I believe I have this! Serology tests all negative

[Elizabeth Butler]

On 10/5/2022 at 12:59 AM, Hb333 said:

I was just reading about bicalutamide... that may be better than spiro which gives me horrible leg cramps so i only do half a dose. 

I had to argue with my dermatologist that DH And celiac disease ( skin symptoms) existed. He said “it’s not real”. Needless to say I have common sense and never went back to that dermatologist. Ironically his last prescription cream ( I cannot remember the name but I remembered the price$$) was a “treatment for DH under NIH readings. It also could cause liver failure for certain genetics and he didn’t tell me that or offer testing so I didn’t use it.. I know it’s not ideal to treat one’s self or self diagnoses but when your on a budget and the healthcare industry may as well be kohls..these days only thing you can do is read read and read some more! 

[Hb333]

56 minutes ago, Elizabeth Butler said:

I had to argue with my dermatologist that DH And celiac disease ( skin symptoms) existed. He said “it’s not real”. Needless to say I have common sense and never went back to that dermatologist. Ironically his last prescription cream ( I cannot remember the name but I remembered the price$$) was a “treatment for DH under NIH readings. It also could cause liver failure for certain genetics and he didn’t tell me that or offer testing so I didn’t use it.. I know it’s not ideal to treat one’s self or self diagnoses but when your on a budget and the healthcare industry may as well be kohls..these days only thing you can do is read read and read some more! 

What was the cream so i can be aware? 

[Elizabeth Butler]

It was over 10 years ago. I don’t remember, I’m sorry. If I get a chance I’ll attempt to locate the name of it. I read the package insert like the nerd I am and that’s where I discovered the issue with the liver and genetics and that particular cream.

[Hb333]

Thanks to all. I received back DNA result from the test i purchased and it shows low risk for celiac.   .5% 

 

But not nothing. I can't get into this allergist to test for progesterone sensitivity until mid December. 🙄 So who knows? Lived with it 11 years.... I'm attempting to be gluten free and do feel better. Rash is better but spots/ scars remain and itching persists at night.  Dna result pic included if anyone can make more sense out of it. 

[trents]

The DQ2 gene is the one single gene most strongly associated with celiac disease. To this point in scientific investigation, there are known to be two main genes associated with celiac disease, DQ2 and DQ8. In my understanding, if you have only one of the two, the DQ2 gene indicates greater likelihood of developing celiac disease and greater sensitivity to gluten than just having DQ8 alone.

But you do realize, don't you, that even having both DQ2 and DQ8, there is a much better chance of never developing celiac disease than developing it? A high percentage of the population has one of both of these genes but never develops celiac disease. Having one or both merely establishes a potential for celiac disease. But not having either gene (supposedly) eliminates the possibility of developing celiac disease. But we are learning more all the time of the genetics of celiac disease and this eventually may be proven a false conclusion. Some research suggests there are likely more genes involved than these two.

So, it makes sense when you have celiac-like symptoms and the genetic potential for the developing the disease that you likely do have it.

Edited October 12, 2022 by trents

[Tracy414]

1 hour ago, Hb333 said:

Thanks to all. I received back DNA result from the test i purchased and it shows low risk for celiac.   .5% 

 

But not nothing. I can't get into this allergist to test for progesterone sensitivity until mid December. 🙄 So who knows? Lived with it 11 years.... I'm attempting to be gluten free and do feel better. Rash is better but spots/ scars remain and itching persists at night.  Dna result pic included if anyone can make more sense out of it. 

Would you mind sharing which company you did your testing through? I’m just curious. 

[sensitive celiac]

1. All genetic tests are not the same.  There are some designed mainly to amuse and to collect your data. They are not as accurate as medical tests.

2. 2% of celiacs have neither gene. 3. If you test completely negative, there is also non Celiac Gluten Sensitivity. 

