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

Dh And Forum Frequency

Di2011

By Di2011
in Dermatitis Herpetiformis

Recommended Posts

Di2011 Enthusiast
Di2011
Posted

I just started to wonder tonight about how much we DH sufferers spend cruising this forum. May be just my imagination but are we really the crazy forum members? Is it really so long to get it out of our system (skin) that we seem to be around, and so regularly, that we appear so regularly and longer term?

To be honest I thought back in June that I'd be temporary here on the forum. I'm not diagnosed celiac or officially DH, never likely to be. My unmistakable DH has me returning regularly to this forum and often at night (Australian time). I find the night time hard with the itching getting worse mid-afternoon and thereafter. Being a single mum I find this time of day/night hard (son in bed and now well past 9pm and itching like crazy). I sit here with cold/ice packs to calm my arms and hoping that this my last and final bad patch.

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

Celiac.com Sponsor (A8-M):


Di2011 Enthusiast
Di2011
Posted
  • Author

and seemingly so few DH diagnosed members on this forum?

ravenwoodglass Mentor
ravenwoodglass
Posted

I just started to wonder tonight about how much we DH sufferers spend cruising this forum. May be just my imagination but are we really the crazy forum members? Is it really so long to get it out of our system (skin) that we seem to be around, and so regularly, that we appear so regularly and longer term?

Many will be on the forum until they are feeling better and have a good understanding of what is going on and how to protect themselves. Others remain, sometimes for years, to help others and give support. It doesn't mean they are still suffering greatly.

I had DH since childhood but haven't had an outbreak now in years even though I have been glutened a couple times in just the last year or so. Still being active on the forum kind of gives a purpose for all the years of suffering. I stay because I don't want others to go through all the difficulty I did. I didn't find this forum until a couple years post diagnosis. I wish I had know of celiac. com when I was new as there is a fantastic group of 'oldtimers' here that help those who are struggling with diagnosis and all we have to go through afterwards.

I hope it won't be too long before your outbreaks are a thing of the past. When that time comes if you move on that is fine. You are also welcome to stay and help others if that is what you feel the need to do.

Di2011 Enthusiast
Di2011
Posted
  • Author

Can't thank you "oldtimers" enough, ravenwoodglass. Doesn't matter what condition you are in you are always here to help. This has certainly been my place of sanity and you all know SO much!! I hope I stick around too because I wonder how many people are out there in the wilderness and really need to find this forum.

squirmingitch Veteran
squirmingitch
Posted

Can't thank you "oldtimers" enough, ravenwoodglass. Doesn't matter what condition you are in you are always here to help. This has certainly been my place of sanity and you all know SO much!! I hope I stick around too because I wonder how many people are out there in the wilderness and really need to find this forum.

I will add my thanks also. As well as saying I hope to stick around too for the same reasons expressed above.

I sit here now having thought I was gluten free from at least Nov. 1st but Thanksgiving night my hubby discovered I had missed spotting gluten in a food we had been eating. That was a major low point for me. Like taking a giant step backwards. And I had gone iodine free for 3 weeks to boot. I feel like all my efforts were wasted & for naught. So now I've begun the count over again at Dec. 1st as I'm allowing the leeway from Thanksgiving to the 1st. Besides, it's easier to remember the 1st. When the 30th rolls around I will (hopefully) be able to say I have 30 days under my belt. It's like spending time in prison. So Thanksgiving night I began getting new outbreaks & they continued to multiply. Then they stopped coming. A few days & I thought I would just have to suffer the present ones until they had run their course. Then I wake up 3 mornings ago with it starting on my lower back again. Then 2 days with no new. This afternoon a blister formed on the back of each leg behind the knee. I'm so weary. When will it end?

pricklypear1971 Community Regular
pricklypear1971
Posted

Eventually it will improve. I'm sorry it's so rough right now. It can take a while for the iga to lower in your skin. Everyone is different.

Figuring out food ingredients is hard... I noticed I started picking up "favorites" the other day at the store - stuff that has been "safe" and I wasnt checking labels. That's a recipe for disaster and I know eventually that will get me if I continue. It's just so tiring rereading labels and it takes SO LONG. I swear I don't eat stuff simply so I don't have to read the label...

mushroom Proficient
mushroom
Posted

I am usually hear to commiserate wih the nighttime stragglers, but even I go to bed before you do :P:rolleyes:

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

Celiac.com Sponsor (A8-M):


squirmingitch Veteran
squirmingitch
Posted

Thank you both. I know I just have to grit it out. The eating part wouldn't be so bad if it weren't for the torture of dh. Pricklypear --- i know what you mean about not eating stuff simply for not wanting to read labels and you've been at it a lot longer than I.

