DH and 28 weeks pregnant

[Hajarr]

Hi, I have had this intensely itchy/burning/hot rash for five weeks now. It started on my legs and had spread absolutely everywhere, even my face and scalp are red and itchy. I thought it was PUPPPs and have had no relief all this time, except short term with ice packs. 

I do have celiac disease (and follow the diet) but had never heard of DH until today when the doctor said that’s what it looks like. 

She prescribed Sulfasalazine. Does anyone have experience with DH during pregnancy? What did you do? What helped? Will this stay with me after delivery? Please help, I am miserable and so worried for the baby. 

[cyclinglady]

8 hours ago, Hajarr said:

Hi, I have had this intensely itchy/burning/hot rash for five weeks now. It started on my legs and had spread absolutely everywhere, even my face and scalp are red and itchy. I thought it was PUPPPs and have had no relief all this time, except short term with ice packs. 

I do have celiac disease (and follow the diet) but had never heard of DH until today when the doctor said that’s what it looks like. 

She prescribed Sulfasalazine. Does anyone have experience with DH during pregnancy? What did you do? What helped? Will this stay with me after delivery? Please help, I am miserable and so worried for the baby. 

I do not have DH, but I have been pregnant and understand your concerns.  I have not seen Sulfasalazine prescribed for DH.  I would definitely research the possible effects with a pregnancy.   

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Dapsone is usually the first line of defense with drugs, but these drugs can have serious side effects.  Really controlling your diet seems to be the key.  You may have to be super strict.  Even certified gluten free foods may be too much for DH sufferers.  

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Read through the DH section of the forum.  Look for SquirmingItch’s postings.  She always has good DH advice.  Ice and cold compresses can help with the itching.  Consider the Fasano diet because it sounds like you might have had a gluten exposure somewhere (hidden).  It basically is just whole non-processed gluten free foods.  20 ppm might not be safe enough for you while you are pregnant.  Who knows?  

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[ravenwoodglass]

You have gotten some good advice from C-lady. With your having open lesions please be sure to check your topicals and make sure they don't have any gluten ingredients. You should also drop any iodine as that can keep the lesions active. Cool compresses may give some relief and although it may sound strange you may want to get some cotton gloves to wear to bed so you aren't scratching in your sleep. Time will heal the lesions as long as you are not cross contaminating yourself repeatedly. Do read the Newbie 101 thread at the top of the Coping section as it may help you pinpoint what may be getting you. Before you fill the script talk to the pharmacist and do make sure that your celiac is noted in the Pharmacey's records for you. I hope you get some relief soon. I know all too well how painful DH is. In addition if the doctor that said this was DH is a GP maybe ask for a referrral to a dermatologist just to be sure this isn't something else as you state you have never had DH before.

[GFinDC]

I'm sorry for your condition.  I don't have DH either but have also read that stopping iodine intake including fish, seaweed or other foods that contain it like iodized salt is helpful to stop the skin reaction.  I think milk is another source of iodine.  I don't know why iodine makes the reaction worse but that's what experienced people say it does.

Other than that a whole foods diet of meats, veggies, nuts and fruit is generally a good diet for a celiac.  Dairy is often a problem for the first 6 months or so.

[Metoo]

I had DH not while pregnant but I had to cut out dairy, eggs, fish and salt.  Took Dapsone and was still struggling.   Then eventually cut all packaged gluten free foods...it then took 2 months for the DH to go away, only about 4 weeks for it to stop spreading though!  

Probably not what you want to hear but being really strict with diet is the only way out.