Possible Celiac Symptoms - looking for a diagnosis

[Tijmen]

Hi Everyone - let me first start by showing appreciation for everyone here. It has been so helpful to feel supported.

I have been struggling with an itchy skin since the beginning of 2019. At first I contracted scabies which lasted for about 9 months. Been treated for it likewise and finally got rid of it after several treatments. About half a year later I started feeling itchy again. Of course, my mind wandered towards scabies again - but the rash was less noticeable at night, and treatments only gave temporary relief (for a couple days). The rash started on my wrists and has been developing to my kneecaps, elbows, buttocks and fingers. In addition to these symptoms I have big itchy bumps on my scalp - which led me to consider Celiac as a possible diagnosis. Also at times my knee joints hurt and start getting really warm and inflamed. I have no problems in my intestines, but I read that the majority of people with skin related celiac issues don't present those.

Next week I'm meeting my doctor to discuss possible tests, but do these symptoms sound like anything near celiac? So I can suggest starting the testing.

Thanks in advance  

[trents]

The celiac rash is called dermatitis herpetiformis and there are little blisters in the bumps. Does that describe your rash?

[Tijmen]

15 minutes ago, trents said:

The celiac rash is called dermatitis herpetiformis and there are little blisters in the bumps. Does that describe your rash?

Not necessarily, occasionally I do find blisters inbetween my fingers. But on knees & elbows it presents more with a red patch.

[trents]

My understanding is that the majority of celiacs who have DH also have damage to the small bowel lining typical of celiac disease in general and that only a small percentage do not have gut involvement. But you need to realize that a many celiacs who do have damage to the villous lining of the small bowel are "silent" celaics. That is, they are asymptomatic. 

[Tijmen]

1 minute ago, trents said:

My understanding is that the majority of celiacs who have DH also have damage to the small bowel lining typical of celiac disease in general and that only a small percentage do not have gut involvement. But you need to realize that a many celiacs who do have damage to the villous lining of the small bowel are "silent" celaics. That is, they are asymptomatic. 

Okay! So referring to my situation it is unlikely to be DH due to no involvement in the guts? If I understood correctly?

[trents]

I'm saying that many who do have celiac disease have gut involvement but do not have symptoms. Their gut doesn't hurt and they don't have diarrhea, etc. When they have the endoscopy with biopsy and it comes up positive (i.e., it shows damage to the villous lining of the small bowel) even though they were experiencing no discomfort.

[Tijmen]

2 minutes ago, trents said:

I'm saying that many who do have celiac disease have gut involvement but do not have symptoms. Their gut doesn't hurt and they don't have diarrhea, etc. When they have the endoscopy with biopsy and it comes up positive (i.e., it shows damage to the villous lining of the small bowel) even though they were experiencing no discomfort.

Okay! Clear - so then they could indeed have DH but without any diarrhea etc. What kind of testing would you suggest?

[trents]

The first stage of testing for celiac disease is a blood draw to check for the antibodies that are produced by celiac disease inflammation in the lining of the small bowel. If there are any positives in the antibody testing, physicians will typically order a second stage of testing, i.e., the endoscopy with biopsy of the small bowel lining. In the UK and some other European countries, if the antibody testing produces positives that are 10x normal levels then they will often diagnose celiac disease without a biopsy.

For those with DH, a skin biopsy can be used to diagnose celiac disease without an endoscopic procedure as celaic disease is the only known cause for DH.  This approach can be difficult to arrange since it should be done during a fresh outbreak of DH and it can be very difficult to schedule an appointment with a dermatologist on short notice. Also, many dermatologists are not familiar with DH and how to do the biopsy properly. The samples need to be taken from skin adjacent to the bumps, not on the bumps.

But the first step would be the blood antibody testing. At bare minimum, the physician should order a test known as "total IGA" and one known as "tTG-IGA". There are other antibody tests that can be run but many healthcare systems don't give the physician much latitude to go beyond those two, at least initially.

Edited October 5, 2023 by trents