Jump to content
  • 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 Our Content
    eNewsletter
    Donate

Is Dh Related To More Than Gluten Sensitivity?


ellen123

Recommended Posts

ellen123 Apprentice

Hey out there,

I've read a lot on this forum about DH and gluten but I'm hoping someone knows the answer to this without my having to go hunting through the threads and articles. Is DH also a symptom of other food sensitivities (like casein, soy, nightshades, etc.)? Also, is there one really good article I can read that'll give me a better understanding of DH? I've seen various people's comments and advice about how to cope with it and I've read some explanations about why so many of us keep getting outreaks (such as that it takes up to 2 years for the IgA antibodies to leave the body, or the skin), but I would love to know the source of that information. I'm also wondering whether there's anything else going on, some other food sensitivy that may be slowing my progress. Since I don't suffer from any overt GI symptoms that so many others here have (mine are mainly neurological-pain related, plus the DH), I haven't been strongly motivated to give up anything other than gluten at this point. (I realize I must have some level of GI damage -- I'm just lucky enough not to have those symptoms.) But I continue to wonder whether maybe I need to try eliminating other things, or whether I should just sit tight and keep trying to improve my game being gluten-free, since overall I'm doing much better, despite minor setbacks each week.

By the way, I think I know why my DH has flared up so badly this week. Last night (as I was scratching) I was reading on the DH forum about how iodine seems to exacerbate DH symptoms, and I was so happy with myself for knowing enough not to use iodized salt in the house. I even confirmed that the big container of salt in my cabinet says it's not iodized. Then today while I was cooking, I casually picked up the salt container next the the stove that I've been using all month, every day -- this sea salt that my husband had been using while he was in France -- and realized the label said "Iode" (iodized)! What a jerk I am! So that explains this week's foolishness. But I'm still wondering whether other things may be causing it too. I'd appreciate any advice.

Ellen


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



dhd2000 Newbie

I would bet it's the iodine that's been bothering you. I am pretty sensitive to that as well. And if you are still using advil or ibuprofin, giving that up can help quite a bit. I do think other things can cause dh outbreaks, maybe not forever, but at least while you're still healing. I gave up maltodextrin, (which I think is a powdered corn product) and high fructose corn syrup and that helped as well. I think maybe anything that is hard on your stomach, or hard to digest, like corn, can cause the flare-ups for awhile. It's hard to keep cutting things out of your diet, I know!

I've used this site for good DH info: Open Original Shared Link

Dee

Hey out there,

I've read a lot on this forum about DH and gluten but I'm hoping someone knows the answer to this without my having to go hunting through the threads and articles. Is DH also a symptom of other food sensitivities (like casein, soy, nightshades, etc.)? Also, is there one really good article I can read that'll give me a better understanding of DH? I've seen various people's comments and advice about how to cope with it and I've read some explanations about why so many of us keep getting outreaks (such as that it takes up to 2 years for the IgA antibodies to leave the body, or the skin), but I would love to know the source of that information. I'm also wondering whether there's anything else going on, some other food sensitivy that may be slowing my progress. Since I don't suffer from any overt GI symptoms that so many others here have (mine are mainly neurological-pain related, plus the DH), I haven't been strongly motivated to give up anything other than gluten at this point. (I realize I must have some level of GI damage -- I'm just lucky enough not to have those symptoms.) But I continue to wonder whether maybe I need to try eliminating other things, or whether I should just sit tight and keep trying to improve my game being gluten-free, since overall I'm doing much better, despite minor setbacks each week.

By the way, I think I know why my DH has flared up so badly this week. Last night (as I was scratching) I was reading on the DH forum about how iodine seems to exacerbate DH symptoms, and I was so happy with myself for knowing enough not to use iodized salt in the house. I even confirmed that the big container of salt in my cabinet says it's not iodized. Then today while I was cooking, I casually picked up the salt container next the the stove that I've been using all month, every day -- this sea salt that my husband had been using while he was in France -- and realized the label said "Iode" (iodized)! What a jerk I am! So that explains this week's foolishness. But I'm still wondering whether other things may be causing it too. I'd appreciate any advice.

Ellen

ellen123 Apprentice
And if you are still using advil or ibuprofin, giving that up can help quite a bit.

