Confused over coeliac diagnosis

Gina, Great question!!  I'd say that yes, you have CD beyond a shadow of a doubt.  However, is a dermatologist comfortable diagnosing you as such? Did s/he refer you to a GI doc?  Personally, I would follow up with one and I think GIs are better positioned to help you with the lifestyled adjustments you'll need to make post-diagnosis...

I live in the US, but it's my understanding that in the UK/Europe, there's a prescription that comes with CD diagnosis (and not other gluten intolerances) so that you would qualify for GF foods, at least a monthly ration of the basics. So, nailing down the official diagnosis has that practical benefit.  It also has real medical implications for any patient. I would think that as someone with an auto-immune disease, you would be watched for other conditions that you could be more likely to have down the road (thyroid, Sjogren's, diabetes, rheumatoid arthritis, etc.). Plus, gluten is insidious and it takes a while to be sure you're really avoiding every last crumb and microscopic amount...most doctors follow up with blood work, your own symptoms and a check up to be sure you're getting well.  Many see to it that you have a nutritionist consultation to get you well on your way soon after the diagnosis.

I'm not sure how it is where you live, but frankly, we've seen loads of dermos and I can't see any of them doing all of that...!  In our case, it's only my son who has CD, and he has eczema, not DH, so his rashes persist as do our dermo visits!  I hope you find you're free and clear of your skin conditions once you shore up the proper diagnosis and then (and only then) stop consuming gluten...

GOOD LUCK!!!

There is an antibiotic called dapsone that is very effective for clearing up the rash caused by gluten sensitivity.

I was diagnosed with gluten sensitivity through a blood test.  The norms were 1-9 and mine was 30.  I was told to immediately remove all gluten from my diet, which has been an ongoing project.  However, when I did, the rash lessened.  The next week I ate all the gluten I wanted, and the rash increased dramatically. 

I have been to many dermatologists over the years, and have had cancer biopsies, and other biopsies, and not one dermatologist picked up on the gluten component.  They just told me to stop scratching it, which made me feel ashamed and like it was my fault.  Anyone with this rash knows how irritating it is.

My doctor who identified the gluten sensitivity won't prescribe the antibiotic because she says gluten rashes look like Herpes rashes, and mine is different, so I don't know what to do about that.  

I did stop going to dermatologists about 5 years ago, as they didn't seem knowledgeable about the cause of my rash then.

I don't know what the next step is for me, but at least I now have a little bit more information.

Hi Gina

I think your first step should be to seek clarification of the letter from your dermatologist. Phone their offices and tell the receptionist you're confused and would like clarification from your dermatologist as to exactly whether you have DH and thus coeliac and what they consider is your next step.

Coeliac diagnosis is difficult to obtain. Many doctors say that biopsy is the only 100% diagnosis yet I find many doctors seem reluctant to order one and say that you may or may not have coeliac but just avoid gluten. I'm not sure if they realise that to the patient this is insufficient and confusing. Given that, I know someone with a diagnosis yet biopsy was negative and only symptom is a "smelly poo", no GI pain or anything else. Go figure.

Blood work often gives false negatives. Any doctor will (eventually if pressed) tell you that.

I've been fighting for a diagnosis for 30 years. I have all the severe symptoms. Just this year I've finally managed to get my first blood tests after 30 years of asking! The results were negative but positive for the antibodies. Doctor advise was maybe yes maybe no so just avoid. The fact that if I eat gluten i double over in pain and have to rush to the toilet and so many other symptoms is ignored. Recently I've started getting

a skin reaction which I'm sure is DH.

I have an endocrinologist based on family autoimmune history of Hashimotos, hypothyroid, psoriatic arthritis. He did bloods which were negative so said nope. Then saw the skin reaction i have and asked if from gluten. I said yes along with pain, severe boating etc. He said yes you do have coeliac as that looks like DH. So, in the space of less than 5 minutes an endocrinologist said no and yes to my being ceoliac!

He then said that bloods are very unreliable. (Gee so why rely on them so much???) . He then said that he prefers avoidance of biopsy as they can cause more problems. When asked he admitted that medical facilities canot properly sterilise or clean the equipment used and minute particles remain in them from previous patients and can cause infections. Since the onIy cure is total avoidance of gluten he avoids biopsies. I will be avoiding a biopsy!

The medical industry just doesn't know enough about this autoimmune condition yet in my opinion, and that of many doctors that I've seen, but they like to tell you they do. A case of (the medical industry) not knowing what you don't know! Which is fine if you admini it and dangerous when you don't believe it.

Good luch Gina but start with your dermo first. You have a specialist there so fully utilise them.

Thank you all for taking the time to respond to my question and give so much detail.  It is much appreciated.

My confusion arose from the doctor saying he suspected DH but was unwilling to diagnose CD.  I thought they were synonymous   It's so annoying when physicians hedge their bets like that but yes, I can see that being a dermatologist, not an enterologist may have caused his reluctance to commit.

I definitely will be asking for clarification.  The next test is a consultation with a GI specialist, an endoscopy and gut biopsy, it's just that it's such a long time inbetween appointments that I thought I'd put the question out here to see what other people thought, and I do suspect that those results will be inconclusive too as I am not eating gluten - the dermatologist and GP told me to stay off it although I know that can affect test results.

I just needed a diagnosis because I want to know whether I'm at increased risk of the associated conditions such as osteoporosis, lymphoma etc and also for prescription purposes as Aveline correctly pointed out, and Bella, you are right too - I don't think physicians do understand the importance to the patient of a clear, clinical diagnosis.

Clinical signs all point to CD - rash, bloating, wind, diarrhoea, anaemia, improved symptoms when avoiding gluten - it's just frustrating that all the test results don't give a clear yes or no answer and no physician will commit to a CD diagnosis without clear results.  Susie - he did say we could try dapsone if the rash doesn't improve - surely he wouldn't suggest dapsone if he wasn't sure it was DH - and if it IS DH, then it has to be CD surely?  (See why I'm confused lol?)

Susie - yes, I too was told to stop scratching.  Like Derrrr, why didn't I think of that????

I'm sorry that we all seem to have to battle for a diagnosis but want to say Thanks again to you all and I hope you all feel as well as you possibly can.

Gina