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How long should I be eating gluten before first biopsy?

kmar27

By kmar27
in Dermatitis Herpetiformis

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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! 

 

 

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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.

 

 

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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
  On 9/2/2017 at 10:32 AM, Laoshi said:

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

Expand Quote  

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
  On 9/2/2017 at 10:32 AM, Laoshi said:

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

Expand Quote  

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.

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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
  On 9/2/2017 at 10:30 AM, 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.

Expand Quote  

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
  On 9/2/2017 at 10:32 AM, Laoshi said:

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

Expand Quote  

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
  On 9/2/2017 at 3:03 PM, 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!   

Expand Quote  

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
  On 9/2/2017 at 8:58 PM, 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.

 

Expand Quote  

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

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