Rash Mimics Dh But Not Celiac

[chrisgf]

hello,

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!

[GF Lover]

Have you had your rash biopsied?

 

Colleen

[chrisgf]

no I have not yet, but since I was negative for celiac in all the other tests, this cant be dh right?

[chrisgf]

oops I think I replied to my own post lol....

 

colleen, if tests were negative for celiac, then this shouldn't be dh right?

[GF Lover]

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.

 

Colleen

[squirmingitch]

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.

[squirmingitch]

I edited my post above so go back to make sure you read all of it please. Thanks!

[chrisgf]

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 

[chrisgf]

too funny I just got labs in mail....

 

deamidated gliadin peptide antibody, IgG (DGP IgG)  is 1.3 EU/ml  range says <4.9 EU/ml

"                                                       "  IgA (DGP IgA) is 1.3 EU/ml    range says <6.1 EU/ml

anti human tissue transglutaminase IgA ELISA (TTG IgA) is 0.3 U/ml     range says <10.3 U/ml

anti endomysial IgA, IFA (EMA IgA) is negative

total serum IgA by nephelometry (TOTAL IgA) is 166mg/dl  range for my age of 37yrs. is 44-441mg/dl

 

it says celiac risk haplotype not detected

DQ2-, DQ8-      risk is <0.1x which is extremely low

 

so, this shows I don't have celiac....and I guess the rash is just some rash I get with gluten.  doc wrote on this paper saying I have gluten intolerance

 

I honestly have no clue what all those numbers and names mean...but thank you for your help

[squirmingitch]

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). 

[squirmingitch]

Oh, wait a minute! I read your post wrong about the gene testing. I don't understand..... it says no haloype detected yet doesn't state what your genes are?

[chrisgf]

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

Does this mean I have both types but at low risk?

[squirmingitch]

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.

[GF Lover]

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.

 

Colleen

[squirmingitch]

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:

http://www.uchospitals.edu/pdf/uch_007936.pdf     which says...

This means that people with DQ2 or DQ8 can develop celiac disease,  

 

Also see:

http://celiac.org/celiac-disease/diagnosing-celiac-disease/screening/  scroll down to the heading "Genetic testing".

 

So here's what we have to go on.:

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.

[chrisgf]

Thank you both so much!

 

as for the genes with the minus sign...it was my error...on my lab it shows it like this            DQ2-, DQ8-    I thought that meant "negative", but they would usually be in front of the letters....right? lol  I honestly have no clue....this column was under the heading "overall risks for patients carrying the DQ genotype"...the levels go higher and the highest one is DQ2Homozygous.  my gene is at the lowest end

 

                       so does this mean I have the gene, but at low risk?  I sorry if I ask a lot....I am frustrated over all this and just want my body to be normal again.  I don't see my gi doc until june, so I will have a lot of questions to ask him. 

 

I think I am just going to continue my gluten-free and df diet...since I know both make me miserable

[squirmingitch]

Hmmmmmm.... I don't know if the minus would be before or after. Can you perhaps scan that & post it here? You can black out your personal info so we don't see that part.

 

Don't worry about asking lots of questions! That's what Celiac.com is about. I feel your frustration. I'm so sorry. I know you just want to feel good again & wonder if you ever will. (((HUGS)))). I think you're making a wise decision to stay gluten-free & df. We have a saying.....

If it makes you sick, don't eat it.   So simple but so many have such a hard time doing just that. 

You can try in say 6 months to introduce dairy back in. Keep a food log so you can track things. Try one type of dairy at the time for 1 week each before you introduce another. If all dairy is still out then wait another 6 months & try again. Often, people can tolerate yogurt b/c it carries it's own probiotics with it. Have you tried that? I worry about you getting enough calcium for your bones. Maybe you can try a calcium supplement?

[greenbeanie]

Hi there. I've been following this thread but didn't post earlier because I'm not sure how helpful this will be, but I have a somewhat similar situation (and a partial solution that's helped me): I'm also negative for DQ2 and DQ8, though I have the alpha allele of DQ2.5 (and beta alleles of DQ5 and DQ7). Ignore that detail if it doesn't make sense - the genes stuff is complicated and not really relevant to my point. I had tons and tons of celiac symptoms since my teens (I'm 38 now), including diarrhea 4-6 times per day for 20 years, horrible itchy, blister rashes since I was five years old, and neurological symptoms as well. My daughter has biopsy-confirmed celiac. Some of my other symptoms are listed in my signature.