If you have DH that would be a strong indicator that you have celiac. If you are already gluten free, the Average person must go on a 6 to 8 week gluten challenge to show positive signs of celiac damage. Some people have to go an additional 8 weeks and get checked again before they test positive.  

If you are already gluten free and do not do the challenge, the only assured way I can think of to get diagnosed is by biopsy of a DH rash by a doctor who knows what he is doing and takes a biopsy next to the blisters, not of a blister.  

[Hb333]

20 hours ago, trents said:

The DQ2 gene is the one single gene most strongly associated with celiac disease. To this point in scientific investigation, there are known to be two main genes associated with celiac disease, DQ2 and DQ8. In my understanding, if you have only one of the two, the DQ2 gene indicates greater likelihood of developing celiac disease and greater sensitivity to gluten than just having DQ8 alone.

But you do realize, don't you, that even having both DQ2 and DQ8, there is a much better chance of never developing celiac disease than developing it? A high percentage of the population has one of both of these genes but never develops celiac disease. Having one or both merely establishes a potential for celiac disease. But not having either gene (supposedly) eliminates the possibility of developing celiac disease. But we are learning more all the time of the genetics of celiac disease and this eventually may be proven a false conclusion. Some research suggests there are likely more genes involved than these two.

So, it makes sense when you have celiac-like symptoms and the genetic potential for the developing the disease that you likely do have it.

Trents - So you're saying because I have the DQ2 it is "possibly" celiac still? I realize these tests only show a propensity and are not diagnostic, only "potentially indicative of maybe."

Tracy- The test was RxHomeTest and tested specifically celiac related genes. It was on a recommended list somewhere. I realize some of the tests are gimmicks. This one seemed more professional. I already uploaded my DNA everywhere so I don't mind data collection. 🤣

Sensitive- That gluten challenge sounds awful if it IS celiac, in fact I did it this summer without even knowing it if it is DH. Hopefully I will have an active bump or two when I return to the derm. They're always popping up. Does non celiac gluten sensitivity show up the same on a skin biopsy as celiac?

[trents]

Yes, I am saying that. If in fact you do have DH then you have celiac disease for certain. Celiac disease is the only known cause for it. And we do have people report on this forum that their serology testing was negative but their endoscopy/biopsy was positive for celiac disease. Here is what you said in your first post, "I am convinced by the photos and descriptions of DH that this is still what I have."

Edited October 13, 2022 by trents

[Hb333]

36 minutes ago, trents said:

Yes, I am saying that. If in fact you do have DH then you have celiac disease for certain. Celiac disease is the only known cause for it. And we do have people report on this forum that their serology testing was negative but their endoscopy/biopsy was positive for celiac disease. Here is what you said in your first post, "I am convinced by the photos and descriptions of DH that this is still what I have."

Yes it sure sounds like it. But it's only on my back, ribcage, a bit on abdomen and butt/hips, never on elbows or knees. Apparently this rare "autoimmune progesterone sensitivity" DOES have dermatological symptoms that can mimic DH but the only way to tell is by a progesterone allergy test and I guess the allergist is just soooooo busy I won't know for months. In the meantime, I'll see if the derm can get me in for a biopsy now that I have all the info from this forum!

[knitty kitty]

@Hb333,

I have DH, negative serology and type two diabetes.  Diabetes,  anemia and vitamin deficiencies can cause negative serology.

DH is pressure sensitive.  It often forms under bra straps, under elastic bands (underwear, waistband), where seams of clothing presses on skin.  Elbows and knees can get lots of pressure, but DH can occur anywhere.

Iodine (iodized salt, shellfish, crustaceans, seafood and dairy) as well as gluten exacerbates DH.  

As said earlier, get a dermatologist who is familiar with testing for DH.

[Beverage]

I have Celiac's.  I have had a few weird rashes, but not tested for or diagnosed with DH. 

I got DNA testing through Genetrack Biolabs. 

Risk is same as yours, 1:210

          HETEROZYGOUS HLA-DQB1*02      1:210

I'm not sure what "HLA-DQB1*02" means .... DQ2?

