-epstein-barr-virus

Have your doctor keep an eye on Vitamin D levels too.  I just found out my Vitamin D levels were low again .. .they (it Vitamin D levels) can be hard to keep up if you don't spend some time in the sunshine everyday.

Here is research that explains how low Vitamin D levels can effect daytime drowsiness entitled "Resolution of hypersomnia following identification and treatment of vitamin D deficiency."

https://www.ncbi.nlm.nih.gov/pubmed/21206551

I actually come across it (this research) recently researching my new found low Vitamin D levels and since I have started back on Vitamin D supplements I have noticed better blood sugar control too for my T2DM.

I hope this is helpful but it is not medical advice.

2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included.

Posterboy by the Grace of God,

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    Thanks Posterboy, that was interesting information.  I believe that I had read something elsewhere about tetracycline, at least, being used instead of, or along with, Dapsone for severe or refractory cases of DH. Unfortunately, even if I had medical insurance (which I do not), and had a regular doctor who was even willing to recognize and accept my condition for what it is, I don't know what kind of luck I would have in persuading that hypothetical doctor to give me a particular and non-sta
    Healthysquirrel,  Please have your doctor check your Vitamin D level!   Vitamin D deficiency is related to vertigo https://www.ncbi.nlm.nih.gov/pubmed/27386060 Vitamin D can help with high IgE https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5263170/ Low vitamin D and low ferritin are tied https://www.ncbi.nlm.nih.gov/pubmed/29385099 Dry eye problems including blepharitis can be helped with vitamin d and vitamin a https://www.ncbi.nlm.nih.gov/pmc/articles
He's still going to have to eat gluten even for an endoscopic biopsy. 2 weeks minimum. Plus guidelines say no dx on an endoscopic biopsy alone - you have to have the positive blood to go with it. Even that 2 weeks will deposit more antibodies under his skin if he's got dh.  Let me put it this way. The gut damage is the gut damage & if he's celiac & it sounds like he is but we don't have labs to prove it, then there is a treatment for it. Only 1 treatment for it. A very strict gluten
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