Lots of advice needed – bloods and endoscopy waiting times
My situation feels a bit unusual so I'd really appreciate some advice. I had about two months of being as itchy as it is possible to be (symmetrically on both sides of my body, arms, legs, top of my butt, and at my scalp line). I cannot overstate how itchy it was – it would wake me in the night, I was itching 24 hours a day and I was seriously questioning how I could carry on. After the doctor told me twice it was eczema (it wasn't) a really helpful doctor wondered about Dermatitis Herpetiformis and gave me a blood test.
These are the results:
IgA Antibodies to Endomysium: POSITIVE (no figures are given)
Tissue Transglutaminase IgA level 8.1 u/ml: Equivocal (underneath it says "Comment Consistent with Coeliac disease")
Now I'm waiting for referrals to both gastroenterology and dermatology. My first question is how long is this likely to be? I've been told to keep eating gluten until it happens, but surely if it's a long time it's better to stop damaging myself and just do a gluten challenge in the weeks before the appointment? I tried to ask the GP that but was told they have no idea and I just need to wait.
And then the other weird thing – the itching has cleared up and I haven't cut down on the gluten. Is this consistent with DH/Coeliac? Could it just have been a flare, or was it something else after all? I even tried to get a private appointment while it was bad, but I ended up cancelling because even that was weeks away and I was scared I'd waste the money if the lesions couldn't be biopsied anymore. I'm covered in scars but the itching has stopped (for about 3 or 4 weeks now) and I'm at least so thankful for that. I do feel a bit abandoned by the NHS though, considering how bad I was last time I spoke to the doctor.
So:
- How long is it likely to be before I get the gastro appointment and biopsy?
- Would you keep eating gluten until then, or stop until I hear I have an appointment?
- Considering the Tissue Transglutaminase IgA is only equivocal, is there any way this isn't CD/DH if the antibody test is positive?
- Is it normal for symptoms to come and go (flare) if you have CD/DH?
For what it's worth, I don't have any gut symptoms, but do have things like brain fog and fatigue which could theoretically be caused by gluten.
Thank you so much in advance!