How Long Is Gluten Detectable In Your Skin Or Blood After You Go gluten-free?

[crazyitch]

I just have a quick question for anybody here who may have an answer or some information.  I am wondering how long it takes of being gluten free for the gluten not to show up in skin/blood tests done by a dermatologist?  I have read much in here about gluten challenges and they say you have to be on gluten for minimum 2 months for it to be detected in testing but I haven't seen anything about how long you need to be gluten free in order for the result to be negative.  I ask because I have been gluten free for almost 3 weeks (I may have had some contamination as I haven't seen much improvement yet) but I am wondering if I will already show negative if he decides to do testing?  My appointment is in 6 days. Thanks in advance for any information on this......

 

Elaine

[kareng]

I know it can takes weeks or months to get antibodies down. But, if you don't have a lot of antibodies, a few weeks gluten-free can make a difference. For the skin biopsy, you need a fresh lesion. Not sure if you are still getting them gluten-free?

Open Original Shared Link

I stopped eating gluten right before my blood screening. Will that impact my results?

To get the most accurate screening results, we recommend 12 weeks of daily gluten intake prior to blood testing. If you’ve followed a gluten-containing diet, as recommended, but went gluten-free a few days prior to your screening, it’s likely that you’ll still see accurate results from your tests.

Open Original Shared Link

How much gluten should be consumed prior to being screened for celiac disease?

It’s best to continue a normal, gluten-containing diet before being screened and diagnosed. If a gluten-free diet has been followed for more than a few weeks, then we recommend eating at least 1 serving of gluten (1/2 slice of bread or a cracker, for example) every day for 12 weeks prior to a blood test and 2 weeks prior to a biopsy. This is often referred to as a “gluten challenge” and should be done under the care of a medical professional.

[GottaSki]

If there are active DH lesions, the antibodies can stay in the skin for quite some time.

 

For blood/antibody testing -- it depends.  Generally you will see numbers decrease substantially by 3 or 6 months and be very low by the one year check.

 

There is no reason to re-test blood/antibodies at 3 weeks.  The earliest is 3 months -- many doctors wait until 6 months.

[crazyitch]

Thank you for the information.  I am not even sure I have DH, I have had a nasty rash for almost 6 months that sent me to the internet doing my own research which is how I ended up here.  I've had 7 dr's appts and  4 different diagnosis' (3 of the appts only netted me baffled looks from the gps and prescriptions for cream and antihistamines).  I have started a gluten free diet to see if it get any result from it.  I know that it takes quite a while see an improvement so I don't expect much yet.  I just wondered if I would still have gluten in my system.  I will explain it all to the dermatologist and I am sure he will know whether to bother testing or if it is going to be a waste of time

 

Thanks again!

Elaine

[powerofpositivethinking]

ive been super strict about my diet, but I finally entered the weak postive range on my blood tests after about 9 months.  I honestly thought I would be in the negative range because I have hardly eaten out, am very careful about CC and all my personal care products are gluten-free.  Everything is moving in the right direction, so that's the positive Hope your appointment goes well!

[squirmingitch]

Elaine, I think you're talking about the skin biopsy right? I don't have an exact answer on just how long the skin biopsy can pick up the antibodies but it's not long. Testing is not as sensitive as our skin is sensitive. But here's an answer for you from the U of Chicago Celiac Disease Center re: skin biopsy for dh:

Open Original Shared Link

 

It says:

I’m scheduled to have a skin biopsy to screen for celiac disease, should I maintain a gluten-containing diet similar to those who are being screened via blood or intestinal biopsy?

Yes.

[cahill]

 If you are going to have  any testing for celiacs Do not stop eating gluten until your testing is complete .

 

 

  That said ...

 

 

I had active DH lesions well into my second year gluten free.The fact that I was undiagnosed for an extremely long time and am super sensitive are major factors that contributed to this I am sure .

[kmag]

I just saw a dermatologist at Women's College Hospital in Toronto three weeks ago and was assured that the antibodies would still be in my skin after three years gluten free.  I had the biopsy done for DH and will get the results on Feb 27.  She was absolutely certain that they stay in your skin for a very long time.  I also read a research article recently that said the average clearing time was close to 12 years.  

[cahill]

I just saw a dermatologist at Women's College Hospital in Toronto three weeks ago and was assured that the antibodies would still be in my skin after three years gluten free.  I had the biopsy done for DH and will get the results on Feb 27.  She was absolutely certain that they stay in your skin for a very long time.  I also read a research article recently that said the average clearing time was close to 12 years.  

Was this article on-line,,, if so could you give me the link I would love to read it .

[squirmingitch]

I just saw a dermatologist at Women's College Hospital in Toronto three weeks ago and was assured that the antibodies would still be in my skin after three years gluten free.  I had the biopsy done for DH and will get the results on Feb 27.  She was absolutely certain that they stay in your skin for a very long time.  I also read a research article recently that said the average clearing time was close to 12 years.  

I also would love to read this research article.

