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Possible celiac disease? Arthritis and rash....

emt852

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emt852 Newbie
emt852
Posted

Hi everyone. I have not been diagnosed with celiac disease yet, and I have some questions. I am a previously healthy 29 year old female. In July of 2015 I became seriously ill with an unknown virus and was hospitalized.  After that I developed severe inflammatory arthritis that was first through to be post viral syndrome. However it persisted and was diagnosed as HLA-B27+ inflammatory arthritis. I have tried several medications and am now taking Enbrel and methotrexate, however my symptoms were never completely resolved. 

 
At the suggestion of an allergist, I started a gluten free diet, and within a week my symptoms were almost completely resolved. I have had a rash this entire time that was diagnosed as acne (but was obviously not) and persisted despite many medications. This too went away when I cut out gluten! 
 
Last Thursday I slipped up and ate gluten.  Within 12 hours my face, chest, back, neck, scalp, upper arms, and buttocks were covered in the rash but more severe then ever. It has been 4 days and I have been very careful not to eat gluten and it is once again starting to go away. I saw the dermatologist today and she said that it could be dermatitis herpetiformis and did a biopsy. She requested that my rheumatologist follow up with Celiac testing. However these are my questions:
 
Will I test positive if I've been eating gluten free? If not, how long do I need to eat gluten before going for the blood work?
 
Also, I know that I had one test for celiac disease back in 2015 and it was negative. Is it possible that it is now positive?
 
Sorry for the long post. Just wondering if anyone else has gone through something similar. I'm starting to wonder if I do have celiac disease and the arthritis is actually related to that. In that case I am taking these terrible medications unnecessarily. 
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Ladybug karin Rookie
Ladybug karin
Posted

I won't be much help in answering your questions..but I'm going through exactly the same thing ...you could have been writing about me as it's so similar....diagnosed with inflammatory arthritis and prescribed hydroxychoroquine....I've had the most unbelievable itchy blistering rash for two years ..I have had a coeliac test done recently and it was negative ..I read on this forum that you do need to be eating gluten containing foods for 6 weeks before blood test and biopsy..I am now waiting for appointment with dermatologist..hopefully to have a biopsy..because also from advice on here ..you can have negative blood test but have positive biopsy ...if I do have this wrong I'm sure someone will be along to correct me , ..I too have been worried I'm taking medication that I don't need 

GFinDC Veteran
GFinDC
Posted

Hi EMT and welcome to the forum! :)

I think your dermatologist is right, it sounds like you have (DH) dermatitis herpetiformis.  Ladybug Karin was close, the actual gluten challenge for blood antibody testing is 12 weeks, and 2 weeks for the endoscopy.

But, and this is a big butt (ha ha), people with DH often fail the blood work and gut biopsy testing, even though they have celiac disease.  For DH testing, the preferred test is a skin biopsy from clear skin next to a lesion.  If you are on steroids though, the biopsy will likely be inaccurate.

There is a section of the forum for DH that has lots of info in it.

Open Original Shared Link

How much gluten should be consumed prior to being screened for celiac disease?

It’s best to continue a normal, gluten-containing diet before being screened and diagnosed. If a gluten-free diet has been followed for more than a few weeks, then we recommend eating at least 1 serving of gluten (1/2 slice of bread or a cracker, for example) every day for 12 weeks prior to a blood test and 2 weeks prior to a biopsy. This is often referred to as a “gluten challenge” and should be done under the care of a medical professional. December, 2012
 
More reading from the UofC celiac center:
 
Open Original Shared Link
 
GFinDC Veteran
GFinDC
Posted

Also, nightshades are known to cause joint pain in some people.  So not eating any nightshades (tomatoes, potatoes, peppers, eggplant) for a month or 2 might help.

squirmingitch Veteran
squirmingitch
Posted

BUT and this is another big butt (ha-ha) EVEN for the dh biopsy you have to have been eating gluten for 12 weeks.

ALL celiac testing requires you to have been eating gluten if you had gone gluten free prior to testing.

squirmingitch Veteran
squirmingitch
Posted

BTW, I had so much pain throughout my entire body that I was positive I would be in a wheelchair for life within 6 months time. I had a full spine (that's all 3 sections) MRI. Turns out there wasn't anything that should be causing me all that trouble. I would get frozen shoulders, frozen hips, knees, hands, feet, you name it. NOTHING helped the pain -- didn't even touch it & that includes opioid painkillers. I would just ice myself till I was numb which is not a good thing for you to do but it was the only way the pain would stop.

knitty kitty Grand Master
knitty kitty
Posted

Hello.  After reading this thread, I wondered if an allergy or hypersensitivity reaction to sulfa drugs might be a possible explanation for the itchy rash and arthritis pain.  It sounded so similar to my symptoms when I was on sulfa medications.  I did a little research and came across this website that explains so much. I hope it's helpful.

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