 

[Hb333]

On mine it shows that and above that a chart saying DQ2 risk allele = yes.  If that means anything!!

[jc94jc94]

3 hours ago, Hb333 said:

On mine it shows that and above that a chart saying DQ2 risk allele = yes.  If that means anything!!

HLA DQA1 and DQB1 are 2 genes that come as a pair and we inherit one pair from each parent. Your results show you have DQA1*01:DQB1*06  which is HLA-DQ6 gene and you have HLA DQA1*02:DQB1*02 which is HLA-DQ2.2. DQ2.2 is a celiac related gene (DQ6 is not) so you cannot rule out celiac disease from your genetics. However you only have one copy and the DQ2.2 is quite a weak celiac gene compared to the main celiac gene which is DQ2.5. This is why the report is saying you are 'low risk'. That being said the only medical point to get the genetic test is to hopefully rule out celiac completely, and unfortunately you cannot do that!

Having DQ2.2 means that the proteins in your blood are shaped in such a way that they have the capacity to pick up gluten molecules in the gut and carry them round your blood, bringing the gluten molecules in close contact with the immune system. 

As others have said it certainly doesn't diagnose you with celiac - half the population has at least 1 celiac gene like you. And the fact you have a negative blood test suggests you don't have it. However if you are having symptoms then you should push for an endoscopy to see what is going on in the small bowel either way. Especially if you are still eating gluten at this point as it is best to get it out the way.

If you have stopped eating gluten already then the choice is up to you as it will be hard to start eating gluten and it may impact your lifestyle/job. However it will be even harder to go back on gluten in the future if you want to be tested officially.

Also worth noting you can still develop other gluten related conditions like non-celiac gluten sensitivity etc.

[trents]

25 minutes ago, jc94jc94 said:

Also worth noting you can still develop other gluten related conditions like non-celiac gluten sensitivity etc.

Or, already have NCGS if not celiac disease.

[Hb333]

It's been awhile since I posted. I have been dutifully gluten free and eating at home until the last few days when I went on a trip. During the trip I ate items I believed were gluten free but they weren't prepared by me and there were gluten containing items adjacent so I can't be 100%.

Background: I would develop itchy, tingly,  blisterlike, pimple-ish dots on my back for the last 13 years or so (I miscalculated before-- it started in 2009) which I thought were shingles. Long after the rash started appearing, the lesions were swabbed for HSV 1&2, and I got a blood test for HSV 1&2 and both were negative. In September, I had a bunch of them and showed a dermatologist I was seeing for acne and he thought it could be celiac. Blood tests all showed negative for celiac. Then 5 or 6 weeks ago, I had a skin biopsy which was also negative for celiac. However I ordered an online DNA test kit which showed I have 1 copy of HLA DQB1*02 or a .5% risk of possibly developing celiac.

After the skin biopsy, I started eating gluten free to "see what happens." The rash was gone completely with no new dots appearing about 4 weeks after being gluten free (recently).

Untillllllll this trip last Friday through this Monday and unknown if maybe I ingested gluten (I also had 1.5 Corona beers Friday). The gluten free rolls I ate were in a container with regular rolls and there may have been unknown gluten in other foods.

Starting late Monday- Tuesday, a whole new crop of blisters appeared on my back with more coming up today (Wednesday). They're clustered along my rib cage/bra line on both sides, a few in the middle and a few on lower back and shoulders. More on one side of my rib cage. The itching isn't as bad as other outbreaks but it preceded the appearance of the blisters. And... I tried to get pictures. Could it be celiac/DH despite all these negative tests and .5% risk factor? Sorry pics are not that great but it shows the larger blisters on my back. 

Side note: I had been taking doxycycline for acne for 2 months and that rx ran out right before the trip. I take 50 mg of spironolactone daily for acne and use tretinoin. My skin had never been so great. Until whammo- mysterious ugly rash is back!