[crazyitch]

Hi Squirming, I am talking about a skin biopsy and maybe blood tests if they do them. I am not sure if I have new lesions, the rash is spreading on my arms and legs and I seem to get the sores from scratching. I dont even know if the itch would break out into sores if I didnt scratch them. Once I have the scabs they get scratched and rescratched because they are so damn itchy. This whole rash is so confusing. It fits many of the DH characteristics but it is definitely not blisters so I am not even sure of what it is. I would rather have a definite answer as to what it is than be left with a another baffled dr and 'stab in the dark' 'spin the bottle' diagnosis. Not knowing leaves me guessing at how to tackle it.

I would also like to read the article mentioned in the previous posts. I am trying to gain as much knowledge and info as I can.

Such a frustrating ailment....grrrrrrrrr

[squirmingitch]

I understand Elaine. Please do not get hung up on the blisters part ~~~ that's the same thing derms do & why it's so frustrating. DH doesn't always present as blisters. Um, what you're describing with itchiness speaks for itself ~~~ you can't leave it alone long enough to find out if it will erupt ~~~ I'm betting it would if you could not touch it but you can't & I understand that. I understand you want a solid dx. I know you're frustrated beyond belief. How many different incorrect dx's have you had????? And how many different treatments???? So you know it isn't any of those things.

So go to the derm & if he/she says they will biopsy for dh then go home & eat gluten for 2 months & go back to the derm & get a biopsy. The biopsy is stained with a fluorescent dye & the lab tech looks through a microscope looking for a specific pattern. The lab tech has to know what they're doing & what they're looking for so the doc has to be specific on the orders. This is not something where a piece of litmus paper is stuck in some fluid & it comes out positive or negative. This is subject to human error in interpretation. 

[squirmingitch]

I edited my post above so if you had read it, then please read it again.

 

And if the derm takes a biopsy now, then when it comes back negative you will still not have your answer b/c you won't know if it's a false negative or not. And if the derm does a biopsy now & it comes back negative WILL THE DERM AGREE TO DO ANOTHER BIOPSY AFTER YOU HAVE EATEN GLUTEN FOR 2 MONTHS???????

And if you eat gluten for 2 months & then get a dh biopsy ~~~ it would be better to get 2 biopsies & have them sent to different labs so you have 2 techs reading them.

And if you eat gluten for 2 months & you get a celiac blood panel then I hope you are not one of the 60% of us who test false negative on the blood panel.

 

These are the choices. None of us like them. They flat out suck! Every single person on here who does not have one, wishes they had a solid dx. Well, almost everyone. My hubs does not care about a dx by a doc b/c my hubs knows what he has. There may be others who feel the same.

 

And I am again going to give you this link & ask that you read the descriptions of dh that Henry Weightman Stelwagon wrote. 

You will see that not all dh presents as water filled blisters.

https://www.celiac.com/forums/topic/84513-descriptions-of-dh-types/

[squirmingitch]

Elaine, I hope you got some kind of answers today. At least something that will help you settle this in your mind & a derm who is knowledgeable. 

[crazyitch]

Hi I am back and no definite answers, The dermatologist says she thinks it  looks eczematic.  I had pictures of my tummy and back to show her from when I stopped the prednisone (it was really bad then) just to show her what the flare up looked like. I told her I had seen similar rashes that were caused from gluten sensitivity and was trying the gluten free diet  to see if I saw any improvement.  She said exactly what you thought she would say, that it wasn't on my knees or my scalp etc so it probably wasn't DH. She wanted to know if the lesions come as a result of my scratching or if they are there whether I scratch or not. I said my skin itches and burns with nothing apparent and then I scratch and voila a bleeding sore.  Then that sore takes forever to heal because it continues to itch and be scratched.  She doesn't have an answer as to what it is but said that it appears that my scratching is making it flare more and seems to think that if she can stop the itch that it should clear up. She prescribed more cortisone cream with more antihistamines and seems to feel if I put it on more often that it should work.  She also put me on a diet of lamb, rice, pears, and water....yep that is all I can eat for 2 weeks....no salt, spices, sugar, caffeine, gluten, dairy soy, etc etc.  She only decided on that treatment after I told her I had cut out the gluten, felt like she was 'one upping' my gluten free thing lol.  I have to go back in two weeks and she is going to assess the rash. If it isn't better she said she may try a skin biopsy but says there is nothing really to biopsy.  I am beyond frustrated at this point.  I am not sure what the point of restricting my diet to that degree is all about, she did not elaborate on that.  So I guess all I can say at this point is stay tuned!
 
On another note, after the appointment I was at the grocery store (buying the most expensive meat on the planet...yes you guessed it baaaaaaaaaa) and I happened to start talking to a lady who was working there doing food demo's  I told her I couldn't have what she was offering as I was on a restricted diet.  After much Yada yada yada-ing....(she told me her tale of food woes) she suggested a naturopath.  Just wondering if anyone has any thoughts on going that route?  She said the naturopath did blood panels that specifically screen for food sensitivities and deficiencies and after she stopped eating the things the naturopath identified as bad for her, her skin cleared and her migraines stopped. Any thoughts or experience on this would be appreciated.  I live in Canada and our health is universal but doesn't cover naturopaths.  The blood tests are several hundred dollars not sure if that's a good idea or not.  Anyway I am no further ahead at this point except for being out of pocket for lamb chops and betamethasone ....I will climb back onto my hamster wheel and wait for a response........
 
