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Trying to get diagnosed

Ladybug karin

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Ladybug karin Rookie
Ladybug karin
Posted

Any advice will be appreciated..I'll try and keep this as short as possible..I have family history of coeliac disease ..father ,grand father ..cousins etc ..two years ago started with  the symptoms myself ..( although thinking that have had problems for years ) but this time I've come out with the most unbelievable itchy blistering rash which is driving me insane . spent the last 18 months by process of elimination found gluten containing foods was the culprit..went to gp explained family history..the fact rash started after an extremely stressful time ...her answer ..you don't look like you have an allergy.!!!! ...to which I quickly put her right about it being an auto immune disease..of which I already have one ..hashimotos....she agreed to do test thrusting the form in my hand saying " well when it comes back negative we can put that one to bed can't we " ..today I had the results ...negative ...now feel I can't go back and ask for further investigation...if I do what do I say ..

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ravenwoodglass Mentor
ravenwoodglass
Posted

Were you still eating gluten foods when you were tested? If you were not then the tests would be negative. Can you get an appointment with a celiac knowledgable dermatologist? Your rash may be DH, the skin form of celiac. Some folks with DH test negative on blood tests but a diagnosis of DH is a diagnosis of celiac and no further testing would be needed.

Ladybug karin Rookie
Ladybug karin
Posted
  • Author

Hi ..yes I looked on this site about blood tests and made sure I was eating gluten..another question though ..I have been having steroid injections in my back and to an injured thumb ..I'm also taking hydroxychoroquine for inflammatory arthritis ,blood tests for RH (blood test came back negative for that too) ..but was prescribed medication for my achy joints , sorry going off subject..was wondering if any of these medications could have an effect on blood tests ...I am going to go back to gp thank you for your advise and ask to be referred to a dermatologist..I need to get this skin prob sorted either way ...it's the most unbelievable itchy stingy burning feeling I've ever felt. Other symptoms I have are fatigue, pins and needles , headaches, wind , bloated tummy , but no weight loss ..I've actually gained weight but think that could be from the steroids ..sorry to go on , 

Ladybug karin Rookie
Ladybug karin
Posted
  • Author

Not sure if I have done this correctly..tried to show pic of rash 

14914916935111684351227.webp

cyclinglady Grand Master
cyclinglady
Posted

Read through our DH section.  I am pretty sure that steroids can impact test results not to mention that some DH suffers do not test positive on the celiac blood tests even on a gluten diet.  There is a very specific way to biopsy DH (to verify antibodies in the skin), so finding a celiac-savvy dermatologist is critical.  

Hope this helps! 

cyclinglady Grand Master
cyclinglady
Posted
25 minutes ago, Ladybug karin said:

Not sure if I have done this correctly..tried to show pic of rash 

14914916935111684351227.webp

Honestly, based on our forum DH posters threads, there is no way to visually identify your rash.  A skin biopsy obtained specifically to DH specifications is required.  My non-doctor opinion?  Your family history and your insanely itchy rash?  My money would be on celiac disease, if I were a betting gal!  

Ladybug karin Rookie
Ladybug karin
Posted
  • Author

Thank you for all  your replies ..I am going to push gp to refer me to dermatologist and will make sure they know about coeliacs ...to tell the truth I'm at my wits end ..and understand I can't be diagnosed by a pic ..was wondering if it looked like something others had , this morning when I received negative results ..I cried ..needed to ask someone who would understand..This is the first time I've ever gone on a forum ..and I must say a big thank you for reading and taking the time to reply 

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Jmg Mentor
Jmg
Posted

Hi and welcome :)

1 hour ago, Ladybug karin said:

..sorry to go on ,

Absolutely no apology neccesary!

21 minutes ago, Ladybug karin said:

this morning when I received negative results ..I cried .

