Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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 Celiac.com!
    eNewsletter
    Donate

Help Me Help My Doctor

lynn-123

By lynn-123
in Dermatitis Herpetiformis

Recommended Posts

lynn-123 Newbie
lynn-123
Posted

Hello all. I just registered here and am so grateful to have found such a huge source of information.

A little background. Over the past year my overall wellbeing has deteriorated little by little. Feelings of doom, just being tired and not feeling like myself. Off and on I've had itchy skin, but nothing drastic until about a month or so ago when I developed a blistery, EXTREMELY (can't emphasize that enough) rash on my left shin. I thought it was poison ivy but it never went away. A week ago a new rash just like it developed above my left elbow. Now I have vague feelings of itchiness on my face and scalp and right arm and leg. I feel like pins are sticking in me and then a little bump will come up that itches like crazy.

Meanwhile, my feelings of doom are turning into full-blown panic attacks. My blood pressure continues to get lower and my heart rate is getting slower. My doctor worked me in on Friday in the middle of a panic attack. From what I've read, this rash is DH and my panic goes right along with it. My doctor was very understanding and listened carefully, but told me the rash looked like eczema and started me on an antidepressant, which I really need at this point. She was willing to do a ton of blood work to ease my mind.

Lo and behold she called me FROM HOME today to tell me she was checking labs and was really shocked. My thyroid has quit working. I am thinking that this is all related and autoimmune. We talked for a bit and based on this she is now willing to test for Celiac, but she mentioned doing blood tests. Are there ANY blood tests that can diagnose this as Celiac (or DH -- I'm so new to this) or do I have to have a skin biopsy?

Also, is there anything specific I should ask for since she's willing to listen to me and do blood work?

I am miserable and wondering how bad this rash is gonna get before I get help. My dermatologist cannot see me until October.

If you are still reading, thank you. Help.

Lynn

Link to comment
Share on other sites
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


krawhitham Newbie
krawhitham
Posted

Lynn, I wish I could give you a hug!

I have not been dx with anything but suggested by a Dr that I have a food allergy as a result of my skin condition, and I can relate to the anxiety/panick attacks. I felt like I was going so crazy!

Very shortly after starting a 100% gluten-free diet my anxiety disappeared completely. Please make any efforts possible to go gluten-free, diagnosis or not! It won't hurt anything, and it just might help :)

Link to comment
Share on other sites
mushroom Proficient
mushroom
Posted
Hello all. I just registered here and am so grateful to have found such a huge source of information.

A little background. Over the past year my overall wellbeing has deteriorated little by little. Feelings of doom, just being tired and not feeling like myself. Off and on I've had itchy skin, but nothing drastic until about a month or so ago when I developed a blistery, EXTREMELY (can't emphasize that enough) rash on my left shin. I thought it was poison ivy but it never went away. A week ago a new rash just like it developed above my left elbow. Now I have vague feelings of itchiness on my face and scalp and right arm and leg. I feel like pins are sticking in me and then a little bump will come up that itches like crazy.

Meanwhile, my feelings of doom are turning into full-blown panic attacks. My blood pressure continues to get lower and my heart rate is getting slower. My doctor worked me in on Friday in the middle of a panic attack. From what I've read, this rash is DH and my panic goes right along with it. My doctor was very understanding and listened carefully, but told me the rash looked like eczema and started me on an antidepressant, which I really need at this point. She was willing to do a ton of blood work to ease my mind.

Lo and behold she called me FROM HOME today to tell me she was checking labs and was really shocked. My thyroid has quit working. I am thinking that this is all related and autoimmune. We talked for a bit and based on this she is now willing to test for Celiac, but she mentioned doing blood tests. Are there ANY blood tests that can diagnose this as Celiac (or DH -- I'm so new to this) or do I have to have a skin biopsy?

Also, is there anything specific I should ask for since she's willing to listen to me and do blood work?

I am miserable and wondering how bad this rash is gonna get before I get help. My dermatologist cannot see me until October.

If you are still reading, thank you. Help.

Lynn

Hi Lynn, and welcome to the forum.

My goodness, you are having a really tough time, but I think you are on the right track and have a good doc.

