Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Celiac.com!
    eNewsletter
    Donate

DH and 28 weeks pregnant

Hajarr

By Hajarr
in Dermatitis Herpetiformis

Recommended Posts

Hajarr Newbie
Hajarr
Posted

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. 

Link to comment
Share on other sites
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


cyclinglady Grand Master
cyclinglady
Posted
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.   

Open Original Shared Link

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.  

Open Original Shared Link

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?  

Open Original Shared Link

Link to comment
Share on other sites
ravenwoodglass Mentor
ravenwoodglass
Posted

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.

Link to comment
Share on other sites
GFinDC Veteran
GFinDC
Posted

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.

Link to comment
Share on other sites
Metoo Enthusiast
Metoo
Posted

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.  

 

Link to comment
Share on other sites

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      121,091
    • Most Online (within 30 mins)
      7,748
    Grammar B
    Newest Member
    Grammar B
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Waiting for urgent referral.

      By trents · Posted

      Oh, okay. The lower case "b" in boots in your first post didn't lead me in the direction of a proper name. I thought maybe it was a specialty apothecary for people with pedal diseases or something.
    • Scott Adams
      50 YO Male Recently Diagnosed with Celiac Disease

      By Scott Adams · Posted

      In the Europe the new protocol for making a celiac disease diagnosis in children is if their tTg-IgA (tissue transglutaminase IgA) levels are 10 times or above the positive level for celiac disease. According to the latest research, if the blood test results are at certain high levels that range between 5-10 times the reference range for a positive celiac disease diagnosis, it may not be necessary to confirm the results using an endoscopy/biopsy: Blood Test Alone Can Diagnose Celiac Disease in Most Children and Adults TGA-IgA at or Above Five Times Normal Limit in Kids Indicates Celiac Disease in Nearly All Cases No More Biopsies to Diagnose Celiac Disease in Children! There are other things that may cause elevated tTg-IgA levels, but in general a reaction to gluten is the culprit:    
    • cristiana
      Waiting for urgent referral.

      By cristiana · Posted

      Hi @trents Just seen this - Boot's is a chain of pharmacies in the UK, originally founded in the 19th Century by a chap with the surname, Boot.  It's a household name here in the UK and if you say you are going to Boot's everyone knows you are off to the pharmacist! Cristiana
    • Denise I
      Celiac Dietician

      By Denise I · Posted

      I am looking to find a Celiac Dietician who is affiliated with the Celiac Disease Foundation who I can set up an appointment with.  Can you possibly give some guidance on this?  Thank you!
    • Posterboy
      14 year old with Celiac & EOE still suffering...

      By Posterboy · Posted

      Nacina, Knitty Kitty has given you good advice. But I would say/add find a Fat Soluble B-1 like Benfotiamine for best results.  The kind found in most Multivitamins have a very low absorption rate. This article shows how taking a Fat Soluble B-1 can effectively help absorption by 6x to7x times. https://www.naturalmedicinejournal.com/journal/thiamine-deficiency-and-diabetic-polyneuropathy quoting from the article.... "The group ingesting benfotiamine had maximum plasma thiamine levels that were 6.7 times higher than the group ingesting thiamine mononitrate.32" Also, frequency is much more important than amount when it comes to B-Vitamin. These are best taken with meals because they provide the fat for better absorption. You will know your B-Vitamin is working properly when your urine becomes bright yellow all the time. This may take two or three months to achieve this.......maybe even longer depending on how low he/you are. The Yellow color is from excess Riboflavin bypassing the Kidneys....... Don't stop them until when 2x a day with meals they start producing a bright yellow urine with in 2 or 3 hours after the ingesting the B-Complex...... You will be able to see the color of your urine change as the hours go by and bounce back up after you take them in the evening. When this happens quickly......you are now bypassing all the Riboflavin that is in the supplement. The body won't absorb more than it needs! This can be taken as a "proxy" for your other B-Vitamin levels (if taken a B-Complex) ...... at least at a quick and dirty level......this will only be so for the B-1 Thiamine levels if you are taking the Fat Soluble forms with the Magnesium as Knitty Kitty mentioned. Magnesium is a Co-Factor is a Co-factor for both Thiamine and Vitamin D and your sons levels won't improve unless he also takes Magnesium with his Thiamine and B-Complex. You will notice his energy levels really pick up.  His sleeping will improve and his muscle cramps will get better from the Magnesium! Here is nice blog post that can help you Thiamine and it's many benefits. I hope this is helpful but it is not medical advice God speed on your son's continued journey I used to be him. There is hope! 2 Tim 2:7 “Consider what I say; and the Lord give thee understanding in all things” this included. Posterboy by the grace of God,  
×
×
  • Create New...