I know exactly how you felt / feel. I tested negative but was convinced I had my answer. The test wasn't conducted well but such was my reaction to the gluten-free diet I was given an endoscopy. It was also negative, but the gastro told me to avoid gluten for life and boy did I agree with him. So whilst you should still seek answers and make sure you get all the follow ups available remember that you may have already found the reason and that when the diagnostic process is completed there's nothing to stop you going gluten free and establishing for yourself whether its the source of your symptoms. There are lots of good doctors and specialists out there, but there are also some awful and ignorant ones. Don't be afraid of speaking up for yourself and seeking a second opinion. Draw all the support you need from everyone here. We've almost all been through some crappy times whilst seeking answers and sometimes the answer isn't as definitive as you'd wish. Chin up! :)

There's a forum FAQ stickied above and awhile ago I collected some links and sample answers in this thread, maybe it will be of some use:

Best of luck!

ps, I got spots like that on my back and chest and going gluten and mostly dairy free cleared them up. I'd also bet that you've found your answer! 

Ladybug karin Rookie
Ladybug karin
Posted
  • Author

Well today I took your advice ..went back to gp and asked to be referred to a dermatologist.. it was a struggle she kept saying " but your blood test is negative you don't have coeliac" but after reading information on here I was able to explain ...she said oh you know more about it than I do , ...and agreed to send referral but can take up to 3 months for appointment..she told me to stop eating gluten !!!!..I told her  I will when all investigations are done no matter what the results 

squirmingitch Veteran
squirmingitch
Posted

Good for you! I hope it doesn't take 3 months though. any way you can speed that up? Call for cancellations???? Go to another derm???

You need to bring a print out of how the dh biopsy is done correctly. Not ON a lesion but on clear skin ADJACENT to an active lesion.

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Ladybug karin Rookie
Ladybug karin
Posted
  • Author

Thank you so much for that information yes I'll print it out and take it with me ...the problem here with the nhs...it's a waiting game ..and have to take what your given in regards to which consultant you see,  although yes good idea I will phone and ask about cancellations . I'm feeling lots more positive today than yesterday after all the helpful replies and information and quite proud of myself for being more assertive at the doctors today :D

Jmg Mentor
Jmg
Posted
58 minutes ago, Ladybug karin said:

good idea I will phone and ask about cancellations .

That's definitely your best option (from a fellow Brit) :)

If it's any consolation the dermatologist I eventually saw was the standout physician out of a not very impressive bunch in my diagnostic adventure. I almost required the crash cart when he asked me about my blood test results, he'd actually read my notes :o

 

Ladybug karin Rookie
Ladybug karin
Posted
  • Author

What ....actually read them :blink:

Jmg Mentor
Jmg
Posted
2 hours ago, Ladybug karin said:

What ....actually read them :blink:

I think the golf club must've been closed that day. After nurse administered the smelling salts I was able to continue.

squirmingitch Veteran
squirmingitch
Posted
2 hours ago, Jmg said:

I think the golf club must've been closed that day. After nurse administered the smelling salts I was able to continue.

:lol::lol::lol:

  • 2 months later...
artistsl Enthusiast
artistsl
Posted

Please keep us posted on what you find regarding the process for DH diagnosis. I've had a bilateral rash on my knuckles for eleven years that drives me nuts. Sometimes it itches so bad that it consumes every thought and keeps me awake throughout the night. I went gluten free and after four months it went away entirely for the first time in eleven years. I've performed at least ten gluten challenges on myself and it comes back within 2-6 hours every time I consume gluten. I went to see a dermatologist and she said that she will perform a biopsy and to call her next week when a blister starts to form and from there she will biopsy. She said that sometimes it can take 3-4 biopsies in order to get a positive. So I am thoroughly confused as to whether I need to do a 12 week gluten challenge or just eat it a few times and have it biopsied. ?

 

Hang in there though. Your rash will get better in time. 

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      Thank you so much @suek54 How are you doing today? I spoke too soon yesterday. Something (I can only think gluten-free sweets or a can of soft drink) set me off yesterday. Had a bath, applied some cream, still itching so applied some steroid and was awake until 3am. It's so frustrating. Always 2 steps forward, 1 step back. I am at work now and going to play it very much on the very safe side with food for the next few days.  My derm appointment is less than a week away. I will update on here because I do feel it important to help others. 
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