Anyhow, I've been strictly gluten-free for about 10 months now, along with my daughter. Almost immediately the diarrhea, esophagitis, gastritis, insomnia, and irritability started to improve. The balance and coordination problems took longer, but within six months I had major improvements there too. I'd been very lactose intolerant for over 20 years, and suddenly I could eat dairy again after about 9 months. All in all, these were astounding improvements! (And inexplicable too, since my celiac tests were negative - and the improvements in my health were just as dramatic as my daughter's.) My rash also improved a lot at first, but then it actually got WORSE again, especially on my scalp. I changed shampoos a dozen times and used all gluten-free products, yet the rash kept getting worse. Oh, and my tongue had swollen up during my gluten challenge too, and hadn't gotten much better after I stopped gluten. This was also puzzling.

It turns out that I'm extremely sensitive to sulfites. Many gluten-free products are high in sulfites (at least in the U.S.) because they include potato starch flour and tapioca flour, which are bleached with sulfites. You can't usually tell from labels if sulfites were used in processing, since they not considered "ingredients" that must be listed on labels. I also react strongly to sulfites that occur naturally in all fermented foods, anything with vinegar, lemon juice from concentrate, pectin, cheese, dried fruit, and a whole bunch of other gluten-free things that I was eating every day. I had actually started eating MORE sulfite-containing foods that I ever had before because I'd started baking things with tapioca and potato flour at home. I also have a sulfite reaction to many brands of probiotics (from the fermentation, I guess), though I can tolerate some brands. And some brands of bottled water actually have sulfites added too, which was adding to my problem because I drank bottled water from a big dispenser at work.

As soon as I figured out that sulfites were the problem, the rash went away completely. The oozing blisters on my scalp and elbows disappeared within days. If I slip up even a little - for instance, by having a little bit of salad dressing once a week - the scalp rash comes right back. So for the time being I am on a gluten-free, low-sulfite diet and I feel great. It is extremely restrictive, but I'm hoping I'll be able to tolerate a moderate amount of sulfites again after my body calms down more.

Your comment about a reaction to gluten-free pizza dough caught my attention, since frozen doughs are often high in sulfites (they're also used as a dough conditioner). Perhaps sulfites are not your problem at all, but it's worth a try to see if it helps with the rash. My rash was never biopsied because my doctors stopped considering a gluten problem when my genetic test came back negative, so I really don't know much about that process. But if sulfites are causing or worsening your rash, I'd think it would be really obvious within 2-3 days trying a low-sulfite diet. It certainly can't hurt to try. I don't have the bookmark right now, but you can find lists of sulfite foods online pretty easily. If you give it a go, though, make sure to avoid ALL fermented foods, spice mixes, vinegars, etc. - not just things with sulfites added as a preservative. I was eating almost no foods with preservatives and still had a huge reaction to much smaller amounts of naturally-occurring sulfites. Good luck!

[squirmingitch]

greenbeanie, so your daughter is dx'd from positive blood & endoscopy. You are negative for genes. Has your daughters father been gene tested? I ask because your daughter HAD to get the genes from somewhere & if not you then your hubs. If your hubs is negative then something has to be wrong with your gene test. Of course, 1/3 of the population has celiac genes so there's a good chance your hubs has one or more but I was just wondering..... 

[greenbeanie]

greenbeanie, so your daughter is dx'd from positive blood & endoscopy. You are negative for genes. Has your daughters father been gene tested? I ask because your daughter HAD to get the genes from somewhere & if not you then your hubs. If your hubs is negative then something has to be wrong with your gene test. Of course, 1/3 of the population has celiac genes so there's a good chance your hubs has one or more but I was just wondering..... 

 

My daughter was conceived in a non-traditional way (with medical intervention), so we do not have full info about the other half of her genes. She didn't have the gene test herself because her celiac diagnosis was so clear. I am still extremely skeptical about my own test results, but at this point it doesn't make much practical difference. I'd certainly remain gluten-free at home anyway, for my daughter's sake, and pretty much all restaurant food contains seasonings, dressings, flours, or fermented things with sulfites. I do believe that someday a biomarker for severe NCGI will be found that is especially associated with rashes and neurological reactions to gluten, and maybe then I'll get a clear diagnosis at last!

