I am new to this site and this is my first post. I have been dealing with joint pain in elbows, anemia, sick stomach, and this unbelievable rash. after many doc appts, I ended up seeing a gi doc who knows about celiac. I have done an endoscopy and tons of blood work which also includes the celiac panel test from a lab called Prometheus in California. everything came back normal...however...I have some doubts. the worse part about all of this is that the rash is so so bad. its the worse symptom I have...taking gluten out of diet helps a lot...but the rash takes a long time to disappear. this rash mimics the exact thing as the "gluten rash...dh" but I thought this was only if you had celiac. everything is the same: itchy rash, pimples together and more come up as other ones heal, clear fluid comes out, my skin is discolored after it starts to leave, and the locations are always the same on my neck, under chest area, lower back, inside of elbows, behind knees and near belly button. I really don't know what else this could be...if anyone knows I would appreciate all the help I can get. thanks so much!
It is my understanding with DH that the antibodies deposit under the skin, causing DH. Some Celiacs with DH have no other symptoms. If is also my understanding that there is a higher negative rate of endoscope biopsies and blood work. The biopsy of the skin is taken adjacent to the lesion.
I"m gonna shoot a message to SquirmingItch for you, she knows everything about DH.
HAVE A SUPER SHINY DAY
LTES gem 2014
*BiPolar, Major Depression, Anxiety *Hypothyroidism, *Celiac
I don't know everything about it but I know a good deal. You're embarrassing me Colleen.
Okay, down to business. 60% of the time, those with dh test negative on the celiac blood panel. That brings us to the question of whether the doc even did the full, current blood panel. You should get your test results from the doc & compare them to this:
this is the current FULL celiac blood panel:
Anti-Gliadin (AGA) IgA Anti-Gliadin (AGA) IgG Anti-Endomysial (EMA) IgA Anti-Tissue Transglutaminase (tTG) IgA Deamidated Gliadin Peptide (DGP) IgA and IgG Total Serum IgA
The DGP test was added recently to the full panel.
Also can be termed this way:
Endomysial Antibody IgA Tissue Transglutaminase IgA GLIADIN IgG GLIADIN IgA Total Serum IgA Deamidated Gliadin Peptide (DGP) IgA and IgG
And you will need the ranges from the tests or nothing will make any sense.
Okay, on the endoscopy --- those with dh still get damage to their villi but it tends to be patchier. Equate that to harder to get a biopsy for when you consider the intestine, if cut open & spread out would cover a tennis court. That's a great deal of territory. The min. recommended # of samples for celiac biopsy is 5 or 6 -- I can't remember which but if one has dh -- IMHO, that # should be higher.
AND I CAN NOT STRESS THIS ENOUGH!!!!!! YOU MUST BE ACTIVELY EATING GLUTEN FOR ANY OF THE TEST FOR CELIAC!!!!!!! That means for the blood panel, for the endoscopy & also for a dh biopsy. Not gluten light, not a cracker on the day of the test but a FULL gluten diet AND if you had been off gluten for any time then you need to have been ON gluten for 2 months before the tests. Otherwise you get false negatives.
Okay, is this rash bilateral? Appearing on both sides of the body --- ie: both hands, both arms, both whatever.
Explain what you mean when you say pimples please.
If you have dh then that is a dx of celiac disease --- no further tests required & it's the best way for people with dh to get dx'd. Colleen said it right when she said the skin biopsy is to be taken from a clear area adjacent to an active lesion NOT ON the lesion. The biopsy is stained with a special dye & the dermatologist MUST put on the lab order that he is looking for dh otherwise the lab won't know & won't treat the biopsy correctly.
It sounds like you could have dh but the pimples part throws me & I would like to know if this presents bilaterally.
you so seem to know a lot about this ...lol which is good
I started a gluten-free diet sept 28...by my own choice cuz my allergist doubted it was gluten...my food skin test was all normal. a while later I noticed my coffee creamer made me nauseous and then other foods like my gluten-free cupcake and gluten-free pizza made me sick...so I stopped all dairy. this made me feel so much better ,so I began to test myself, and of course was sick and the rash was hitting me hard. the rash itself doesn't appear at first...my skin itches like crazy and then later the rash starts. I wouldn't say pimples...not really sure how to describe it other than red bumps and some looked fluid filled. they definitely are symmetrical on me...backs of both knees, inside both elbows, across my top torso under my chest from one side to other, both sides of neck (but sometimes just one side), and on the crease area of butt ( but again more on one side for this too). the joint pain in elbows is both as well and was extremely painful where I couldn't pick anything up out of my purse....it was tuff. my allergist said it sounded like I had rheumatoid arthritis...
before I went for endosocopy and bloodwork, I went back on a gluten filled diet for about 13 days...
after all my results came back normal, I assumed I just had a gluten intolerance. I don't see my gi doc till june. so since I wasn't confirmed with celiac, I tested myself four weeks ago and took two bites of something that had gluten...needless to say, rash came back, and I still have it now but finally seems to be going away....slowly...