E

[squirmingitch]

I'm so sorry Elaine. I had hoped you would get lucky with a derm who knows what's what & at least get some kind of answer or hope of one.

And how many times have people been on this forum who have been to the derm & the derm says they made the rash/lesions come by scratching? I don't even want to count.

The diet she has you on is ensuring nothing you're eating is aggravating your skin. And if it & the creams she gave you work then she will feel all superior & I told you so-ish while conveniently "forgetting" that you've been gluten free & low iodine for an 2 additional weeks. HA! So she has you on a gluten free diet without having to admit she's got you on a gluten free diet. 

 

I can't answer as to a naturopath. I have never been to one. Pricklypear has & maybe she will have some advice for you.

[crazyitch]

Has Prickly posted about her experience with the naturopath?  I am just wondering how I would find those posts.....I am not too savvy on finding specific info on this forum. 

 

My husband thinks the naturopath with the blood panels specifically targeting food sensitivity is the route to go so we may try that. 

 

I am curious as to what the derm will say when  I show up in a week and a half and still have the rash......if it is gone by then I will eat my  hat and my husbands too (as long as they are gluten free ).  On the upside I have lost 6 lbs on this diet.....if I can calm the rash I may yet have hope for a bikini this summer!!!

[squirmingitch]

Well, your photo surely does not reflect that you have a need to loose weight & I love that happy, bright smile.  However, celiacs come in all shapes & sizes & is yet another source of frustration for us with the doctors as most of them think you have to be emaciated to be a celiac. You won't be the first to loose weight on the diet! Malabsorption can cause us to be skinny or plump.

 

No, I don't recall Prickly specifically posting about her experiences with the naturopath. My recollection is that she would mention this or that but not that she did a specific post on the subject.

 

How is your rash doing lately anyway? Any improvement yet?

 

I'll see if I can't scare up Prickly for you.

[squirmingitch]

Well, I have a little info. for you but not a whole lot. Prickly never used an ND for allergy or food sensitivity testing. The diet the derm put you on is an allergy free elimination diet & then you get to add foods back one by one to see if you react. I might add that you are back on topical steroids again so even if you had a bad flare, any dh biopsy would be a invalid.

 

As far as the ND & the food sensitivity testing.... there are people who believe & those who don't. Same thing for going to an allergist for allergy testing with the pin prick stuff.... it's up to you. I've seen lots of people go get tested & end up coming up with all kinds of things they are "allergic to" & then later they find out they aren't allergic to those things at all. I can tell you that testing will not tell you if it's gluten. Personally, I think that stuff is very flawed, just my 2 cents worth & that's why I've never been tempted to do it. But you have to make your own decision & do your homework. 

 

Keep us posted.

[BlessedMommy]

So frustrating! It seems like all the options out there for diagnosis are flawed. I hope that you find the answers that you're seeking. I am one who will always probably remain undiagnosed because I would not survive eating gluten for 2 months. My skin rash was clearly linked to gluten though.

[crazyitch]

My rash is basically the same on my legs and arm, but it has flared on my tummy again and this after severely restricting my diet.  I have not started using the steroid cream as the pharmacy has to send out for a compound, it is betamethasone mixed with aveeno or something like that.  I am taking doxepin, an antihistamine that I think, takes the itch from an unbearable 10 down to a just tolerable 6.  I have times in the day where it seems to go nuts and others when it is quiet. I know the rash wont be clear next week, so I don't know what the derm will do then. 

 

I am not staying strictly to lamb rice and pears, I just don't have that discipline in me.  I have added in herbal tea, black coffee, yams, fava beans, brussel sprouts quinoa and I cook my rice in almond milk with green curry paste and kaffir lime leaves.  I need some flavour!!  I am not having gluten dairy or soy. I have limited my salt to almost nothing. I am using some spices but I have googled hypoallergenic diets and the only thing that is a no no is black coffee.....forgive me this small pleasure, I may be a headline if I don't have my morning java!!

 

I am with you Ruth, the diagnostic procedure for this disease is severely lacking, I am surprised that in this day and age we cant come up with something definite and consistent to test for it.  I am going to continue with the gluten free thing and see what happens.  How long did it take you to be able to definitely tell that gluten was the culprit?  I am still having bad days where it flares and once the scabs are there it becomes a vicious cycle of itch/scratch/scab/itch/scratch/scab.......

[squirmingitch]

Aveeno = oatmeal. Oatmeal = gluten. Why? Because oats grow alongside wheat, mature at the same time, are harvested at the same time on the same wheat laden equipment & processed on the same gluten laden equipment in the facility. All of this = cross contamination.

 

We can have oats BUT ONLY OATS THAT HAVE BEEN GROWN IN DEDICATED FIELDS FAR FROM WHEAT & harvested using clean equipment & processed using clean equipment.