[squirmingitch]

Ahhhh, I see. Thanks greenbeanie for the info.. I agree with you about the biomarker for NCGI & will even go so far as to say that one day we will have a way to dx celiac disease without the need for glutening oneself. Oh, won't those be happy days? Happy, happy days!

 

Well, once again we're back to that saying --- if it makes you sick, don't eat it. I'm glad you follow that.

[chrisgf]

greenbeanie....thanks for responding.  I never thought of sulfites before...but it sounds like there are people like your self that cant have it or need to limit their intake of it.  right now I am at a point of just giving up.  there is so much info out there about celiac and gluten intolerances that I am overwhelmed.  I had joined a gluten support group back in October...its been the best.  when I tell my story of the past five years of symptoms, they all said it sounded just like celiac.  I told this to my gi doc to who knows about celiac and he also felt that's what I had...until I got all these tests done.   he wrote on my lab that I am negative for celiac because of genetics test, so that I am gluten intolerant instead.  of course not eating gluten has helped me a lot...

 

I wish I had the answers to what I need...with my symptoms, especially the rash, I just feel that its celiac.  the rash is my biggest problem...I want to stop itching once and for all! lol

 

I suppose I will never understand my labs...but I appreciate all the wonderful replies to this...

[squirmingitch]

Chris, please don't give up. I know it's rough. Stay with your support group ~~~ they will help you & you need the support.

 

When you see your GI, make sure to tell him you had been gluten-free for so many months & only went back to eating gluten about 13 days before the tests. 

Your lab bloods don't mean a thing since they are invalidated so don't bother trying to understand them. The gene test --- make sure & ask your GI to explain that to you.

 

One thing you can do to see if you get any relief from the rash is to go low iodine. See thyca.org for a low iodine diet. You're already most of the way there since you're dairy free (dairy contains lots of iodine). Iodine makes many of us with dh flare horribly & many have had relief from going low iodine for  2 weeks or more. 

[chrisgf]

squirmingitch....

 

I have done the food diaries  before, which what showed me that dairy didn't agree with me...I am going to give it a while longer to see how clear the rash becomes...that way maybe I wont have to stop iodine foods.  I never heard of that as a problem with people...seems like a hard diet to stick to.  I have a lot of questions for my gi doc when I see him....I just hope he is helpful and doesn't make me feel like I am just going crazy in my head...I know how I feel when I stay on a df and gluten-free diet...it is great!  as for the labs....I have no clue....to me it looks like I have the dq genes and am at the lowest level to probably have celiac.  the rash to me is dh...I felt that from the beginning...it mimics it so well.  hopefully I can get thru easter with no cross contamination because I really don't want to be sick

[squirmingitch]

It sounds so much like dh to me. The bilateral "echo" is a real clue. The type of itching you describe, that it goes haywire (as if i doesn't go haywire all the time anyway (smirk)), the way it presents, how you react when you eat gluten. It all adds up.

Okay, you don't have to stay with the low iodine diet. Most people find they can do it for 2 weeks & things improve dramatically. That was not the case with me however. But we are all different. But if you don't want to do it --- no problem, that's your choice. However, I will say that if you eat seafood & especially shellfish, & notice a flare, then you know the iodine got to you (barring a shellfish allergy of course) and you would also know that it is dh. Several of us have researched & can't find a single rash or skin condition that presents like dh that is also sensitive to iodine. Only dh has this sensitivity. Now remember, not every person with dh has problems with the iodine. This is sort of a test you could do to assure yourself it is dh. Eat lots of shellfish. If you don't react, then it doesn't mean it's not dh but if you do react then you can settle your mind it is dh. But you will pay the price in a flare up. Yeh, I hear you!  There was no way I wanted to itch any more than I already was either! It's your choice.

 

It sounds like you've been reading threads on here --- if not then do so. Even so, I will repeat this:

DH can & will & does flare even when one is eating strict gluten-free. And it can do that for years. There is no rhyme or reason & it will make you bonkers. No point in trying to figure it out or try to make sense of it --- you'll go crazy trying. This is why it is imperative that you be absolutely pristine in your diet. No taking chances of any kind! No eating out at restaurants, take no chances on getting cc'd. It's a hard line to walk but harder is dealing with the insane itch. I'll take dealing with a pristine diet any day over the suicidal itch!!!!!