Jump to content
  • You are not alone. Join Celiac.com for trusted gluten-free answers and forum support.



  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):

To Be Or Not To Be


KellieLA

Recommended Posts

KellieLA Newbie

For years maybe 10 I have suffered from hard red painful lumps that flared up in my hands (particularly all the way up my fingers) I've gone back and forth to my doctor who has been understanding but tested me for a range of auto immune disorders. At first ge thought Lupus, yet test after test came back negative. I then suffered in silence not thinking I would ever find out why these flare up occurred. I've search uni data bases, pictures and finally found a picture of a member with very similar hands to mine. I had lumps in identical areas only mine never reach the blistering stage. They can take a week ie more to go away but always return without warning.

I get red lumps/nodules that flare up from under the skin and can cause me so much pain I cannot turn a key. They become itchy but funny enough, never blister as described. This week has been the worst in 10 years. They are all over my hands and gave areas to my elbows. They look like warts only red or insect bites, however they are not.

The tissue is very inflamed a sore. All the rashes I find are Very typical "rashes" not red inflamed lumps or nodules like I get all over my hands abd now elbows. this is what has been so off putting and why I virtually gave up.

I've always suspected I may be intolerant to gluten having cramping, boosting, flatulence and very irregular bowel motions which I was told was IBS. My hair thinned 8 years ago and the more I read the more I suspect this could ve something of a bigger picture. Having the lumps biopsied on Wednesday off my elbow so fingers crossed I get some kind of answer.


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



Celiac.com Sponsor (A8-M):



itchy Rookie

I don't have an opinion about whether your skin condition is DH, or not. But there are a lot of skin conditions that seem to clear up with a gluten free diet.

But with those bowel symptoms one would certainly think that you might be coeliac.

Going strictly gluten free for a while might give you a clear indication of whether you are coeliac. Eating gluten free isn't so hard, and doesn't have to be expensive.

In my experience the GI symptoms went away completely after attaining a strict gluten free diet, and the DH symptoms have been improving steadily over 2 1/2 years.

Skylark Collaborator

Good luck! I hope you get some answers.

Make sure you do some reading on the biopsy. My understanding from other folks on the board is that a DH biopsy is supposed to be right next to the damaged skin, not a direct biopsy of the blister or lump.

Avalon451 Apprentice

My 16 y.o. daughter's DH was diagnosed literally as an aside, while she was visiting her dermatologist for acne. The doctor had stood up and was heading for the door, when she said, "Oh, yeah, we were going to ask you about this rash I have on my elbows and knees..." She thought it was dry skin from cold winters where she was attending school. But it got worse over the summer and spread around to her back, face, butt, etc.

The doc biopsied first off her elbow, but that lesion was healing and the biopsy was inconclusive. Apparently it needs to be a new lesion. Her second biopsy was done right, where the doc biopsied on a fresh lesion on her back, and then another just a fraction of an inch away on clear skin. That turned up the accurate DH diagnosis. Then we were referred to a GI doc who ran the blood tests (WAYYY positive) and did an endoscopy to check for intestinal damage.

I hope you get some relief soon! We have been gluten-free for just one week, and my daughter's not feeling incredibly better, but she doesn't have any new outbreaks, and her acne is already clearing up!

weaselfish Rookie

For years maybe 10 I have suffered from hard red painful lumps that flared up in my hands (particularly all the way up my fingers) I've gone back and forth to my doctor who has been understanding but tested me for a range of auto immune disorders. At first ge thought Lupus, yet test after test came back negative. I then suffered in silence not thinking I would ever find out why these flare up occurred. I've search uni data bases, pictures and finally found a picture of a member with very similar hands to mine. I had lumps in identical areas only mine never reach the blistering stage. They can take a week ie more to go away but always return without warning.

I get red lumps/nodules that flare up from under the skin and can cause me so much pain I cannot turn a key. They become itchy but funny enough, never blister as described. This week has been the worst in 10 years. They are all over my hands and gave areas to my elbows. They look like warts only red or insect bites, however they are not.

