Looking for answers!

[Penny88]

Hi,

I have found this forum whilst googling and would be interested to hear your opinions on my story. Over the past 8 months I have developed small lumps on my right hand which are blister like. They are quite small and tend to appear around my joints, they flare up and look red and angry and then settle down after a week or so and disappear again. Sometimes there is one lump, sometimes more. They don't itch but they are sore and can cause pain when bending if they are on my joints. I was eventually referred to rheumatology for an appt after my blood tests came back fine incase it was some kind of arthritis. Annoyingly there were none present when I went for my appt and have never been any present when I have had blood tests due to how long it takes to get a drs appt.

The consultant didn't feel it was arthritis but suspected some kind of autoimmune response. He asked me to make another appt if a lump appeared. I have flared up again today and am trying to get back to the hospital but coincidentally a colleague of mine mentioned they had a family member who got similar lumps.on their feet and had celiac. I did some Googling and feel that I have a number of celiac symptoms. I have always felt I had some kind of allergy or intolerance but thought it was dairy. I suffer from stomach pains, toilet trouble etc but thought my diet was probably the issue. I have seen photos of the rash that some people suffer but it looks more extreme than my lumps and is described as very itchy.

My main question after all that is has anyone suffered a rash that was more like the lumps I describe? I read that celiac can be triggered or be to varying degrees and just wondered if I am starting to see more effects? If you have a more mild case can it flare up and down? I feel like something triggers my symptoms rather than them being present all the time.

I will definitely mention my theory ro my consultant and get more tests but anyone's thoughts would be really appreciated! Thanks

[trents]

@Penny88, why haven't you sought blood testing for celiac antibodies? That is the most direct way to get a diagnosis. The rash that some celiacs get is known as dermatitis herpetiformis or "dermatitis herpetiformis" for short. A minority of celiacs express through dermatitis herpetiformis and it can be quite challenging to get a diagnosis through the dermatitis herpetiformis element since it comes and goes and you can seldom get an dermo doc appointment at the appropriate time. In addition to that, a dermatitis herpetiformis biopsy needs to be done correctly and not every dermatologist knows how to do this. By the way, celiac disease is not an allergy but an autoimmune disorder. 

If antibody testing is positive, there is usually a second stage of diagnosis involving an endoscopy with biopsy of the small bowel lining to check for the damage caused by celiac disease inflammation. It is important to not cut back on gluten consumption until all testing is complete.

Here is an overview of celiac disease blood antibody testing: 

 

 

[knitty kitty]

@Penny88, 

Welcome to the forum!

When exposed to gluten, I get Dermatitis Herpetiformis bumps on my fingers like you describe. I also break out if exposed to foods like dairy, crustaceans, and kelp, because foods high in iodine make the dermatitis herpetiformis bumps flare up.  I had to switch to Himalayan salt because iodized salt made dermatitis herpetiformis flare.  The bumps on my fingers weren't as itchy as dermatitis herpetiformis blisters that occurred elsewhere. Yes, mine would seem to flare up and down without any reason.  

Keep a food/mood/poo'd journal to connect problematic foods.  Don't discontinue nor reduce gluten intake until all testing is done.  

I'm curious...

Do you have really flexible joints?  Double jointed?  Ehlers-Danlos?