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Another Newcomer...and Test Results.

Lobstah

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Lobstah Rookie
Lobstah
Posted

About 3yrs ago I came down with a rash.  Light blisters on knees, elbows, collarbone, and base of spine.  You all know the story.

Dr. back in New England said some form of eczema or psoriasis, prescribed topical cream.

 

Having just moved to Florida 6mos ago, my wife and I scheduled physicals with a new practitioner near our new home.

Before seeing the new doctor, my rash had broken out on my face and back of my scalp, so I saw a dermatologist who prescribed a cream.

 

During physical with new doc, I brought up the rash.  She had a med student sitting in with her that day, and asked him what he thought it was, and his immediate response was "I think it's DH."  The doc took a closer look and said "Huh...I hadn't thought of that, but I do think you're right."

 

She ordered a celiac panel along with the rest of my blood work.

 

The results that came back high were:

 

10/07/2014 12:07 PM GLIADIN AB (IGA) 33 units H 0-19 CYNTHIA MILLER, MD   10/07/2014 12:07 PM GLIADIN IGG 37 units H 0-19 CYNTHIA MILLER, MD  

 

Based on that, she said "Yes...it appears you have celiac disease."

Years ago I was diagnosed with Barrett's, which requires regular endoscopies for monitoring.  I am due for an endo, so she said that the endo would confirm the diagnosis.

 

I'm going for my premeeting in a week so that the endo can be scheduled.  I have been gluten free since the initial diagnosis on 10/7...so not sure what the endo is going to show.

 

I have no gut symptoms to speak of, and yes, I realize that doesn't mean anything. 

 

Based on the IGO and IGG readings above, do you folks think this is a done deal?  I've read tons of info on the DH, and my symptoms sure seem to fit the descriptions...rash on elbows, knees, back of scalp, and upper buttocks.

 

I'm a fairly analytical guy, and have been troubleshooting things for 45yrs at this point, and as you all know, getting hard, scientifically based answers on this condition, and specifically DH, is a very difficult thing to do.  Very hard to separate the wheat from the chaf (pun intended) :)

 

If it is the IGA causing the DH, what's the general consensus on how long it takes to see the rash subside?  I've read posts where people have said it's almost immediate, and others saying the antibodies can remain in your system for up to 10yrs.

 

Thanks for any info...

 

Jim

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SMRI Collaborator
SMRI
Posted

Yes, It's a done deal.  If you didn't need the scope I would say skip it.  Generally they suggest staying on gluten until all testing is complete but you aren't going to heal in a couple weeks after years of damage..or you might just have light damage so far.  Either way, with the rash and the tests, welcome to the club.

nvsmom Community Regular
nvsmom
Posted

I agree, it is most likely celiac.  That DGP IgG is especially telling, the specificity of that is about 100% as seen Open Original Shared Link.

 

If the endoscopic biopsy shows nothing (it misses up to 20% of celiacs) you could always do a biopsy on the rash area.  To biopsy DH, a sample is taken from beside the rash... but I doubt you need more confirmation with two positive tests already. 

 

When they do the endoscopy, request they take at least 6 samples, the more the better.  That will make it more likely they will catch the damage.  You could also consider going back on gluten for the 2-4 weeks prior to the biopsy; that is generally considered to be enough time to create enough damage to be found.... I know,  it's not a gentle way to test for a disease is it?

 

Welcome to the board.  :)

Lobstah Rookie
Lobstah
Posted
  • Author

Thanks for the additional info.  I was pretty sure that was the case.

 

I've naturally read through a lot of the forums here and everywhere else, trying to get as informed about this as I can.

 

One area that seems to have a vary wide variance is sensitivity to and reaction to the ingestion of gluten.  There are so many factors, and many personal experiences are not really in a controlled environment, so it's hard to determine what the actual sensitivity is.

 

If I mistakenly ingest gluten, how long does it typically take for DH to flare up?  Is it that evening?...2-3 days?...a week?

 

And the second question is duration.  Some folks have said the antibodies can remain in the system for up to 10yrs.  Is that based on a scientific study?  It seems hard to imagine that someone could be absolutely certain they had zero contamination for a 10yr period.

Stated another way, if I get "bombed"...am I going to itch for a year?...more?...less?  I realize that a lot of this depends on just how sensitive the system is.

 

Thanks,

Jim

cyclinglady Grand Master
cyclinglady
Posted

Jim,

Have you gone to our DH section within this forum? You might find it helpful. Hopefully one of our DH members will catch your posting, but it has been discussed many times before.

I hope you get relief soon!

nvsmom Community Regular
nvsmom
Posted

I luckily have never suffered from dh so I can't comment much on that.  I know other types of gluten reactions seem to take 15 minutes to a few days to set in.  I imagine dh is similar but I really don't know.

 

Antibodies stay in the system for varying lengths of time.  Most celiacs test negative between  6 and 12 months, some are sooner and some are later.  I've heard of a few people who were still positive after 2 or 3 years but not many.  I think I remember one who was positive after 5 years.... very unusual.

 

Some people's dh clears up in weeks or months and others have it hang on in varying degrees for years.  I agree that you might want to look through the DH forum.  You'll find more answers there.

ravenwoodglass Mentor
ravenwoodglass
Posted

Thanks for the additional info.  I was pretty sure that was the case.

 

I've naturally read through a lot of the forums here and everywhere else, trying to get as informed about this as I can.

 

One area that seems to have a vary wide variance is sensitivity to and reaction to the ingestion of gluten.  There are so many factors, and many personal experiences are not really in a controlled environment, so it's hard to determine what the actual sensitivity is.

 

If I mistakenly ingest gluten, how long does it typically take for DH to flare up?  Is it that evening?...2-3 days?...a week?

 

And the second question is duration.  Some folks have said the antibodies can remain in the system for up to 10yrs.  Is that based on a scientific study?  It seems hard to imagine that someone could be absolutely certain they had zero contamination for a 10yr period.

Stated another way, if I get "bombed"...am I going to itch for a year?...more?...less?  I realize that a lot of this depends on just how sensitive the system is.

 

Thanks,

Jim

I had pretty severe DH at diagnosis. My DH started to heal within a short time of my going gluten free.  For a few months a DH flare would be the first sign I had been glutened. After time it became one of the last symptoms to appear. At this point, after 12 years gluten free I will only get a tiny blister that goes away quickly on the rare occasions that I get glutened.  Can't say it will be the same for you. 

I found it helpful to make sure my topicals like shampoos and lotions were all gluten free. Iodine can help keep the lesions active also so try to limit your use of iodized salt for a bit. Do add it back in after you heal though as iodine is an important nutrient.

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frieze Community Regular
frieze
Posted

i might have missed it, but that med student deserves a high five, at least.

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