Newbie looking for advice

[MommyBunny]

Greetings!

I went gluten-free because I went on the Atkins diet. Two months on Atkins, and I noticed that my cystic acne cleared up, my stomach and intestinal trouble resolved (which I had attributed to my gall bladder removal), and I felt amazingly better. I lost weight, and felt good, even energized.

Then, I drank a glass of alcohol.

I wound up with DH that covered my body from the neck down. Not knowing it was DH, I thought it was stress hives or maybe chicken pox, and after a week of pox, I scheduled an appointment with the doc. They couldn't see me until the following week (holiday weekend). It was also my birthday weekend. Not wanting to cheat on my diet too much, I had only a small sliver of cake. The next day, I was violently ill. At one point the cramps were so severe I couldn't stand. It was bad enough that I had to talk my husband out of taking me to the ER.

Finally make it to the doc, and she diagnosed me with DH right away, and told me to stay away from gluten permanently. I asked her if I should reintroduce gluten to get tested, and she emphatically said no. If I'm getting that kind of reaction from barley alcohol & cake, and have the DH rash, it would be detrimental to introduce it for weeks after being off it for so long. Stay off gluten, have a nice day.

My doc is at the VA, and they're very short and sweet there: all the docs are, not just her. She didn't mention anything about celiac, just told me to stay away from gluten, and she sent me on my way. After doing research, it seems that not all celiacs get DH, but only celiacs get DH. So, I guess I'm celiac? That seems like something that would require a nutritionist or some sort of specialist. When my husband was diagnosed with diabetes, they told him to stay off sugar, and then did a nutritionist consult. 

Should I push to talk to any kind of specialists? If I ask for a recommendation, she can get me one.

Should I tell my relatives? I have several relatives with autoimmune disorders like thyroid issues & lupus, and my aunt actually died of Sjogren's.

Sorry if I'm rambling. I feel a little lost. 

[kareng]

1 hour ago, MommyBunny said:

Greetings!

I went gluten-free because I went on the Atkins diet. Two months on Atkins, and I noticed that my cystic acne cleared up, my stomach and intestinal trouble resolved (which I had attributed to my gall bladder removal), and I felt amazingly better. I lost weight, and felt good, even energized.

Then, I drank a glass of alcohol.

I wound up with DH that covered my body from the neck down. Not knowing it was DH, I thought it was stress hives or maybe chicken pox, and after a week of pox, I scheduled an appointment with the doc. They couldn't see me until the following week (holiday weekend). It was also my birthday weekend. Not wanting to cheat on my diet too much, I had only a small sliver of cake. The next day, I was violently ill. At one point the cramps were so severe I couldn't stand. It was bad enough that I had to talk my husband out of taking me to the ER.

Finally make it to the doc, and she diagnosed me with DH right away, and told me to stay away from gluten permanently. I asked her if I should reintroduce gluten to get tested, and she emphatically said no. If I'm getting that kind of reaction from barley alcohol & cake, and have the DH rash, it would be detrimental to introduce it for weeks after being off it for so long. Stay off gluten, have a nice day.

My doc is at the VA, and they're very short and sweet there: all the docs are, not just her. She didn't mention anything about celiac, just told me to stay away from gluten, and she sent me on my way. After doing research, it seems that not all celiacs get DH, but only celiacs get DH. So, I guess I'm celiac? That seems like something that would require a nutritionist or some sort of specialist. When my husband was diagnosed with diabetes, they told him to stay off sugar, and then did a nutritionist consult. 

Should I push to talk to any kind of specialists? If I ask for a recommendation, she can get me one.

Should I tell my relatives? I have several relatives with autoimmune disorders like thyroid issues & lupus, and my aunt actually died of Sjogren's.

Sorry if I'm rambling. I feel a little lost. 

So they did a biopsy next to one of the sores and found DH?  Because that is the only way to diagnoses it.  But a diagnosis of DH is a diagnosis of Celiac.

 

" Dermatitis herpetiformis (DH) is an itchy, blistering skin condition that’s a form of celiac disease. The rash usually occurs on the elbows, knees and/or buttocks, and is characterized by its bilateral nature; both knees (and/or both arms) are affected, seldom just one. ..."

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 "skin biopsy should be done on a non-affected portion of the skin near the rash when there is an outbreak. It’s not necessary to perform an intestinal biopsy to establish the diagnosis of celiac disease in a patient with DH; the skin biopsy is definitive. J "

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[GFinDC]

Hi MommyBunny,

Yes, if you have DH, then you have celiac disease.  There is subsection of the forum for DH, where you can find helpful information on it.

IMHO you should tell your relatives about your celiac disease as it is genetically tied in.  Some of them may carry the genes for celiac disease also.  The genes don't mean you will definitely get celiac disease, but mean you might get it.  If you have little bunnies they should be tested for celiac disease every couple years or sooner if they show digestive symptoms.  The trick to celiac disease is that digestive symptoms are not the norm.  There are many more people walking around with celiac disease and no digestive symptoms than there are with digestive symptoms.  Some people have no symptoms at all, and that is called silent celiac.  So going by symptoms only can be deceiving.

Welcome to the forum!

 

[MommyBunny]

Kareng-- No, they didn't do a biopsy. By the time I got to the doc, two weeks had already passed, and she was concerned about a false negative. Should I react in the future, she told me I can get a biopsy done then.

I have a lot of food allergies & I keep food journals, so it was easy to pinpoint what happened. And I'm staying away from gluten and not having a reaction, so the doc & I are confident about what happened.

GFinDC--

Thanks for the advice on notifying my family. I'll keep an eye out for my 14YO, just in case. She has ADHD, and I've heard there's a link to celiac  

And thanks for the heads-up on the DH forum. I'll definitely check it out!