Yes, there is a full celiac panel of blood tests; make sure she does total IGA as well as the others because if you are IGA deficient it invalidates the other tests. Usually if the blood work is positive your doctor will refer you to a GI for an endoscopy to take biopsies of your small intestine looking for gluten damage

Thyroid problems are a pretty normal autoimmune companion of celiac, but usually not to the extreme of quit functioning; no wonder you have been feeling so bad.

Yes, there are additional blood tests that should be done, for Vitamins D, B12, and folate, minimum; also tests for iron deficiency. All these are common in celiac persons. You will probably also need to start taking a mega B complex supplement and a multilmineral, because your body will not have been absorbing the proper nutrients.

Yes, DH should be biopsied, while the lesion is active, taking the sample from the skin immediately adjacent to the lesion, not from the lesion itself. It is important that the lesion be active. See if your doctor can get you in sooner, because a diagnosis of DH is definitive for celiac disease.

As soon as all your testing is complete you should stop eating gluten regardless of the results because you do sound like you have celiac and should not eat gluten, so a gluten-free trial would be in order even if your testing is negative.

Good luck to you and {{{{hugs}}}}. Hopefully things will get much better very soon.

Link to comment
Share on other sites
lynn-123 Newbie
lynn-123
  • Author
Posted

Thank you for your kind replies. And thank you for the guidelines of what to ask for and to do. My doctor was wise enough to go ahead and draw a B12 on Friday. That came back at 452, which they said is normal (range 123 - 730). I don't have any signs of anemia on blood work.

I had a celiac panel drawn this morning, not sure if she got total IgA, but the doctor called me in as labs-only and my blood was drawn and I left. Didn't get to see her like I thought I would. However, my dermatologist has agreed to work me in in just one week, so that's good, and I think whatever is lacking in current blood work she can do.

Will be glad to get some answers for this.

Lynn

Link to comment
Share on other sites

Archived

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

Go to topic listing

  • 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. plumbago
      - plumbago replied to Suzi374's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Lots of tests

      I'm also a nurse, but one who has worked in chronic care, and to some extent, it is more satisfying to see patients through to a diagnosis (as opposed to working in the ED), but an accurate diagnosis does not occur not as often as it should! Your posting presents a lot of information. But a couple of things I can respond to. One, celiac disease is diagnosed...
    2. trents
      - trents replied to Suzi374's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Lots of tests

      Was a biopsy done when you had your gastroscopy? Concerning your anemia, are you B12 deficient? It's nearly impossible to get sufficient B12 if you are a vegetarian unless you take supplements.
    3. Suzi374
      - Suzi374 replied to Suzi374's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Lots of tests

      And I’m anaemic, however I’m also female and vegetarian. I had an iron trans a couple of years ago however it’s starting to dwindle and taking supplements doesn’t seem to work. I can’t seem to absorb it.
    4. Suzi374
      - Suzi374 posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Lots of tests

      Hi, I attended a neurologist appt last Tuesday, which I nearly cancelled, due to ongoing numbness and tingling in toes to mid foot. One of the first things he asked was ‘are you celiac’. I’m not. He thought all reflexes were ok but at the last minute decided on nerve conduction tests which were low normal. He was a little confused as he felt they should be be...
    5. Peace lily
      - Peace lily posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Would like to gain weight

      Im still not gaining weight I’m on a gluten free diet . And still having issues with constapation started priobiocs figured it would help been over two weeks . I guess it’s going to be a long road for me .
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      121,224
    • Most Online (within 30 mins)
      7,748
    Suzi374
    Newest Member
    Suzi374
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • plumbago
      Lots of tests

      By plumbago · Posted

      I'm also a nurse, but one who has worked in chronic care, and to some extent, it is more satisfying to see patients through to a diagnosis (as opposed to working in the ED), but an accurate diagnosis does not occur not as often as it should! Your posting presents a lot of information. But a couple of things I can respond to. One, celiac disease is diagnosed by endoscopy and biopsy of the duodenum. So, pathology will need to weigh in. It's not diagnosed on gastroscopy. (At least, not as far as I know). Two, did you get blood tests for celiac disease? You will need to be eating gluten in order for those to be accurate. Three, where was the CT angiogram (of what)? I could go on and on, but thought I'd start there.
    • trents
      Lots of tests