I called doc yesterday to send me lab results so I am waiting for those. I have so many doubts, but feel like I am going crazy cuz of this rash that is horrible...sometimes I think its not dh,....other times I not sure...
besides those symptoms I gave above, I would also itch all over from head to toe, mostly on back, thighs, and tops of feet....but no rash there at all. I would wake up in middle of night itching forever and using a back scratcher to help me....I aslo have been using hydrocortisone cream to get some relief...not helping to much. when I stop gluten, that invisible rash/itching stop within two days which Is great...the rash on other areas stays foever tho
I gave Colleen a holler about the bloods --- others are better at that than I. BUT, BUT, BUT, 13 days is not enough time back on gluten after being off it since late Sept. So the tests are false negative; at least I would bet my hat on it with a 99% chance of being false negative. Dairy doesn't make non celiac gluten intolerant people sick --- it's celiacs who get the villi damage that makes them not be able to tolerate dairy.
As to the genes..... there are those who have that same gene split who have celiac disease.
What you describe sounds like dh. I too had trouble with dairy after I went gluten free. Weird right? Never seemed to have trouble with it until I went gluten-free. That's sort of common though with celiacs. It's kind of like, take away the gluten & the body gets a chance to recognize what else is upsetting it whereas before, it was too busy battling gluten to have time to register much else.
Again, it sure sounds like you're describing dh. I know the invisible itch too. The further down the line I went still eating gluten, that invisible itch became productive in that after 12 to 24 hours of itching, it would finally produce blisters (I've had the blistering kind of dh).
On the paper it has a box that says at the top "overall risks for patients carrying the DQ genotype". Then there are columns under it in categories ranked from 8 ( extremely high) down to 1 (extremely low). I am at number 1... And shows what DQ genotype I have... Mine in this column shows DQ2-, DQ8
I don't understand this at all. DQ2 & DQ8 are the celiac genes.
This makes no sense.
Maybe Colleen can call in some troops to look at this.
I'm in the middle of switching computers & trying to get all my info. migrated over to this new one plus a learning curve b/c this is a Mac. All my reference material is over on the other computer yet & I hate to use it for anything until I get all my stuff moved b/c it is dying, dying, dying. I haven't had a chance yet even to get my bookmarks set up on this computer yet. Had to get a new printer too. I'm overwhelmed with learning right now & frustrated without being able to access much of what I relied on for info.
But don't go away, keep checking in when you get notifications. We'll get this figured out.
Your Blood work is definately negative but eating gluten for 13 days, it is not unexpected. 8-12 weeks for a gluten challenge. Also you cannot use steroid cream if you want to get your skin biopsied, it will give a false reading. The report reads funny about the gene information. If you don't have the genes, you can't have Celiac. That is what the current peer reviewed research says. I would definately call the doctor office to clarify that. At least the then you can make an informed decision going forward.
HAVE A SUPER SHINY DAY
LTES gem 2014
*BiPolar, Major Depression, Anxiety *Hypothyroidism, *Celiac
I think I have the key. In your last post Chris, you put DQ2- (note the minus sign) and DQ8 which has no minus sign beside it. If that is correct, then my interpretation is that it's saying you do not have DQ2 gene but you do have DQ8 gene. You don't have to have BOTH genes to be celiac but the probability goes down if you only have one. See:
Your blood panel is invalid because you were not eating gluten for at least 2 months prior to testing, the same thing with the endoscopy.
Anemia --- was this found in a test? Verified that you are or were anemic? Classic celiac disease symptom.
The rash you describe sounds like dh for sure.
You DO have one of the celiac genes so celiac IS a possibility & can not be ruled out under the circumstances.
So, where do you want to go from here is what you want to ask yourself. How badly do you want/need an official dx? Because if you REALLY want one, you're going to have to eat a full gluten diet for at least 2 months, not using any oral or topical steroids either. Then you can go to a derm (let's hope they know what they're doing & that's a long shot) & get a dh biopsy. All the time you are eating gluten, those antibodies can build up in your skin & they don't go away overnight when you stop eating gluten as you are already well aware.