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

How long should I be eating gluten before first biopsy?

kmar27

By kmar27
in Dermatitis Herpetiformis

Recommended Posts

kmar27 Newbie
kmar27
Posted

Hi,

I'm a potential DH-er currently waiting for my referral appointment. My rash started in June and after seeing a clueless doctor multiple times (who had absolutely no idea what it was) he referred me to his awesome colleague who instantly suggested DH and gave me a dermatologist referral. I was warned that the referral could take a long time, so I gave up gluten immediately to try and slow down the rash symptoms temporarily. It had absolutely exploded from a few raised patches under my arms and on my forearms to my; feet, legs, butt (so so bad on my butt :( ) wrists, elbows and backs of knees. The itching was minimal and manageable everywhere apart from my feet which were insanely itchy, especially at night. Cutting out the gluten didn't get rid of the rash but it did stop the itching.

I finally got my referral appointment through, for the beginning of October, and the advice I found online was to make sure I was eating gluten for at least 6 weeks before the appointment, which I am currently doing (and enjoying everything delicious as my last gluteny hurrah :D ) However, I've also come across advice that says I need to be eating it for at least 2 months or I'll get a false negative. 

So my question is, is 6 weeks long enough for the antibodies to be present? Bear in mind I was eating gluten my whole life until June, then spent probably 3 weeks or so gluten free (enough to kill the itching) and now am eating it like normal again. 

Any advice would be very greatly appreciated! 

 

 

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

Celiac.com Sponsor (A8-M):


kareng Grand Master
kareng
Posted

i think to biopsy your DH, you just need  fresh lesion.  If you get that after 2 days... that would be enough.

 

 

Open Original Shared Link

 

Open Original Shared Link

squirmingitch Veteran
squirmingitch
Posted

Ideally you should be eating gluten for 12 weeks just like anyone getting the celiac blood panel who has gone gluten free prior to testing.

 

Laoshi Rookie
Laoshi
Posted

I never got the test because I didn't want to deliberately  eat gluten....Until...on a mad whim I had decided to eat a bun after a year off gluten, and got so sick--and because a week after eating it I was still experiencing symptoms from the one bun, decided I would go get the test.  It was a tTg test and even though it was one full week after I had one hot dog bun, the test showed my gluten antibodies at 99. The normal range being under 10.  So I would say that you don't have to be continually eating gluten, but maybe everyone is different.  Maybe my body went into alarm mode after a year off gluten and eating a huge bun.

Laoshi Rookie
Laoshi
Posted

Also, I did get dh later.  It disappeared after I gave up dairy, which apparently is quite molecularly similar to gluten.

kareng Grand Master
kareng
Posted
2 hours ago, Laoshi said:

Also, I did get dh later.  It disappeared after I gave up dairy, which apparently is quite molecularly similar to gluten.

Unless you got it biopsies, it probably wasn't DH.  DH does not disappear when you stop dairy.  Unfortunately, There are lots of nasty rashes.

Victoria1234 Experienced
Victoria1234
Posted
4 hours ago, Laoshi said:

Also, I did get dh later.  It disappeared after I gave up dairy, which apparently is quite molecularly similar to gluten.

My dh didn't go away for about a year or so off gluten if I recall. By that time I had reintroduced dairy as I was so depressed without it! I'm from Wisconsin and cheese is a way of life.

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

Celiac.com Sponsor (A8-M):


kmar27 Newbie
kmar27
Posted
  • Author

Thanks guys, I guess there's a bunch of different advice and different experiences out there. I've done a bit more digging and the Coeliac.co.uk site recommends 6 weeks before the skin biopsy and over here at Celiac.com it's 12 weeks like @squirmingitch said. I imagine some doctors want you to be glutening for as long as possible to avoid the false negative? 

Thanks for all your advice, I'm so glad this site and others exist to help get info! The doctors I saw didn't explain anything about this, everything I've found has been on the internet. 

I don't really have any severe digestive symptoms (just the infernal rash :angry:) so I think I'm ok to keep it up until my appointment and hopefully I'll have cultivated enough little antibodies to get a positive!   

cyclinglady Grand Master
cyclinglady
Posted
5 hours ago, Laoshi said:

I never got the test because I didn't want to deliberately  eat gluten....Until...on a mad whim I had decided to eat a bun after a year off gluten, and got so sick--and because a week after eating it I was still experiencing symptoms from the one bun, decided I would go get the test.  It was a tTg test and even though it was one full week after I had one hot dog bun, the test showed my gluten antibodies at 99. The normal range being under 10.  So I would say that you don't have to be continually eating gluten, but maybe everyone is different.  Maybe my body went into alarm mode after a year off gluten and eating a huge bun.

