Hi-
This is my first time at this board. I am really excited to find it. My mind is reeling because I have been trying to figure out this rash for 2 yeas and my dermatologist just left a message on my phone saying that my skin biopsy shows that it is DH and I need to go gluten free. I feel like it was a hit and run phone call because that is all he explained. I have been all over the internet today and the rash I have does indeed look like DH. This seems so random to me. I thought I was allergic to pregnancy or breastfeeding hormones because the two times I have had this rash it manifested when I was 2 months post partum with my 2 boys. Has anyone heard of that? I have a few questions and ANY advice would be greatly appreciated.

*Is this related to celiac disease?

*Does this mean I have celiac or should be tested? I am concerned because my grandmother died of stomach and colon cancer. She had digestive problems all of her adult life but lived in Colombia so may have not been diagnosed properly.

*What harm would it do if I didn’t change my diet?

*Does the rash have any long term effects if left untreated?

*Can hormones exasperate the problem or are my pregnancies coincidental?

Thank you all for your time! This has been quite a day and I am very interested in learning all I can about this.
Always Itchy,
Meredith

Hi Meredith, and welcome to these boards.

I will try to answer your questions as best as I can.

*Is this related to celiac disease?

Not only is it related to celiac disease, having DH means that you have celiac disease.

*Does this mean I have celiac or should be tested? I am concerned because my grandmother died of stomach and colon cancer. She had digestive problems all of her adult life but lived in Colombia so may have not been diagnosed properly.

As I said in my previous answer, you have celiac disease, no more testing needed. Everybody with DH automatically has a firm celiac disease diagnosis, but not everybody with celiac disease will have DH. It is very likely that your grandmother had celiac disease. My mother died of liver cancer, and her mother died of stomach cancer. I inherited it from them, as it is genetic.

*What harm would it do if I didn’t change my diet?

You would likely end up like your grandmother. Undiagnosed people with celiac disease, or the ones who refuse to go on the gluten-free diet usually end up dying of intestinal cancers years ahead of their time.

*Does the rash have any long term effects if left untreated?

No, I don't believe it does. But the gluten will cause other damage throughout your body, which can include intestinal damage, malabsorption, osteoporosis, brain damage, neurological problems like neuropathies and ataxia, depression, schizophrenia, MS, fibromyalgia, and a host of other problems.

*Can hormones exasperate the problem or are my pregnancies coincidental?

Yes, pregnancy can trigger celiac disease. As can other stress or an illness.

Meredith, I almost mentioned hormones in my other post to you, but I wanted to stick with the question you asked. Then I saw this post. I do seem to have some type of hormonal fluctuations with my DH and Celiac symptoms.

Are you still nursing, or weaned? I have three boys, and I just weaned my third son at 1 year. I only figured out the DH/Celiac thing in the last four or five months because symptoms were flaring - but I have had mild symptoms (and not so mild, just didn't know brain fog was related) for years. I have heard pregnancy and/or childbirth can be a trigger for many women, and this seemed to be the case with me, at least a trigger for my normally mild symptoms to go into "high gear."

I have been breastfeeding for the past year, so I have not had cycles. Recently, when I had my first cycle, it was accompanied by several days of DH / Celiac symptoms. I have heard others post that their symptoms get worse. In the past, long before diagnosis, I sometimes had canker sores that would show up along with my period. I also had some miscarriages with accompanying mouth sores. Now I know that canker sores are part of my personal symptoms of glutening.

April