I also feel like I have put my hubby in prison. He still eats gluten but is trying very hard to be cognizant of what I can eat (or can't eat)& tries to plan meals & I'm sick of saying, "I can't eat that, I can't eat that, I can't eat that". So he will change the menu so we can eat the same things but I swear I wish he would just eat his way & leave me alone & I could eat what I CAN eat. I think it would be easier that way. Or maybe it's just that I would feel less guilty that way.

Mushroom, I read your list under your sig. line & simply can not fathom WHAT you manage to eat --- how you feed yourself --- no caffeine, no soy, no legumes, no potatoes, no tomatoes, no citrus, no corn. How in the world do you survive?

Di2011 Enthusiast
Di2011
Posted
  • Author

Hi squirmingitch,

This afternoon a blister formed on the back of each leg behind the knee. I'm so weary. When will it end?

It will end for you!! Just keep getting on here for reassurance whenever you need. For me to get any real improvement I have learnt to mistrust any food I don't see prepared or prepared myself. Against my introverted nature, I've had to learn how to be very overt with people. When someone tells me I should be able to eat a 'little bit' I tell them "no, I can't eat a little bit". When someone tells me 'it can't be wheat or gluten because it is taking so long to heal when you've been so strictly gluten-free so long' I tell them 'yes it is and it may be another 6-12 months before it is completely healed'. I am no longer afraid to flash my upper arms (and it aint pretty :o ) at people who think they know better. I've been trying to toughen myself up about it all but still have lots of down times. I try to remind myself just how lucky I am that I don't have the very serious and life-threatening conditions others have.

I still find it weird how it appears on both left & right at the same time :blink:

Maybe not the same for everyone? But mine appeared on my both ankles first, then went all the way north and then down my arms to my hands always left and right at the same time.

mushroom Proficient
mushroom
Posted

Mushroom, I read your list under your sig. line & simply can not fathom WHAT you manage to eat --- how you feed yourself --- no caffeine, no soy, no legumes, no potatoes, no tomatoes, no citrus, no corn. How in the world do you survive?

The only time it is a problem is when someone else tries to cook for me (other than hub and big sis) :rolleyes: Apart from that I eat lots of yummy foods. (just finished a bagel and cream cheese). :)

ravenwoodglass Mentor
ravenwoodglass
Posted

I still find it weird how it appears on both left & right at the same time :blink:

Maybe not the same for everyone? But mine appeared on my both ankles first, then went all the way north and then down my arms to my hands always left and right at the same time.

That is one of the hallmarks of DH although there are some folks who may only get lesions on one side of their body it is usually bilateral.

squirmingitch Veteran
squirmingitch
Posted

The only time it is a problem is when someone else tries to cook for me (other than hub and big sis) :rolleyes: Apart from that I eat lots of yummy foods. (just finished a bagel and cream cheese). :)

Ohhhhhh that sounds Gooooooood! So do you think you can now tolerate lactose because your villi have had time to heal? I'm not doing dairy myself right now --- only egg whites & I am hoping once my gut has time to heal that I will be able to go back to it. Milk has always been my very favorite food. Even as a kid when everyone else wanted a soda I wanted MILK! Also, do you mind telling me what brand of bagel you eat? You don't do soy & that's another thing I'm not doing now as I found it to cause bloat. So apparently you have found a soy free gluten-free bagel.

mushroom Proficient
mushroom
Posted

Ohhhhhh that sounds Gooooooood! So do you think you can now tolerate lactose because your villi have had time to heal? I'm not doing dairy myself right now --- only egg whites & I am hoping once my gut has time to heal that I will be able to go back to it. Milk has always been my very favorite food. Even as a kid when everyone else wanted a soda I wanted MILK! Also, do you mind telling me what brand of bagel you eat? You don't do soy & that's another thing I'm not doing now as I found it to cause bloat. So apparently you have found a soy free gluten-free bagel.

Well, number one, I am currently resident in New Zealand so our products are different. This is actually listed as a toasting BAP, (no hole in the middle) and is a bit more bready than a bagel, but works well anyway. Not only no soy but no potato starch either.

Yes, I do feel that my lactose tolerance is due to a healed gut; however, I was always able to tolerate yogurt, hard cheeses, sour cream, any cultured lactose product because the enzymes and cultures digest most of the lactose. I just had to avoid milk, cream, ice cream and frozen yogurt. By the way, eggs are not dairy :D - they are a separate protein and allergen all on their own. :) Fortunately I do eat them.