[trents]

@HB333, can you be more specific about what serology tests you have had done for celiac disease? Many doctors will only run the tTG-IGA which misses about 20% of people of white European decent and 80% of people of black African decent who do have celiac disease as confirmed by biopsy. There are a number of other serology tests that can be run to detect celiac disease and the value of that is that one may catch what another misses: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

Not everyone's immune system responds the same way. You have many signs of celiac disease IMO.

[trents]

The other thing that needs to be asked is, and forgive me if this ground has already been covered, what was the timing of the serology tests in relation to your efforts to avoid gluten free? When gluten is removed from the diet antibody numbers begin to decline because healing of the small bowel villi is occurring. Prior to a serology test for celiac disease, the Mayo clinic guidelines are the daily consumption of two slices of wheat bread (or the gluten equivalent) for 6-8 weeks.

Also, many dermatologists make the mistake of biopsying the blisters themselves rather than the skin next to the blisters.

Edited December 8, 2022 by trents

[Hb333]

He definitely biopsied the area adjacent to blisters and told me as he did so. The serology tests, I was not gluten free and had never heard celiac as a possibility so I got the test that day.  I wasn't on a gluten challenge but ate bread every day and had many blisters at the time.

Blood test 9/20, had been eating gluten,  all shown tests negative

Biopsy 10/20, negative

9/28-10/26- limited gluten but was still getting a few blisters

10/26-12/1- gluten free after receiving DNA result electronically

I had such great results until eating on that trip I didn't want to try to do a challenge. Does the rash pictured look like DH?

[trents]

I'm no expert on DH so I won't comment much on your question but I understand it has characteristic blisters that set it apart from many other skin outbreaks.

[Rogol72]

Based on my experience with DH, it occurs on both sides of the body at pressure points on the skin ... so the elbows, knees, hips from clothing etc. The blisters cluster together and are clear and watery. I initially had what was thought to be eczema on my back which didn't respond to steroid cream. It was biopsied and came back positive for DH. The symmetrical itching and blisters on the pressure points appeared later.

[shadycharacter]

On 12/8/2022 at 8:18 AM, Hb333 said:

Untillllllll this trip last Friday through this Monday and unknown if maybe I ingested gluten (I also had 1.5 Corona beers Friday). The gluten free rolls I ate were in a container with regular rolls and there may have been unknown gluten in other foods

Was the beer gluten free? I understand Corona contains barley, so it's not completely gluten free. If you normally don't get symptoms from that beer, it could have been something else, or perhaps how traces from several sources, including the beer, added up. According to this link Corona isn't gluten free:

https://wheatbythewayside.com/is-corona-beer-gluten-free/

[Lobstah]

On 9/25/2022 at 1:01 PM, Hb333 said:

The best diagnosis i heard was flea bites. I was convinced it was shingles and had to beg a few docs for anti viral which didn't touch it really. My back itches all the time. Thank you for this information. My dermatologist is pretty cool. I'll ask him this! Is there info you can provide on the diet? I know even supplements can cause it. I have been taking an otc vitamin D a lot. Wonder if the casing has gluten. I also get BV. 

I believe that shingles only present on one side of the body.  DH is bilateral.

[Scott Adams]

Definitely switch to a gluten-free beer, and if you have DH you should probably even pick one that is made with gluten-free ingredients and excludes barley:

 

[Grammy9]

Your pictures look exactly like my rashes. I am definitely celiac and my main reaction is rash. Since I have been gluten free three years now sometimes the out break is very mild is amount but not in intensity. I may have only 3/4 lesions but they kill. I had an allergy skin test done which included wheat and it came back negative and I just laughed. The best relief I have experienced has U-Lactin lotion. It relieves the itch and pain and starts the healing. I also have remaining scars. I am also lactose intolerant which I’m told is common with celiac disease and that gives me stomach distress. Bloating. Pain. I used to think that those symptoms were the celiac and couldn’t figure what gluten I had eaten. Anyway. I hope the U-Lactin helps you also.