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

Dh After Being Gluten Free
0

7 posts in this topic

I thought I was one of the lucky ones and didn't have to deal with DH but now I think I have it. I was diagnosed Celiac in July 2010 and have been gluten free since then. My blood work 2 weeks ago said I was doing very well on my diet, no antibiodies. So why do I now develop DH? I may have had an occasional sore through the years but now I have a rash on my upper chest and much of my back. I do know I have been consistant in taking a multivitamin because of my celiac and it has iodine. I don't eat much shellfish but have on occasion eaten halibut that my husband caught himself. Is it all fish or just shell fish that are a problem? I will change my salt too. I have to take thyroid medicine. Do they all have iodine?

0

Share this post


Link to post
Share on other sites


Ads by Google:

I thought I was one of the lucky ones and didn't have to deal with DH but now I think I have it. I was diagnosed Celiac in July 2010 and have been gluten free since then. My blood work 2 weeks ago said I was doing very well on my diet, no antibiodies. So why do I now develop DH? I may have had an occasional sore through the years but now I have a rash on my upper chest and much of my back. I do know I have been consistant in taking a multivitamin because of my celiac and it has iodine. I don't eat much shellfish but have on occasion eaten halibut that my husband caught himself. Is it all fish or just shell fish that are a problem? I will change my salt too. I have to take thyroid medicine. Do they all have iodine?

As far as fish is concerned if it comes from the sea it will be high in iodine.Same for seaweed (and products made with seaweed) or sea vegetables.

My understanding is that all thyroid meds contain iodine.Iodine is essential for thyroid function.

When I was taking a vitamin supplement that contained iodine my DH was the worst I EVER remember it being.

For me it is a balancing act, I take medication for my thyroid,,Iodine is essential for thyroid health and function. but I have DH and the iodine exacerbates my DH .. Finding a balance seems like an impossible task but a very necessary one for my health

I no longer take the vitamin supplement that contained iodine.I watch my sodium intake( I use non-iodized sea salt in limited amounts). I am trying to find the limit of what is to much fish in my diet and My doc retests my thyroid every three months

0

Share this post


Link to post
Share on other sites

Bincongo wrote: "My blood work 2 weeks ago said I was doing very well on my diet, no antibiodies. So why do I now develop DH?"

Assuming it IS DH, I think that DH may be more sensitive to diet than obvious gastro intestinal symptoms are. A year ago when I got DH on my forearms and realised that my GI symptoms really were celiac, all the GI symptoms disappeared immediately with a more strict diet. The DH on the other hand comes back in force whenever I make even a small dietary mistake.

Also, though the DH has improved dramatically in a year it has also spread to some new areas like my upper arms and hairline. This suggest that either there was a certain 'momentum' in the process, or that whatever changes in my body that allow DH to manifest are continuing and causing me to be increasingly sensitive. The same might be true for you.

I guess what I am saying is that perhaps you should consider that your diet isn't strict enough to keep down DH, even though you have no obvious GI symptoms.

I have never tested positive for antibodies in my blood, and I think that blood tests won't be effective for detecting the amount of immune response that will create DH. A celiac needs to be consuming gluten at levels far below what a blood test can pick up, so far as I know.

0

Share this post


Link to post
Share on other sites

I agree with itchy based on my experience. DH seems to appear at lower levels of gluten contamination and can require a more strict diet. Then again, it is a great indicator of cc and can probably help prevent serious complications from developing. I don't know if that is worth all the itching though.

0

Share this post


Link to post
Share on other sites

I guess my basic question is why would the DH show up now that I am gluten free. I am very careful about my diet and everything that has gluten. My blood work shows a pregression to my being gluten free and I am normal now for antibody response. I know the blood work can be wrong but it my case it has shown improvement which I would expect if I am doing the right things. I am a diagnosed Celiac by biopsy. I did not have many GI symptoms so I don't rely on them to tell me if I have made a mistake. If DH is more sensitive to gluten than GI symptoms you would think I would have noticed the DH before I went gluten free. I know there is a chance it isn't DH but I can't get a Dermatologist appointment until April. It sounds like the symptoms that people are describing on this site. I have thought about going to my regular doctor but am not sure she would recognise DH. Do people go on medicine for DH just to see if it works and then if it does they know it was DH?

0

Share this post


Link to post
Share on other sites




I guess my basic question is why would the DH show up now that I am gluten free. I am very careful about my diet and everything that has gluten. My blood work shows a pregression to my being gluten free and I am normal now for antibody response. I know the blood work can be wrong but it my case it has shown improvement which I would expect if I am doing the right things. I am a diagnosed Celiac by biopsy. I did not have many GI symptoms so I don't rely on them to tell me if I have made a mistake. If DH is more sensitive to gluten than GI symptoms you would think I would have noticed the DH before I went gluten free. I know there is a chance it isn't DH but I can't get a Dermatologist appointment until April. It sounds like the symptoms that people are describing on this site. I have thought about going to my regular doctor but am not sure she would recognise DH. Do people go on medicine for DH just to see if it works and then if it does they know it was DH?

as to your question " why would DH show up now that you are gluten free"

sorry I dont have an answer for you,, All i know is mine is GREATLY effected by how much iodine I consume.

