Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

New To Dh
0

5 posts in this topic

I am new to all of this, even to talking on forums. I was diagnosed with celiac in 2005, probably had it for the twenty years previous. My symptoms weren't the normal gastro ones, but the main ones were that I had extremely severe leg cramps, was iron deficient anemic, and was a very gassy person. I've been gluten free since my diagnosis and all my symptoms disappeared. Even with an accidental glutening I would have no reaction. And then comes July 16th and I break out in these little welts that I thought resembled bug bites on the top of both legs, behind each knee, and a few on my stomach and lower back. The welts turned into blisters and started to itch like crazy. I spent a good deal of time searching online as to what it could possible be but it wasn't til last Friday that I suspected DH. I saw a doctor on Monday (not a dermatologist, that appt. will take 3 weeks) and when I suggested DH, he did some checking online and said it looks like it to him. My question is, can I be gluten-free for seven years and now break out with this rash? After reading the threads on this forum and all about the iodine thing I am sort of in disbelief. My husband wants to believe it's poison ivy even though he knows it isn't.

0

Share this post


Link to post
Share on other sites


Ads by Google:

Well, tetlyt, either you really did get into some poison ivy, oak or whatnot OR you got glutened & didn't know it. Actually, since I've been here on this board there have been a surprising number of celiac "veterans" such as yourself who have posted here that they suddenly have dh after it having never presented prior. I remember one of the first ones I saw on here was someone who has been on this board & gluten-free since 2008.

It's interesting that you mention you never had all the normal gastro symptoms of celiac. Did you know that celiacs with dh tend by & large NOT to have the normal gastro symptoms? We tend to have far less gastro stuff & less severe. SO, this fits exactly with the dh celiac.

So what does this mean to you? I'm going to say you certainly got glutened and/or you have been getting cross contaminated or glutened far more than you suspected all along. DH is extremely sensitive to the slightest gluten. You are going to have to be ultra careful! DH is NOT fun!!!!!!!!!!!!! As you are finding out.sad.gif

Read some of the threads in this dh forum & you will find lists of things to do to help with the itch as well as limiting your iodine intake & why.

I'm so sorry this happened to you but from here on out when you get cc'd you will likely break out in dh. So now you will know when you get cc'd or glutened. Fun, fun. NOT! ph34r.gif

0

Share this post


Link to post
Share on other sites

Obviously you are right! I have never (in the past) been too concerned about cc when eating out. I have never been concerned with whether or not products were made in dedicated facilities or not. My son has always been my barometer as to whether I had been glutened because he always reacts. There have been occasional times, not too many. I have been thinking that being gluten free isn't so bad, except for social situations, I even eat healthier. I guess everything changes now. I have a vacation scheduled in Mexico in less than two weeks and I'm nervous to go. I will try to do the low/no iodine thing until we leave at least. My last possible cc was Sunday evening, do you think I have finished breaking out from that or can it still come out?

0

Share this post


Link to post
Share on other sites

Oh gosh tetley, it's hard to say if you're done or not. Everyone is an individual --- even with dh. But I will say that the low iodine (thyca.org) works pretty quick for all of us. Again, individuals, but for me low iodine (li) I start to not itch in about 3-4 days & by the time 7 days has come I'm healing up. My husband seems to take about 10 days for things to begin to get better but then it goes real fast for him.

I will warn you though that when you go back on the iodine you may break out again. You see, the IgA is in your skin now & iodine can really fire it up. One of our members says gluten lights the fire but iodine keeps it burning & that is such a perfect analogy.

It might be time for you to have a "refresher course" on cross contamination especially if you have a shared household. This link should help:

http://www.celiac.com/gluten-free/topic/91878-newbie-info-101/

Remember it's not just the dh which is a MAJOR PITA, but the unseen, unknown damage to your gut & risk of other AI diseases that makes it sooo important not to get cc'd. I know you know this & I'm not honking on you --- just trying to gently remind you.