Dee

Thanks, Dee. I'll definitely switch from ibuprofen to something else, because I have taken it (Advil, in fact) at least 2 or 3 times in the past month for neckaches-headaches. So maybe that's increased the itching, as well as the iodine. Thanks also for the link; I'll check out the article.

Ellen

RoseTapper Newbie

I vote for the iodine! While gluten must be present to have a DH attack, iodine serves as the "trigger." This information can be found in Dr. Peter Green's book, "Celiac Disease: The Hidden Epidemic." If you want an excellent resource on celiac disease and gluten sensitivity, this book is outstanding. Dr. Green discusses DH, as well, and I would highly recommend this book for anyone with celiac and DH.

Alona Newbie

Not disagreeing with the iodine part, but I've also read that some poor patients also have to eliminate dairy for full results. I hope that's not the case, as dairy is one of my favorite foods, as I'm sure it is for many others. *Thinks about sour cream on tacos and gets hungry*

lovegrov Collaborator

Gluten and iodine are the only dietary items I've ever heard of that can trigger DH. And the iodine shouldn't be a problem after you clear your body of the Iga deposits. I don't worry about iodine and I haven't had a DH attack in years.

richard

dadoffiveboys Rookie
Gluten and iodine are the only dietary items I've ever heard of that can trigger DH. And the iodine shouldn't be a problem after you clear your body of the Iga deposits. I don't worry about iodine and I haven't had a DH attack in years.

richard

My DH is also triggered by Casein. Although I'm not sure if this is a 'cross-reaction' and mimicry so it's really Gluten but my body confuses it. Since I am gluten-free/CF though I am completely DH free. I did a test recently to confirm I can't have any dairy at all (NOT DOING THAT AGAIN) where I tried a 4oz yogurt. It made me sick for a week (or so) and I had 5 DH bumps. Not so sick I couldn't do anything but sick enough to never try that again. I can't even handle cross-contamination from gluten without getting a DH bump. If a product is 'legally gluten-free' by some definitions companies use (<20ppm) I STILL can't have it w/o bumps.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



  • 2 weeks later...
Austin C Newbie

I am a parent of a 4 year old with DH. We have known of this for only 5 months. Does anyone know about how long after gluten is eaten that you will recognize DH bumps? My son is in pre-school and I pack his own lunch's and snacks, but I cannot watch him or prevent his eating something with gluten in it all the time. I know that we do not give him anything with gluten in it, so I was wondering if I would be able to track the person or persons that might not be watching what they are giving him and be able to help them to know the right things.

psipsina Rookie
I would bet it's the iodine that's been bothering you. I am pretty sensitive to that as well. And if you are still using advil or ibuprofin, giving that up can help quite a bit. I do think other things can cause dh outbreaks, maybe not forever, but at least while you're still healing. I gave up maltodextrin, (which I think is a powdered corn product) and high fructose corn syrup and that helped as well. I think maybe anything that is hard on your stomach, or hard to digest, like corn, can cause the flare-ups for awhile. It's hard to keep cutting things out of your diet, I know!

I've used this site for good DH info: Open Original Shared Link

Dee

Would you mind elaborating on why no advil or ibuprofen? I'm pretty sure I have DH though I haven't had a skin biopsy. I got glutened by accident (just figured out that it was the reeses eggs I had during easter) and had a MRI with iodine contrast in the same week and got itchy red raised bumps all over my legs focused around pressure points. I have never had this reaction to being glutened so I think it was the combo of iodine+gluten that really caused it. I already don't use iodized table salt but want to make sure I avoid anything that might flare this back up as it was miserable! Thanks.

solange Newbie

I had to give up dairy to get rid of DH, and there is a miracle recipe to get DH back: three days after eating dairy, it is back like a charm. A friend of mine who isn't gluten intolerant claims the same thing happens to her.

nora-n Rookie

About how long it takes before the bumps show up, I read this can be any time from very soon to a few weeks, making tracking down glutening/ iodine really difficult and confusing.

Also, I keep reading ibuprofen (NSAIDS) are not good when one has celiac or DH or neuro symptoms from gluten or IBD.

I can feel my gut gets leaky from NSAIDS or glutening. taking potassium somewhat makes it better, I guess it is just replacing some potassium I lose. Otherwise I crawl on the skin and have to kick the wall as my feet crawl and feel like spasms.

