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What does it mean by 'routine phone call from GP' to discuss blood test result in UK?

salsasaki

By salsasaki
in Dermatitis Herpetiformis

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salsasaki Newbie
salsasaki
Posted

Hi, I have extremely itchy rashes all over my body which my GP suspected as Dermatitis Herpetiformis and ordered a blood test to confirm it last week. I phoned the surgery this afternoon and the receptionist just said that the results have come back, and I will get a routine phone call from the GP to discuss the result, which the earliest slot is 2 weeks from now. I tried to ask about the result, but the receptionist said that she was unable to tell me, I had to wait for the phone call from the GP to know that.

I'm feeling anxious right now and don't think I can wait 2 weeks to know the result and what should I do next. The burning itch is driving me crazy, and I really want to start eating gluten-free if that will make me feel better. Does anybody have any advice on what should I do now? And about the 'routine phone call' to discuss the result, does that mean that my blood test result is probably not serious/not urgent? I live in Wales, UK.

Any help is very much appreciated, many thanks!

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trents Grand Master
trents
Posted

Even after the physician discusses the results with you there is a very good chance he will want to set you up with a GI doc for an endoscopy with biopsy of the small bowel lining to confirm the results of the blood work which is the normal process unless the blood antibody tests are 10x normal levels. So, don't start eating gluten free until all testing is complete, including the endoscopy/biopsy if that will be ordered. Starting a gluten-free diet now would sabotage the results of the biopsy.

Rogol72 Collaborator
Rogol72
Posted

If it's suspected Dermatitis Herpetiformis and the itch is that bad, you should be referred to a Dermatologist for a skin biopsy ASAP to either confirm or rule out DH. I have DH and the itch can be terrible. A blood test won't confirm DH, only a skin biopsy will. A positive diagnosis for DH is a positive diagnosis for Coeliac Disease according to the dietitian with the Coeliac Society of Ireland. Dapsone helps to relieve the itching of DH until a gluten free diet takes effect., though it has some side effects and requires monitoring.

Is it possible to see a dermatologist privately without an NHS or GP referral?

https://www.bad.org.uk/pils/dermatitis-herpetiformis-gluten-sensitivity/

Scott Adams Grand Master
Scott Adams
Posted

Another member here who has DH reported that the very best thing to stop the itching was grinding up a 25mg pill of Benadryl (or perhaps get capsules and just open one) into a little water, then rubbing the solution over the rash or itchy areas. Just be careful about using too much too often, as you can absorb the drug through the skin.

salsasaki Newbie
salsasaki
Posted
  • Author

Hi all, thank you for your replies!

I just went to the surgery this morning to ask for a bit more details about the blood test results, and they said that the TTG-IgA came back normal. They required me to book a phone call with the GP not because of the coeliac test result, but because of the full blood count.

Does this mean that I don't have coeliac and my rashes are not DH? Or should I ask the doctor about doing the skin biopsy?

salsasaki Newbie
salsasaki
Posted
  • Author
13 hours ago, Rogol72 said:

Is it possible to see a dermatologist privately without an NHS or GP referral?

Unfortunately seeing a dermatologist privately seems a bit out of my budget. Do you think I should ask my GP to be referred to the dermatologist?

12 hours ago, Scott Adams said:

Another member here who has DH reported that the very best thing to stop the itching was grinding up a 25mg pill of Benadryl (or perhaps get capsules and just open one) into a little water, then rubbing the solution over the rash or itchy areas. Just be careful about using too much too often, as you can absorb the drug through the skin.

I might try Benadryl as a temporary solution for the itchy before getting the chance to speak to my GP. Thanks very much!

shadycharacter Enthusiast
shadycharacter
Posted
55 minutes ago, salsasaki said:

Hi all, thank you for your replies!

I just went to the surgery this morning to ask for a bit more details about the blood test results, and they said that the TTG-IgA came back normal. They required me to book a phone call with the GP not because of the coeliac test result, but because of the full blood count.

Does this mean that I don't have coeliac and my rashes are not DH? Or should I ask the doctor about doing the skin biopsy?

I think a skin biopsy for DH looks for a slightly different ttg-iga antibody. There are at least three types. Type 2 is associated with gastro symptoms, type 3 with DH, and type 6 with the brain and nerves. I think you can have DH despite being negative on the ttg-iga blood test.

If it's DH it might help to eat less iodine.

 

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Rogol72 Collaborator
Rogol72
Posted
1 hour ago, salsasaki said:

Does this mean that I don't have coeliac and my rashes are not DH? Or should I ask the doctor about doing the skin biopsy?

If he suspects DH, then I don't see why you haven't been referred to a Dermatologist for a skin biopsy to confirm or rule out DH. It could be some other skin condition similar to DH. As shadycharacter said, you can have a negative blood test for Coeliac Disease and a positive skin biopsy for DH as they're two different antibodies.

salsasaki Newbie
salsasaki
Posted
  • Author

I see... I will ask the GP about a skin biopsy and the possibility of having DH with a negative blood test then. Thank you very much!

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      Hi Trents, thank you so much for your help and support. Yes it’s not ideal from my surgery practice. This is just one of the many problems I have experienced with them, we’ve had to pay to go to a private consultant now instead (I’m from South Wales in the UK, spot on about the spelling of “coeliac”! I completely forgot there was another way of spelling it around the world!) The dermatologist I have been seeing over the last few months has been amazing. And thank goodness for places like google and forums like these, I don’t think I would’ve ever thought it could be gluten! Interesting about the iodine. I’ll definitely start to limit this out of my diet. It makes sense as the places of irritation are places I sweat or pressure points (wrists, waist etc.) Dapsone was mentioned in my last appointment also. He’s reluctant to put me on it just yet, probably just until this biopsy is done so we can confirm for definite. At the moment I’m being put on prednisolone (oral steroids) every time I either become glutened or my symptoms reach an ultimate. I think he’s said if I need to be in them for any more than 3 times a year, dapsone will be more considered. I’m keen to go on it as every time I come off the prednisolone I can see the blisters creeping back. I’ve got loads that have burst on my hairline. I also start to get flaky/peeling skin as well which I’m not sure is related?    As well as limiting iodine, is there anything else that might help irritation with sweat? Is it better to wear more loose fitted clothing? Can I apply something to stop the irritation of sweat whilst i’m exercising?    Thanks for all your help so far! I will keep you all updated on my journey! 
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