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 Our Content
    eNewsletter
    Donate

mgm96

Recommended Posts

mgm96 Newbie

Hi everyone, I’m hoping I can get some guidance here. 

Two years ago I saw a naturopath for some gastro issues, among others. She made the connection between them and the EXTREMELY itchy rash I’d been experiencing, telling me it was possibly celiac/DH. All the blood work she ordered came back negative for celiac, but there was evidence in the tests of lots of inflammation in my body. I also noticed the rash getting slightly better when I did a gluten-free diet for a few weeks.

Because I still live/eat with my family at home they won’t take this diagnosis seriously without it being confirmed by my normal doctor. So after bringing up everything the naturopath said to my GP, she wrote it off as eczema and IBS. Since then I’ve been stuck in this cycle of my doctor prescribing a new steroid cream every time I see her and finding no relief at all. I’ve finally convinced her to refer me to a dermatologist and after a phone visit I have a biopsy scheduled for the end of this month. 

I’m hopeful describing my symptoms and seeing the rash in person will lead the derm to consider DH. But my question is, do I have to bring up DH/celiac or will the biopsy prove the rash isn’t eczema on its own? 

I fear my thoughts on what’s going on will just be written off automatically because they’re coming from a naturopath, as that was my GP and families reaction.

Any thoughts/ideas/advice is much appreciated.


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



Celiac.com Sponsor (A8-M):



trents Grand Master
(edited)

I wouldn't hesitate to mention to the dermatologist that you have been having gastro issues and are wondering if you might have celiac disease. Helping the dermo doc make that possible connection will help eliminate the possibility of a missed DH/celiac disease diagnosis.

What blood work did the naturopath order? What specific tests? Do you have a record of it and can you post the tests and test results on this forum? It may be that the most helpful ones were not included in the order.

I would do some research on the blood tests that can be done for celiac disease (a "full celiac panel"), print it out and give it to your GP if you suspect celiac disease.

This might help:

Some of the blood tests are more specific for celiac disease but less sensitive. Some are more sensitive but less specific.

Edited by trents
Scott Adams Grand Master

Any chance you could share your last celiac test results with us? 

mgm96 Newbie
10 minutes ago, trents said:

I wouldn't hesitate to mention to the dermatologist that you have been having gastro issues and are wondering if you might have celiac disease. Helping the dermo doc make that possible connection will help eliminate the possibility of a missed DH/celiac disease diagnosis.

What blood work did the naturopath order? What specific tests? Do you have a record of it and can you post the tests and test results on this forum? It may be that the most helpful ones were not included in the order.

I would do some research on the blood tests that can be done for celiac disease (a "full celiac panel"), print it out and give it to your GP if you suspect celiac disease.

This might help:

Some of the blood tests are more specific for celiac disease but less sensitive. Some are more sensitive but less specific.

Thanks so much for your reply! I can’t seem to access the results, but I can see if they are “flagged” or not. My IGA, TTG-IGA and Gliadin IGA are normal. But my ANA was high and I remember her saying untreated celiac can cause this if no other auto-immune diseases are present. 

mgm96 Newbie
5 minutes ago, Scott Adams said:

Any chance you could share your last celiac test results with us? 

I don’t have my exact results but I can see if they are “flagged” or not. My IGA, TTG-IGA and Gliadin IGA are normal. But my ANA was high and I remember the naturopath I saw saying untreated celiac can cause this if no other auto-immune diseases are present

Scott Adams Grand Master

Unfortunately, "normal" according to many doctors might be a TTG score of 8, when the cut-off for celiac disease is <9. Having a score of 8 in this case, in my opinion, is not normal. Perhaps you can ask your doctor for the exact results, along with the cut-off markers for a positive test? To me, many of these "normal" results may still indicate gluten sensitivity.

tanya l Newbie
On 3/20/2021 at 9:53 PM, mgm96 said:

Hi everyone, I’m hoping I can get some guidance here. 

Two years ago I saw a naturopath for some gastro issues, among others. She made the connection between them and the EXTREMELY itchy rash I’d been experiencing, telling me it was possibly celiac/DH. All the blood work she ordered came back negative for celiac, but there was evidence in the tests of lots of inflammation in my body. I also noticed the rash getting slightly better when I did a gluten-free diet for a few weeks.

Because I still live/eat with my family at home they won’t take this diagnosis seriously without it being confirmed by my normal doctor. So after bringing up everything the naturopath said to my GP, she wrote it off as eczema and IBS. Since then I’ve been stuck in this cycle of my doctor prescribing a new steroid cream every time I see her and finding no relief at all. I’ve finally convinced her to refer me to a dermatologist and after a phone visit I have a biopsy scheduled for the end of this month. 

I’m hopeful describing my symptoms and seeing the rash in person will lead the derm to consider DH. But my question is, do I have to bring up DH/celiac or will the biopsy prove the rash isn’t eczema on its own? 

I fear my thoughts on what’s going on will just be written off automatically because they’re coming from a naturopath, as that was my GP and families reaction.

Any thoughts/ideas/advice is much appreciated.

Hello!