I cannot have milk or traces of milk either.

nora

dhd2000 Newbie
Would you mind elaborating on why no advil or ibuprofen? I'm pretty sure I have DH though I haven't had a skin biopsy. I got glutened by accident (just figured out that it was the reeses eggs I had during easter) and had a MRI with iodine contrast in the same week and got itchy red raised bumps all over my legs focused around pressure points. I have never had this reaction to being glutened so I think it was the combo of iodine+gluten that really caused it. I already don't use iodized table salt but want to make sure I avoid anything that might flare this back up as it was miserable! Thanks.

I know from personal experience that advil can cause DH outbreaks on me. It seems like it's related to inflammation somehow. Read this: Open Original Shared Link

That site has tons of good DH info in the Ask the experts section.

ellen123 Apprentice

I tried a good homeopathic alternative to ibuprofen: an anti-inflammatory remedy called Traumeel. It's recommended for muscular pain, sports injuries, bruising, stuff like that. It actually seemed to help a lot when I pulled a muscle in my back. I don't know if would help for headaches, though, which is the other reason I used to take ibuprofen fairly frequently.

Archived

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

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

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      how much gluten do I need to eat before blood tests?

    2. - trents replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      IBS-D vs Celiac

    3. - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      how much gluten do I need to eat before blood tests?

    4. - SilkieFairy posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      IBS-D vs Celiac

    5. - catnapt posted a topic in Related Issues & Disorders
      0

      anyone here diagnosed with a PARAthyroid disorder? (NOT the thyroid) the calcium controlling glands

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,321
    • Most Online (within 30 mins)
      7,748

    James Minton
    Newest Member
    James Minton
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • catnapt
      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
    • trents
      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
    • trents
      Under the circumstances, your decision to have the testing done on day 14 sounds very reasonable. But I think by now you know for certain that you either have celiac disease or NCGS and either way you absolutely need to eliminate gluten from your diet. I don't think you have to have an official diagnosis of celiac disease to leverage gluten free service in hospitals or institutional care and I'm guessing your physician would be willing to grant you a diagnosis of gluten sensitivity (NCGS) even if your celiac testing comes up negative. Also, you need to be aware that oats (even gluten free oats) is a common cross reactor in the celiac community. Oat protein (avenin) is similar to gluten. You might want to look at some other gluten free hot  breakfast cereal alternatives.
    • SilkieFairy
      After the birth of my daughter nearly 6 years ago, my stools changed. They became thin if they happened to be solid (which was rare) but most of the time it was Bristol #6 (very loose and 6-8x a day). I was on various medications and put it down to that. A few years later I went on this strict "fruit and meat" diet where I just ate meat, fruit, and squash vegetables. I noticed my stools were suddenly formed, if a bit narrow. I knew then that the diarrhea was probably food related not medication related. I tried following the fodmap diet but honestly it was just too complicated, I just lived with pooping 8x a day and wondering how I'd ever get and keep a job once my children were in school.  This past December I got my yearly bloodwork and my triglycerides were high. I looked into Dr. William Davis (wheat belly author) and he recommended going off wheat and other grains. This is the first time in my life I was reading labels to make sure there was no wheat. Within 2 weeks, not only were my stools formed and firm but I was only pooping twice a day, beautiful formed Bristol #4.  Dr. Davis allows some legumes, so I went ahead and added red lentils and beans. Nervous that the diarrhea would come back if I had IBS-D. Not only did it not come back, it just made my stools even bigger and beautiful. Still formed just with a lot more width and bulk. I've also been eating a lot of plant food like tofu, mushrooms, bell peppers, hummus etc which I thought was the cause of my diarrhea before and still, my stools are formed. In January I ran a genetics test because I knew you had to have the genes for celiac. The report came back with  DQ 2.2 plus other markers that I guess are necessary in order for it to be possible to have celiac. Apparently DQ 2.2 is the "rarer" kind but based on my report it's genetically possible for me to have celiac.  I know the next step is to bring gluten back so I can get testing but I am just not wanting to do that. After suffering with diarrhea for years I can't bring myself to do it right now. So that is where I am!   
    • catnapt
      learned I had a high PTH level in 2022 suspected to be due to low vit D  got my vit D level up a bit but still have high PTH   I am 70 yrs old (today in fact) I am looking for someone who also has hyperparathyroidism that might be caused by malabsorption    
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.