DH is diagnosed by biopsy ,you need to see your dermatologist for that.

http://www.dermnet.com/Dermatitis-Herpetiformis/photos/1

this is a site that shows different pictures of diagnosed DH

** FYI ** I would not open with children in the room

0

Share this post


Link to post
Share on other sites

Thanks for your reply. I do think that taking out the vitamin with iodine has helped. Maybe that was what irritated it. I can't get a Dermatologist appointment until April. The site with pictures helped and that is why I do think I have DH but not as bad as the pictures. The spots that I do have look like the one ladies back but I don't have as many. Using Benadryl lotion seems to help at night. I have to have my husband put it on and he isn't too crazy about that. :)

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
      104,698
    • Total Posts
      921,787
  • Topics

  • Posts

    • When it's that high, it almost always means Celiac.  Sure, you can have Crohns, too.  Just like you can have Celiac and diabetes, the common cold or a hang nail.  I wouldn't jump to Chrohns.  I don't think the tTg really has anything to do with Chrohns?  Where did you see that?  Sometimes, a slightly elevate tTg can be elevated from other issues, but >100 is not a " slightly elevated" reading
    • Hi! I'm new here, and I'm looking for some information because I'm having a hard time finding it.  Over Labor Day weekend I got some kind of intestinal bug. I didn't think much of it until the D persisted once a day up til now. I tried a priobiotic but that didn't help much. I have bad anxiety and began to think that I was just anxious and stressed. No fever, no pain, all bloodwork is normal, so no infection or anemia. My mother has 5 siblings and 3 have celiac. One other one had a high result on a blood test but was never officially diagnosed and insists she doesn't have it. So I went to my local health fair and got the ttg-iga test, just in case. My result came back at >100. So I have called and scheduled a visit with a GI for next week. Aside from the recent intestinal issues I have never thought that I had any signs of celiac. I do have dermatographism and have had that since I was 20 (I am 28). I have severe anxiety. I had PUPPPS when I was pregnant with my daughter and it was miserable. It looks much like the skin rashes that celiacs have. Again, didn't think much of it. Because of my anxiety I am terrified that this high blood test is from something else, like crohn's. I don't have diabetes, my liver and thyroid numbers are fine. I think it's much more plausible that this is celiac because of my family history. But my anxiety says "what if it's crohns?" Does anyone have any insight? Is it true that the ttg iga can be elevated from crohns and not celiac? Is >100 pretty definitive of celiac? I didn't know if crohns was the cause if the number would be this high.  I'm just freaked out. 
    • This does say it is for NCGS....so not  for Celiacs.  There is a drug being developed that may actually break down the gluten in the stomach before it hits the intestines.  However, that is still in clinical trials.
    • could be from your neck, or it is, literally, in your head. perhaps a scan is needed.
    • The anxiety thing is there I take teas, and supplements along with CBD oil to help with it, and long walks and exercise when I get antsy. As for the human interaction it is a mix of other mental issues, and the way I feel about people who can eat gluten. If they are not eating I have no issue talking with people. I mentioned I have issues accepting them as the same species when I see them eating. My reaction to gluten is so ingrained in me that it is not a food but a poison, that watching others eat it causes a subconscious reaction where I find myself avoiding them and looking down on them like something from another planet. I end up disgusted with them and walking away, I will go out of my way to avoid people and places where foods like this are present. This is my TRAUMA part of the gluten exposure, and one of the big things I am trying to address in my life right now. I know it is irrational to do so but I end up doing it, I have never cared about others race, religion, or looks, but if I see them eating a gluten/poison, it somehow changes how I perceive them and interact with them and I hate this part about me. It is taking a lot of mental effort to try to smile and treat them as a human, and not something to be looked down upon in disgust. I just recall that mental state that gluten puts me in with my mind and body turning against me and not doing what I will it and the fear comes back. This diet is pretty much like mine, I take Doctors best Magnesium powder in a tea that is actually brewed with st johns wort (never thought much of it) , I use Liquid Health Stress & Energy along with the Neurologic Support they have, twice-three times a day for B vitamins(along with a bunch of other supplements) . I can not digest meats or carbs well, meats it is a issue with breaking them down same with egg yolks, I literally just burp up the undigested meats hours later. I have found the only way to eat them is to boil/slow cook them til they melt then blend them into a broth and have it with digestive enzymes so only do it with turkey bacon, longhorn, and salmon in small amounts in soups or for flavoring stock for stir frys.  As for Carbs like rice and potatoes I end up getting really gassy and bloated, same with sugars in any amount greater then like the size of my thumb give or take. Oats I only have gluten-free Harvest in about a tbsp amount when tasting recipes of stuff I sell at farmers markets. So I eat mostly fats and protein from egg whites, nuts, seeds, veggies, and vegan protein powders blends balanced for complete proteins. I have at least 1-2 dried fig, dates, handful of banana chips, or a 1/4 of a small fruit with meals for fruits.  My meals are mostly egg white and veggie omelettes, stir frys, and soups, Always with lots of fats and proteins in each meal. I have found having nutritional yeast to help with my mood and energy levels also and find someway of having it in meals often. I keep my foods on rotation and keep getting updated feed back on ratios with my dietician. I also have a rather odd list of foods I can not eat due to allergies/intolerance.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,704
    • Most Online
      3,093

    Newest Member
    Fbmb
    Joined