I think gluten free would be pretty easy without all the other "frees" that came up :) Try to find a corn-free menu or a legume-free menu :lol:

squirmingitch Veteran
squirmingitch
Posted

Well, actually I am corn free but not because I want to be nor because I have reason to believe I have a problem with corn. I love grits, another of my traditional comfort foods. I like tacos, cornbread. But I have not been eating them as I have not found anything in that arena yet which is processed in a gluten free facility & at this point in time I don't want to take ANY chances on CC. Things are complicated enough. I can be more experimental once I get this gluten-free down pat & the dh lays down --- I desperately need a break from it!

HOWEVER --- I wouldn't touch trying to find a legume-free menu with a ten foot pole! And I applaud your ability to do so.

BTW, the no egg yolks is for iodine purposes.

And how does everyone seem to automatically know I'm in the US? I can't tell where any of you are unless you say something about your locale.

Archived

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

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


  • Member Statistics

    • Total Members
      131,594
    • Most Online (within 30 mins)
      7,748
    kathleenconley
    Newest Member
    kathleenconley
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Wheatwacked
      Potential celiac need advice

      By Wheatwacked · Posted

      Yes.  Now, if you hit your finger with a hammer once, wouldn't you do your best not to do it again?  You have identified a direct connection between gluten and pain.  Gluten is your hammer.  Now you have to decide if you need a medical diagnosis.  Some countries have aid benefits tgat you can get if you have the diagnosis, but you must continue eating a gluten-normal diet while pursuing the diagnosis. Otherwise the only reason to continue eating gluten is social. There are over 200 symptoms that could be a result of celiac disease.. Celiac Disease and Non Celiac Gluten Sensitivity  both cause multiple vitamin and mineral deficiency.  Dealing with that should help your recovery, even while eating gluten.  Phosphatidyl Choline supplements can help your gut if digesting fats is a problem,  Consider that any medications you take could be causing some of the symptoms, aside from gluten.        
    • trents
      Potential celiac need advice

      By trents · Posted

      Welcome to the forum, @Ben98! If you have been consciously or unconsciously avoiding gluten because of the discomfort it produces then it is likely that your blood antibody testing for celiac disease has been rendered invalid. Valid testing requires regular consumption of generous amounts of gluten. The other strong possibility is that you have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms with celiac disease but does not have the autoimmune component and thus does not damage the small bowel lining. It is 10x mor common than celiac disease. There is currently no test for NCGS. Celiac disease must first be ruled out. Some experts in the field believe it can be a precursor to the development of celiac disease. Having one or both of the primary genes for developing celiac disease does not imply that you will develop active celiac disease. It simply establishes the potential for it. About 40% of the population has the genetic potential but only about 1% develop active celiac disease. 
    • Ben98
      Potential celiac need advice

      By Ben98 · Posted

      TTG blood test and total IGA tested on many occasions which have always remained normal, upper GI pain under my ribs since 2022. I had an endoscopy in 2023 which showed moderate gastritis. no biopsy’s were taken unfortunately. genetic test was positive for HLADQ2. extreme bloating after eating gluten, it’ll feel like I’ve got bricks in my stomach so uncomfortably full. the pain is like a dull ache under the upper left almost like a stitch feeling after a long walk. I am just wanting some advice has anyone here experienced gastritis with a gluten issue before? thank you  
    • Wheatwacked
      Unusual bright yellow but odourless discharge

      By Wheatwacked · Posted

      "Conclusions: The urinary iodine level was significantly lower in women with postmenopausal osteoporosis, and iodine replacement may be important in preventing osteoporosis"  Body iodine status in women with postmenopausal osteoporosis Low iodine can cause thyroid problems, but Iodine deficiency will not show up in thyroid tests.  Iodine is important for healing, its job is to kill off defective and aging cells (Apoptosis). Skin, brain fog, nails, muscle tone all inproved when I started taking 600 mcg (RDA 150 - 1000 mcg) of Liquid Iodine drops. Some with dermatitis herpetiformis, Iodine exacerbates the rash.  I started at 1 drop (50 mcg) and worked up to 12 drops, but I don't have dermatitis herpetiformis.
    • cristiana
      How long does it take to gain weight?

      By cristiana · Posted

      That's great news, you can do this.  Let us know how things go and don't hesitate to ask if you have any more questions. Cristiana 😊
×
×
  • 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.