0

Share this post


Link to post
Share on other sites

All good advice from Squirmingitch, except re iodine, which we disagree about. I have never been able to detect an effect from iodine, and I choose not to mess with iodine in my diet due to frequency of thyroid diseases in my family. You will get better if you concentrate on eliminating gluten. I think people should experiment with iodine limits, don't assume automatically that you need to eliminate it. There are many factors to take into account.

Tetleyt, your experience parallels mine. For years I controlled GI symptoms by limiting gluten, but not strictly. I had no noticeable DH symptoms. Then one day I had a big gluten meal when I felt it was socially necessary. A few days later I had the start of my major DH outbreak.

Only when I got rid of all the minor gluten sources, and the accidental glutenings, did things start to improve.

But realistically, I was probably damaging my GI system even previously, because I feel much better now than I did then.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,352
    • Total Posts
      920,502
  • Topics

  • Posts

    • This is EXACTLY what happens to me. It has twice now and both times was after both glutening episodes but once it was the day after and the other time it was a week and a half. So I'm still not sure if it's related or strange bug bites...

      Did they stop happening when she stopped being glutened? Did you decide they were definitely related? I'm really confused by this and would love to know whether to insecticide my house or....
    • Thankyou both! I was wondering if my high levels left much doubt on the diagnosis. I don't see the GI until the 15th Sep and I don't think I can stand to eat gluten in that time. If he tells me to I will do so after then. After 25 years of symptoms I don't think there is much chance of healing my bowel In a couple of weeks. I'm actually terrified of the damage they might find. But I think I will need the endo since there may be other things going on with me. So great they didn't put your son through the biopsy! Once I have a formal diagnosis I have my kids to worry about also. I can't even stand the thought of my daughter having a blood test. I think she would need to be sedated as she is so fearful and pain sensitive. My son is not yet 2 so I don't think they will test him. I'm feeling so off at the moment. I think I have some anxiety and reflux going on complicating things quite a bit.
    • My son's antibodies were 300. Based on his extremely high levels, his pediatric GI suggested genetic testing instead of the biopsy. Genetic testing can't diagnose celiac on its own but combined with such high levels, the gi dr was confident a positive genetic test would confidently diagnose celiac. He warned that biopsies are small snapshots of the intestine and can miss damage. He said this is an approach used very often in Europe but not as much in the US. What sold me on that approach was the ability to put my son directly on a gluten free diet instead of waiting three weeks for the biopsy, during which time he would continue to eat gluten and feel terrible. I'm not sure if this is more common with younger patients though (our son is two), based on the idea that he's had less time to inflict damage that would show in a biopsy? We are very happy that we immediately started the gluten free diet and chose the genetic testing. Our son got the proper diagnosis and his recent number shows a drop to 71 after only 4.5 months gluten free! Not sure if this helps. Good luck and I hope you feel better soon!
    • We have been off gluten for a while now, and symptoms return when I've allowed gluten full meals… so something still isn't sitting right with me.  Checking with her doc about seeing a pediactric GI although I'm not sure how long that will take since we live in small town America. I know she didn't get at least one of the recommended full panel tests but maybe two, can someone help clarify, or is she missing two? DGP for sure and possibly EMA? And if I understand what I'm reading in other posts that the DGP can be more accurate? Thanks Her blood panel results: Ttg ab iga <.5u/ml ttg igg <.8u/ml aga ab iga <.2 u/ml aga an igg <.7u/ml iga 61mg/dL  
    • I was tested for the full panel, I believe. I had normal values for t-transglutaminase (ttg) igg,t-transglutaminase (ttg) iga, deamidated gliadin abs igg, deamidated gliadin abs iga, and immunoglobulin a qn serum.  
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

    There are no registered users currently online

  • Member Statistics

    • Total Members
      61,416
    • Most Online
      1,763

    Newest Member
    djs2117
    Joined