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

Newbie with questions

Drabbyp
 Share

Recommended Posts

Drabbyp Newbie
Drabbyp
Posted

I don't know a ton about celiac (so as I type you'll realize this)but multiple doctors have been suspicious for a few years.  Here is what I know.  I had a colonscopy 2 years ago because I'd had a bowel obstruction.  Prior to my colonoscopy I'd been gluten free for about 3 months.  They got me in pretty quickly (never had a consult, my primary just ordered the colonoscopy) and looking back only had gluten back in my diet less than 2 weeks prior.  I recently met with a gastro who re-looked at the results and said that all my villi were all still there, but he said that there was definitely some inflammation or abnormalities surrounding them.  He wondered if maybe knowing my history now if it was because I'd been gluten free prior). 

 

Here's what I've had: Immunoglobulin A was 271, so in range.  Tissue Transglutaminase/AB, IGA was negative, and most recently they did the HLA/ DQ2/DQB and my results were DQ2 Heterozygous.  I've dealt with diarrhea, constipation, bloating, fatigue, joint pain (could be PA)  I have psoriasis, psoriatic arthritis, exzema and a skin biopsy done a few years ago confirmed issues with Dermatitis Herpetiformis.  This has all gone on for years. 

 

I'm initially finding this site a little overwhelming and not easy to navigate, so thought I'd ask to get some help.  I appreciate any thoughts you might have.  Thanks!

 

Can anyone give a little feedback

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

Celiac.com Sponsor (A8-M):


kareng Grand Master
kareng
Posted
16 minutes ago, Drabbyp said:

I don't know a ton about celiac (so as I type you'll realize this)but multiple doctors have been suspicious for a few years.  Here is what I know.  I had a colonscopy 2 years ago because I'd had a bowel obstruction.  Prior to my colonoscopy I'd been gluten free for about 3 months.  They got me in pretty quickly (never had a consult, my primary just ordered the colonoscopy) and looking back only had gluten back in my diet less than 2 weeks prior.  I recently met with a gastro who re-looked at the results and said that all my villi were all still there, but he said that there was definitely some inflammation or abnormalities surrounding them.  He wondered if maybe knowing my history now if it was because I'd been gluten free prior). 

 

Here's what I've had: Immunoglobulin A was 271, so in range.  Tissue Transglutaminase/AB, IGA was negative, and most recently they did the HLA/ DQ2/DQB and my results were DQ2 Heterozygous.  I've dealt with diarrhea, constipation, bloating, fatigue, joint pain (could be PA)  I have psoriasis, psoriatic arthritis, exzema and a skin biopsy done a few years ago confirmed issues with Dermatitis Herpetiformis.  This has all gone on for years. 

 

I'm initially finding this site a little overwhelming and not easy to navigate, so thought I'd ask to get some help.  I appreciate any thoughts you might have.  Thanks!

 

Can anyone give a little feedback

Were you gluten free when you had the blood work?

Drabbyp Newbie
Drabbyp
Posted
  • Author

No

GFinDC Veteran
GFinDC
Posted
(edited)

Hi Drabbyp,

Were you positive on the DH testing?  If you have DH, you have celiac disease, no other testing is needed to confirm it.  Only people with celiac disease can get DH.  DH is a condition where IgA anti-gliaden antibodies are deposited in the skin.  It is often very itchy and appears in a symmetrical pattern on both sides of the body.  Like both elbows, or both butt cheeks, both knees etc.

Edited by GFinDC
kareng Grand Master
kareng
Posted
(edited)

Like GFin DC said, if you are diagnosed with DH , then you have a Celiac diagnosis.  People with DH sometimes don't have the elevated blood tests but will still have intestinal damage.  That damage is usually not seen during a colonoscopy.  They do an endoscopy (looks at small intestine) and biopsy it.  But if you were gluten-free at that time, it should be mostly healed.  

 

So the big issue here is that you have been diagnosed with Celiac , yet you are not eating gluten free.  

 

Open Original Shared Link

 

"Many people with DH have no digestive symptoms and only about 40% of them have the positive blood tests (serology) for celiac disease. However, they almost always have the same, gluten-dependent intestinal damage as those with the more common symptoms of celiac disease. Unless otherwise specified, the information pertaining to celiac disease also pertains to people with DH. In addition to following a strict gluten free diet, DH is also commonly treated with a medication called Dapsone"

Edited by kareng

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
 Share
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. Colleen H
      - Colleen H replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      15

      Ibuprofen

      Yes thyroid was tested.. negative Iron ...I'm. Not sure ... Would that fall under red blood count? If so I was ok Thank you for the detailed response..☺️
    2. Colleen H
      - Colleen H posted a topic in Coping with Celiac Disease
      0

      Methylprednisone treatment for inflammation?