The tissue is very inflamed a sore. All the rashes I find are Very typical "rashes" not red inflamed lumps or nodules like I get all over my hands abd now elbows. this is what has been so off putting and why I virtually gave up.

I've always suspected I may be intolerant to gluten having cramping, boosting, flatulence and very irregular bowel motions which I was told was IBS. My hair thinned 8 years ago and the more I read the more I suspect this could ve something of a bigger picture. Having the lumps biopsied on Wednesday off my elbow so fingers crossed I get some kind of answer.

Hello KellieLA,

As you most likely surmise, if you don't consume ANY gluten, and the lumps ( yup, I've had 'em, very strange ) subside, well, it's fairly obvious what the source of the problem is, no ???

Remember that no-one will EVER know YOU better than YOU !!!

I had flatulence prior to going gluten-free, but no longer.

We are being poisoned daily on many levels so must be vigilant with what we consume.

Hope you can determine the trigger for you !!!!!

WF

Archived

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

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

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - cristiana replied to HelloFlowersGoodbyeFlour's topic in Related Issues & Disorders
      6

      Anyone else get a lot of upper respiratory infections?

    2. - HelloFlowersGoodbyeFlour replied to HelloFlowersGoodbyeFlour's topic in Related Issues & Disorders
      6

      Anyone else get a lot of upper respiratory infections?

    3. - HelloFlowersGoodbyeFlour replied to HelloFlowersGoodbyeFlour's topic in Related Issues & Disorders
      6

      Anyone else get a lot of upper respiratory infections?

    4. - cristiana replied to HelloFlowersGoodbyeFlour's topic in Related Issues & Disorders
      6

      Anyone else get a lot of upper respiratory infections?

    5. - trents replied to HelloFlowersGoodbyeFlour's topic in Related Issues & Disorders
      6

      Anyone else get a lot of upper respiratory infections?

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

    • Total Members
      134,125
    • Most Online (within 30 mins)
      10,442

    psasso76
    Newest Member
    psasso76
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • cristiana
      Definitely worth speaking to your gastroenterologist about this. My own told me that by using Gaviscon a barrier forms over the contents of the stomach and stops gas and acid irritating the throat.  In fact, he said to me that because I found relief using Gaviscon that was a very clear indicator that reflux was the cause of that particular issue.   A wedge pillow will really help with this - or raising the top bed legs with bricks.
    • HelloFlowersGoodbyeFlour
      I did get the pneumonia vaccine about 4 years ago. I had this amazing allergist who did all those vitamin deficiencies test and told to get that vaccine. Unfortunately she retired.  I haven’t been to an allergist in a few years,  I’m not sure what my levels are now. I did have a pulmonologist who wasn’t concern and said I seemed fine to him that I was young etc. But yes I think I should at the very least get a different opinion. Thank you for your reply 
    • HelloFlowersGoodbyeFlour
      Yes I do have acid reflux. I’m not on anything for it at the moment. I sometimes wonder if that’s what it could be because I get heart burn every night. I may revisit my gastrointestinal doctor again. Thanks for the reply  
    • cristiana
      Hi @HelloFlowersGoodbyeFlour I wonder if you suffer from reflux, as if you do, you may find it could also be irritating your airways.  I shall explain: I have to use a blue inhaler from time to time, and it seems to be related to reflux.  Never had any trouble before my coeliac diagnosis, the reflux seemed to be something that developed following a holiday to France in 2019, where I had been exposed to gluten.    The reflux continued into the autumn and winter, my throat itched to begin with, particularly after meals, but it then that feeling of irritation seemed to spread to my lungs.  I even found it difficult to breathe on occasion. What stopped it in its tracks was using a wedge pillow at night, following a reflux diet (you can find them online), not eating 2-4 hours before bed and also having a dose of Gaviscon Advanced at night, which forms a barrier so that acid/food can't go back up your esophagus.  The throat irritation faded, and then I found it easier to breathe again. Just mentioning in case it could be a contributing factor.
    • trents
      Since initially getting your D checked a few years ago, has it since rebounded to normal levels? Sounds like at some point you got it checked again.
×
×
  • Create New...