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I am new to this forum but have been dealing with suspicious symptoms for over a year now. 

I had a positive sputum anti- gliadin antibody in 2007.  My doctor told me to stop eating gluten, even though I was not aware of any symptoms. I'd always had an irritable bowel but made no connection. I  but did take his advice though  

Fast forward, February 21st 2016. I ate a sandwich. It was my birthday and my co-workers got me lunch. Never having had a problem, I thought it would be benign. 

February 22nd in the afternoon I Developed a small itchy rash on my lower back, right side. I have never had rashes so this was odd but I ignored it. 

In the following weeks, the rash spread to my entire back and looked almost like clusters of abscesses ( reddish purplish spots) and reddened, flakey areas. Looked like two different types of rashes but no blisters. 

On May 30th, my hubby and I were out to dinner for our anniversary. I took one bite of his breaded fish. 

The following day, I had a red rash on my neck. 

From that point, the rashes continued to grow and spread. They appeared on my face, neck, inner arms, wrists and thumbs. All the rashes alternate between very itchy and painful/ burning. 

My employer finally told me that I had to be off work because we didn't know if it was contagious. That was September 22nd 2016. 

Since then I've had every test available except EGD and colonoscopy. I had a negative TTG but 2 of the 3 Genetic tests were positive for celiac. I've seen about 12 doctors of varying specialty and I've had allergy testing via patch, blood and antigen prick. I have many environmental and food allergies but the dr says they are mild to moderate - Not severe enough to avoid the foods  I get allergy shots for the mold, yeast, dust mites and environmental allergies  

I have a positive ANA - speckled type, elevated sed rate, positive rheumatoid factor and positive smooth muscle f-actin ( a liver test). I have a couple of nodules on my lung, bilateral angiomyolipomas on my kidneys and gallstones. 

Everything else is negative. 

My question is, can my eating gluten cause a non DH rash due to a bacterial, fungal or viral infection when one has celiac?  I'm assuming I do have celiac based on my symptoms and genetic testing.  The GI Doctor wants to do an EGD but the dermatologist is convinced that my rash is the symptom of a low grade systemic infection, based on its appearance and the fact that I don't feel well. The EGD may be too invasive with an unknown systemic infection, so they have decided to wait. My blood tests don't show elevated WBCs and blood cultures are negative. No one can tell me what the infection may be but I've been on doxycycline for over a month now. About 5 weeks ago, I developed multiple abscesses on my forearm. The dermatologist cultured one and it turns out to be MRSA. I was already on the antibiotic for a supposed systemic infection. I've had 7 skin biopsies and all showed atopic dermatitis or eczema. My father had eczema as a child but I've never had it until after eating the 2 slices of bread  

I have been on and off prednisone and doxycycline since September 2016. This rash isn't getting any better and I'm worried that the infection may be resistant to the doxycycline. I don't know if I should agree to an EGD until the rash is gone but at this point, it isn't going anywhere. The infectious disease dr has no clue what it is and wants to put me on methyltrexate. 

Im confused and terrified and from reading this forum, it appears I will need to consume gluten prior to the EGD. I am scared to death of doing that. Also, all of my celiac screening blood tests ( except the genetic DQ) were done while being off gluten for at lest 4-8 months. 

I just want to,know what this rash is from. It's so disabling and I don't want to be off work any longer or I risk loosing my job. 

Thank you all for this great forum. 

Sincerely

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Also, I had some gluten-free flour made with garbanzo beans, fava beans and tapioca. During the night my rashes got very inflammed, red and itchy. Today I've had 5 very loose stools and I don't feel well. 

Has anyone with celiacs had problems with any of those ingredients? 

Thanks 

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Hi Patty S,

Welcome to the forum! :)

Have you been tested for DH (dermatitis herpetiformis)?  DH is the skin rash associated with celiac disease.

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Just now, Patty s said:

Thank you for the welcome. I did have 7 skin biopsies and they told me none of them were DH. Is there any other testing method? 

Yes, the blood antibodies (celiac panel) and the endoscopy are other tests.  The biopsy for DH has to be taken from skin next to a lesion, not on the lesion.  That seems odd but it is true.

If you are on steroids to control your immune reactions then none of the testing is going to work.

There is a sub-forum section on DH that might have more information for you.

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Wow! That's very interesting!  I did have the ttg and genetic tests. The TTG was negative but thinking back,  I was on prednisone. Is there any other blood tests you can recommend?  Im eventually planning an EGD but with a mystery infection it's too risky, as they plan to do 6 or 7 biopsies, which could spread any potential infection into my blood stream. 

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8 hours ago, Patty s said:

Also, I had some gluten-free flour made with garbanzo beans, fava beans and tapioca. During the night my rashes got very inflammed, red and itchy. Today I've had 5 very loose stools and I don't feel well. 

Has anyone with celiacs had problems with any of those ingredients? 

Thanks 

Was that certified gluten free?  

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Wow!  So many issues.  I am sorry that you are struggling!  

I do not have DH.  I am one of the odd celiacs who continues to test negative to the TTG even on follow-up tests (DGP IgA positive, moderate to severe intestinal damage via endoscopy).  

A gluten challenge sounds awful.  Not sure I could attempt it if I had DH.  I know that you consider yourself gluten free, but maybe you are not.  Trace levels of contamination are possible and your tolerance for gluten might be a lot less than the average celiac.  For example, anything under 20 ppm is considered gluten for for most celiacs.  You might need to be closer to zero!  How to do this?  Eat just a very simple Whole Foods diet.  No processed food (like that gluten-free flour you had).  Try this diet for six months and see if you get results.  Here is the study (review the table showing the diet).  

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3598839/

Read the DH section for other foods that may trigger the rash and tips for getting some relief from the itching.   

Do you need a diagnosis?  My hubby does not have one.  He has been gluten-free for 15 years (12 years longer than me and I have a formal diagnosis).   He has maintained the diet because he knows gluten makes him sick.  He refuses to do a challenge, because he knows that he will become too sick to work and we frankly, like to eat and pay our bills.  So, it is possible to move forward without a diagnosis.  

I wish you well.  

 

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