I saw a dermatologist for confirmation of what my Naturopathic Dr said was DH but the initial derm I saw didn't even know what it was...just a suggestion to call the dermatologist office first and make sure that Dr is familiar with DH specifically.  I found one who has given me much more logical answers for this maddening condition.  The test that they ran for a biopsy was definitively DH, so there wasn't confusion that it could be eczema.  

Best wishes to you on your healing journey.  


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



Celiac.com Sponsor (A8-M):



mgm96 Newbie
On 3/21/2021 at 12:07 PM, Scott Adams said:

Unfortunately, "normal" according to many doctors might be a TTG score of 8, when the cut-off for celiac disease is <9. Having a score of 8 in this case, in my opinion, is not normal. Perhaps you can ask your doctor for the exact results, along with the cut-off markers for a positive test? To me, many of these "normal" results may still indicate gluten sensitivity.

I was able to get my results from my doctor and have listed them below! 
 

IGA Reflexive - 133 (>378 is positive)

TTG-IGA - 2.97 (>20 is positive) 

Deaminated Gliadin IGA - 5 (<20 antibody not detected)

Deaminated Gliadin IGG - 2 (<20 antibody not detected) 

52 minutes ago, tanya l said:

Hello!

I saw a dermatologist for confirmation of what my Naturopathic Dr said was DH but the initial derm I saw didn't even know what it was...just a suggestion to call the dermatologist office first and make sure that Dr is familiar with DH specifically.  I found one who has given me much more logical answers for this maddening condition.  The test that they ran for a biopsy was definitively DH, so there wasn't confusion that it could be eczema.  

Best wishes to you on your healing journey.  

I think I’ll give them a call, I’m worried they won’t know what I’m talking about when I bring it up. But I’m hopeful the biopsy will at least rule out eczema. 

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

  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      128,153
    • Most Online (within 30 mins)
      7,748

    T Butcher
    Newest Member
    T Butcher
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.7k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Matt13
      Hi Guys, i did repeat biopsy after marsh3b (without erosion) and results are now: normal villi without atrtophy, 25/100 iel and moderate mononuclear inflamation in lamia propria, with occesional granulocytes. Doc says the he saw little erosion on duodenum. Is this good ? I mean is this progress? Please help!
    • Scott Adams
      In case you decide to go the route of a gluten challenge for a celiac disease blood test or biopsy: Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:    
    • Wheatwacked
      Kosher salt is not usually iodized. Shortly after starting GFD in 2014, I realized I wasn't getting enough iodine.  Growing up in the 50's and 60's we ate bread that used iodine as a dough modifier so each slice had about 100 mcg of iodine.  A sandwich and glass of milk supplied 300 mcg a day.  In the 70's they stopped using iodine as a conditioner in the US.  Then everyone got scared of milk.  The US intake of iodine dropped 50% since 1974.  Prescriptions of Thyroxine for hypothyroid disease doubled in the same period.  I tried using iodized salt and seaweed and took an expensive thyroid supplement but it wasn't enough.  In 2014 I had a sebaceous cyst (third eye blind).  The previous 6 cysts on my face had all drained and healed with no problem back in the 1990,s.  One on my check had sugically removed. They are genetic from my mom and my brother and son also get them in the same places.  This one I did not have surgery for because I wanted a bellweather to moniter healing.  It did not start healing until I started until 10 years when I started taking 600 mcg of Liquid Iodine a year ago Nov 2023. Lot's of comment about how it was offputting and maybe cancer, it was deep, down to the bone, but I can be obstenant.  Now it is scabbing over and healing normally.  Vision is returning to my right eye (glucoma), musle tone in my chest was the first sign of improvement.  For healing, iodine breaks down defective and aging cells to make room for new growth. I take Liquid Iodine drops from Pipingrock.com but there is also Strong Iodine and Lugols Solution. 50 mcg/drop a dropper full is 12 drops, 600 mcg.,  usually I put it in a can of Red Bull, My brother, son and his family also started taking it. https://www.pipingrock.com/iodine/liquid-iodine-2-fl-oz-59-ml-dropper-bottle-14690 390 drops for $8.  They ship internationally if you can't find it locally. It the US the Safe Tolerable Upper Limit is 1000 mcg a day.  In Japan it is 3000 mcg a day.  The Japanese traditional diet has 50% less breast cancer, nicer hair, skin and nails, and in the 80's the US educational system dropped down comared to the rest of the world while Japanese kids moved up to the top.  Low iodine affects brain fog. According to most education rankings, Japan generally has a higher education rating than the United States, with Japan often ranking within the top 10 globally while the US usually places slightly lower.  In the 1960s, the United States was near the top of the world for education, especially for young people.  About why iodine was removed from medicint: The Wolff-Chaikoff Effect: Crying Wolf? About why over 40% of us are vitamin D deficient: Mayo Proceedings,  Vitamin D Is Not as Toxic as Was Once Thought:  
    • trents
      Current "gluten challenge" recommendations are the daily consumption of at least 10g of gluten (about the amount found in 4-6 slices of wheat bread) daily leading up to the day of the biopsy.
    • Bebee
      Thank you for your input!  I would really like to know if I have celiac disease because you need make sure you are not getting any cross contamination due to cancer concerns.  I guess I need to start with a knowledgeable Gastroenterologist. Thank you again!
×
×
  • Create New...