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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 Community Regular
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 Community Regular
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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      Do you have the standard range for the test results you received? A level of anti-tTG2 antibodies at least 10x the standard range is almost certainly (>98%) due to coeliac disease. Moderately raised levels can be caused by other conditions as well as coeliac disease. Accuracy of the No-Biopsy Approach for the Diagnosis of Celiac Disease in Adults: A Systematic Review and Meta-Analysis It is possible to have latent or early stage coeliac disease without histological changes visible by microscope. As has been suggest in this thread, if the repeat test comes up negative and serology is high, request an HLA genetic test from your specialist. Only 40 % of the population carries an HLA gene variant enabling the development of coeliac disease - if you test negative for this, it is quite unlikely that you have coeliac disease.  
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      The Struggle Has Overtaken Me

      By Wheatwacked · Posted

      Hi @Ginger38, By now you know that these things improve without gluten. I once saw an interview with a corporation executive where he proudly declared that his wheat products are more addictive than potato chips. Dr Fuhrman (Eat to Live) said find foods that are friendly to you to be friends with.  
    • cristiana
      Coeliac or not coeliac

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      Hi @CC90 Ah... that is very interesting.  Although it is very annoying for you to have to go through it all again, I would say that almost sounds like an admission that they didn't look far enough last time?   I could be wrong, but I would not be at all surprised if they find something on the next attempt.  Coeliac damage can be very patchy, as I understand it, so that's why my own gastroenterologist always likes to point out that he's taken lots of samples!  In the kindest possible way (you don't want to upset the person doing the procedure!) I'd be inclined to tell them what happened last time and to ask them in person to take samples lower down, as  if your health system is anything like the one in my country, communication between GPs, consultants and hospitals isn't always very good.  You don't want the same mistake to be made again. You say that your first endoscopy was traumatic?  May I ask, looking at your spelling of coeliac, was this done at an NHS hospital in England?  The reason for the question is that one of my NHS diagnosed friends was not automatically offered a sedative and managed without one.  Inspired by her, I tried to have an endoscopy one time, in a private setting, without one, so that I could recover quicker, but I had to request sedative in the end it was so uncomfortable.    I am sorry that you will have to go through a gluten challenge again but to make things easier, ensure you eat things containing gluten that you will miss should you have to go gluten free one day. 😂 I was told to eat 2 slices of normal wholemeal bread or the equivalent every day in the weeks before , but I also opted for Weetabix and dozens of Penguin chocolate biscuits.  (I had a very tight headache across my temple for days before the procedure, which I thought was interesting as I had that frequently growing up. - must have been a coeliac symptom!)  Anyway, I do hope you soon get the answers you are looking for and do keep us posted. Cristiana  
    • CC90
      Coeliac or not coeliac

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      Hi Cristiana   Yes I've had the biopsy results showing normal villi and intestinal mucosa.  The repeat endoscopy (requested by the gastro doc) would be to take samples from further into the intestine than the previous endoscopy reached.      
    • Wheatwacked
      Coeliac or not coeliac

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      Transglutaminase IgA is the gold-standard blood test for celiac disease. Sensitivity of over 90% and specificity of 95–99%. It rarely produces false positives.  An elevated level means your immune system is reacting to gluten.  Non-Celiac Gluten Sensitivity (NCGS) does not typically cause high levels of tTG-IgA. Unfortunately the protocols for a diagnosis of Celiac Disease are aimed at proving you don't have it, leaving you twisting in the wind. Genetic testing and improvement on a trial gluten free diet, also avoiding milk protein, will likely show improvement in short order if it is Celiac; but will that satisfy the medical system for a diagnosis? If you do end up scheduling a repeat endoscopy, be sure to eat up to 10 grams of gluten for 8 - 12 weeks.  You want  to create maximum damage. Not a medical opinion, but my vote is yes.
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