      Hi all !! Did anyone ever get prescribed methylprednisone steroids for inflammation of stomach and intestines? Did it work ?? Thank you !!
    3. cristiana
      - cristiana replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      15

      Ibuprofen

      Hi Colleen Are you supplementing B12/having injections? I have learned recently that sometimes when you start addressing a B12 deficiency, it can temporarily make your symptoms worse. But it is important not to stop the treatment. Regarding your problems with anxiety, again that is another symptom of a B12 deficiency. I didn't know...
    4. Jmartes71
      - Jmartes71 posted a topic in Coping with Celiac Disease
      0

      My only proof

      Hello still dancing around my celiac disease and not getting medically backed up considering Ive been glutenfree since 1994.All my ailments are the core issue of my ghost disease aka celiac disease. Im angery because the "celiac specialist " basically lightly dismissed me.Im extremely angery and fighting for a new primary care physician which is hard to do...
    5. Scott Adams
      - Scott Adams replied to wellthatsfun's topic in Coping with Celiac Disease
      1

      still struggling with cravings

      I totally get this. It's absolutely a grieving process, and it's okay to feel gutted about the loss of those simple joys, especially at 18. Your feelings are completely valid—it's not about being ungrateful for your amazing boyfriend, it's about mourning the life you thought you'd have. That "tortured by the smell" feeling is so real. It does get easier, ...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,873
    • Most Online (within 30 mins)
      7,748
    oscarbolduc
    Newest Member
    oscarbolduc
    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

    • Colleen H
      Ibuprofen

      By Colleen H · Posted

      Yes thyroid was tested.. negative  Iron ...I'm. Not sure ... Would that fall under red blood count?  If so I was ok  Thank you for the detailed response..☺️
    • Colleen H
      Methylprednisone treatment for inflammation?

      By Colleen H · Posted

      Hi all !! Did anyone ever get prescribed methylprednisone steroids for inflammation of stomach and intestines?  Did it work ??  Thank you !! 
    • cristiana
      Ibuprofen

      By cristiana · Posted

      Hi Colleen Are you supplementing B12/having injections? I have learned recently that sometimes when you start addressing a B12 deficiency, it can temporarily make your symptoms worse.  But it is important not to stop the treatment.  Regarding your problems with anxiety, again that is another symptom of a B12 deficiency.   I didn't know what anxiety was until it hit me like a train several months before gastrointestinal issues began, so I can certainly relate.   Two books which helped me hugely were At Last A Life by Paul David (there is a website you can look up) and The Depression Cure: The Six-Step Programme to Beat Depression Without Drugs by Dr Steve Llardi.  Although his book is aimed at people who have depression, following the principals he sets out was so helpful in lessening my anxiety.  Llardi suggests we need to focus on getting enough: - physical exercise - omega-3 fatty acids - natural sunlight exposure - restorative sleep - social connectedness - meaningful, engaging activity   ... and we should feel a lot better. That is not to stay you must stop taking medication for depression or anxiety if you have been prescribed it, but adopting the changes Dr Llardi sets out in the book should really help. Can I just ask two more questions:  1) you say that you are B12 deficient, did they test your iron levels too?  If not, you really ought to be checked for deficiency and, 2) did they check your thyroid function, as an overactive thyroid can be cause rapid heartbeat and a lot of coeliacs have thyroid issues? Cristiana        
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      Hello still dancing around my celiac disease and not getting medically backed up considering Ive been glutenfree since 1994.All my ailments are the core issue of my ghost disease aka celiac disease. Im angery because the "celiac specialist " basically lightly dismissed me.Im extremely angery and fighting for a new primary care physician which is hard to do in Northern Cali.So currently without and looking.Im angery that its lightly taken when its extremely serious to the one who has it.My only evidence is a brochure back in the days when I got news letters when I lived at my parents.It was published in 1998.I was diagnosed before any foods eliminated from my diet. Angery doctors don't take seriously when Im clearly speaking.I did write to the medicine of congress and have case number.
    • Scott Adams
      still struggling with cravings

      By Scott Adams · Posted

      I totally get this. It's absolutely a grieving process, and it's okay to feel gutted about the loss of those simple joys, especially at 18. Your feelings are completely valid—it's not about being ungrateful for your amazing boyfriend, it's about mourning the life you thought you'd have. That "tortured by the smell" feeling is so real. It does get easier, I promise, but it's okay to sit in the sadness and just vent about how much it stings right now. Thanks for sharing that. Celiac.com has published a book on our site by Jean Duane PhD called Gluten-Centric Culture, which covers many of the social aspects of having celiac disease: This chapter in particular covers issues around eating with family and others - Gluten-Centric Culture: Chapter 5 - Grabbing A Bite Together:    
×
×
  • 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.