True.  Everyone is different.  It can take just a few days or it can take weeks for antibodies to ramp up.  I assume you have avoided buns like the plague now!  ?

cyclinglady Grand Master
cyclinglady
Posted
5 hours ago, Laoshi said:

Also, I did get dh later.  It disappeared after I gave up dairy, which apparently is quite molecularly similar to gluten.

It might have just been a coincidence.  If you have celiac disease, you can also have a permant (not just due to celiac disease, but genetic) or temporary lactose intolerance.   I would imagine that consuming lactose or milk proteins (if you are  allergic), could contribute to inflammation and a heightened immune response.  I do not have DH, but I do have rosacea which flares when I am recovering for a celiac flare-up.  

Someday, researchers will really figure out "leaky gut".  

Glad your DH is in remission!  

 

squirmingitch Veteran
squirmingitch
Posted
5 hours ago, kmar27 said:

Thanks guys, I guess there's a bunch of different advice and different experiences out there. I've done a bit more digging and the Coeliac.co.uk site recommends 6 weeks before the skin biopsy and over here at Celiac.com it's 12 weeks like @squirmingitch said. I imagine some doctors want you to be glutening for as long as possible to avoid the false negative? 

Thanks for all your advice, I'm so glad this site and others exist to help get info! The doctors I saw didn't explain anything about this, everything I've found has been on the internet. 

I don't really have any severe digestive symptoms (just the infernal rash :angry:) so I think I'm ok to keep it up until my appointment and hopefully I'll have cultivated enough little antibodies to get a positive!   

Those with dh tend not to have as severe GI symptoms or no GI symptoms at all as opposed to celiacs who do not have dh. Make SURE they take the dh biopsy form a CLEAR area ADJACENT to an active lesion. Anything else is not a dh biopsy.

 

kmar27 Newbie
kmar27
Posted
  • Author
3 hours ago, squirmingitch said:

Those with dh tend not to have as severe GI symptoms or no GI symptoms at all as opposed to celiacs who do not have dh. Make SURE they take the dh biopsy form a CLEAR area ADJACENT to an active lesion. Anything else is not a dh biopsy.

 

Thank you for the advice @squirmingitch, I will make sure they do! 

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. Mari
      - Mari replied to KathyR37's topic in Coping with Celiac Disease
      5

      New here

      Hi Katht - I sympathize with your struggles in following a gluten-free diet and lifestyle. I found out that I had Celiac Disease a few months before I turned 70. I just turned 89 and it has taken me almost 20 years to attain a fairly normal intestinal function. I also lost a lot of weight, down to 100 lb. down from about 140 lb. What Trents wrote you was...
    2. 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..☺️
    3. 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 !!
    4. 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...
    5. 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...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,877
    • Most Online (within 30 mins)
      7,748
    Christian Konig
    Newest Member
    Christian Konig
    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

    • Mari
      New here

      By Mari · Posted

      Hi Katht -  I sympathize with your struggles in following a gluten-free diet and lifestyle. I found out that I had Celiac Disease a few months before I turned 70. I just turned 89 and it has taken me almost 20 years to attain a fairly normal intestinal  function. I also lost a lot of weight, down to 100 lb. down from about 140 lb. What Trents wrote you was very true for me. I am still elimination foods from my diet. One person suggested you keep a food diary and that is a good idea but it is probably best just to do an elimination diet. There are several ne and maybe one for celiacs. I used one for a while and started with plain rice and zucchini and then added back other foods to see if I reacted or not. That helped a great deal but what I did not realise that it would only very small amounts of some foods to cause inflammation in my intestine. Within the last few years I have stopped eating any trace amounts of hot peppers, corn and soy(mostly in supplements) and nuts, (the corn in Tylenol was giving me stomach aches and the nuts were causing foot pains). Starting an elimination diet with white rice is better than brown rice that has some natural toxins. In addition it is very important to drink sufficient plain water. You can find out how much to drink for your height and weight online. I do have difficulty drinking 48 ounces of water but just recently have found an electrolyte supplement that helps me stay well hydrated, Adding the water and electrolytes may reduce muscle cramps and gag spams you wrote about. . Also buy some anti-gluten enzyme capsules to take with meals. I use GliadinX advertised here. These are a lot of things to do at one time as they reflect my 20 years of experience. I hope you do what you can manage to do over time. Good luck and take care.
    • 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.
×
×
  • 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.