      By trents · Posted

      Was a biopsy done when you had your gastroscopy? Concerning your anemia, are you B12 deficient? It's nearly impossible to get sufficient B12 if you are a vegetarian unless you take supplements.
    • Suzi374
      Lots of tests

      By Suzi374 · Posted

      And I’m anaemic, however I’m also female and vegetarian. I had an iron trans a couple of years ago however it’s starting to dwindle and taking supplements doesn’t seem to work. I can’t seem to absorb it. 
    • Suzi374
      Lots of tests

      By Suzi374 · Posted

      Hi, I attended a neurologist appt last Tuesday, which I nearly cancelled, due to ongoing numbness and tingling in toes to mid foot. One of the first things he asked was ‘are you celiac’. I’m not. He thought all reflexes were ok but at the last minute decided on nerve conduction tests which were low normal. He was a little confused as he felt they should be better and tried a new set of probs, all the time, giving me multiple shocks which were not enjoyable lol. Anyway, he’s now ordered tests for myeloma, and all the vitaminy things that so many of you mention on here, also tests looking for autoimmune responses. I already have Hashimotos. Interestingly, to me, but maybe someone out there can relate or knows more than i do, although I was a nurse, but ED not ‘weird symptoms’  nurse. Anyway back to the interesting thing, I took duramine in 2013 to lose weight which caused a massive panic attack when I stopped taking it and half my hair fell out. I only took it for a week but it was horrible and I regret it. It triggered ongoing panic attacks which are horrendous. So I feel like I’m a bit crazy. Then in 2020 I had this sudden onset of horrible pain when trying to eat a cinnamon roll. It continued and I lost around 20 kgs. I had two gastroscopes and a colonoscopy and they were all normal. I scored a barium swallow and CT angiogram. All normal. The pain subsided a little but I was left with reflux and an awful feeling that I couldn’t get air when I ate some foods. This was not anxiety.  The anxiety was separate and I still maintain this. This was something to do with eating. It was like the air was thick but I wasn’t short of breath. I just had the sensation I was, then it triggered anxiety. Anyway, I had other weird things- couldn’t bend knees to shave legs in shower lol. Knees felt stiff and swollen but they weren’t. Knee WOUld swell up randomly but mri showed minimal issues. A bit of a meniscus degeneration but insignificant. Then the buzzing sensations in my head, the feeling like someone was stabbing me with something sharp. So now, I pre empted his tests, although I don’t think I’m celiac because it should have come up on gastroscopy, I’ve gone off gluten. Since Tuesday last week so 9 days. Since then I don’t appear to be as constipated, I realised I got through today without a nap and I’m not tired, maybe it’s just today and not related but I get very tired normally and sleep straight after work often, I can bend my knees and shave my legs lol, the buzzing vibrating has gone from my head, I had to call and ambulance as my heart decided we were off on a run, but we weren’t running and I’ve been a bit twitchy at bed time when trying to sleep, reflux is improving, I did get the weird suffocating feeling a bit when eating today but not as bad normall. Tingling and numbness still present and I felt like it moved up my legs a bit today but I’m a bit jittery. So I don’t know if it’s celiac disease or a gluten intolerance but I think, and it may be wishful thinking because my symptoms do make life a bit challenging, but maybe I’m feeling better. I don’t feel as cloudy. My thinking feels crisper. Like there’s no buzzing and I’m not fighting to break through the cloudiness now. I hope so much that this may help me feel a bit better moving forward. It would be a miracle as I really have struggled to work and parent and keep the house clean and I’m always anxious and exhausted.  If you get this far, please tell me if you you can relate to any of the above. Oh and tonsils out 5 years ago but before that antibiotics multiple times a year, sometimes intramuscular because they were so bad.  Op was meant to take 30 mins, it took 1.5 hours due to size of them. 
    • Peace lily
      Would like to gain weight

      By Peace lily · Posted

      Im still not gaining weight I’m on a gluten free diet . And still having issues with constapation started priobiocs figured it would help been over two weeks . I guess it’s going to be a long road for me .
×
×
  • Create New...