Could it be DH?

[Chemist89]

Hey guys,

first of all I wanna apologize for my English, I'm Italian (living close to Milan), so I'm not a native speaker and it will be particularly difficult to talk "medical" for me.

I have always had lot of intestinal issues, always thought it could be related to IBS (constant diarrhea, gas, acne, tiredness, abdominal pain). In the past two years tho, I started to have some weird rash on my left arm (inner elbow) ALWAYS showing after eating some particular foods (some detected and avoided, like McDonalds', some unknown). From the very first rash to now I have experienced some unusual conditions and had some abnormal blood test results:

- extreme low level of vit D;

- TSH out of range (4.24 against a max of 4.00) and my doc said it is very sensitive so you can't just say "it's just 0.24);

- 6 month of telogen effluvium (which is like hair shedding in autumn, but that is physiological. Mine started as usual, but didn't stop in 1/2 months. Luckily it wasn't hard and it is passed);

- 2 episodes of extreme painful abdominal pain, in the left low part. I felt like I had a "small painful ballon" in there

 

On Sept that rash started to get worse and worst. At the very beginning it spread on my right hip, then on my arms and in my inner thigh ending up on my hands, looking like a sort of eczema with some little blisters. it itches like hell.

I have seen not 1, not 2 but FIVE dermatologists ending up with all different diagnosis and all different prescriptions: worthless to say I had no results.

The last dermatologist told me it could be atopic dermatitis (even if I had nothing in childhood, so it'd be extremely unusual) and prescribed me some blood test: total IgE were normal (28.8) so I'm not allergic and she said I'm not atopic either. So her diagnosis fell.

 

I started believing my eczema/rash/dermatitis isn't the main problem, but a symptom. I spoke to my GP and ask him to see a Gastroenterologist.

So the doctor talked about SIBO and LGS as the possible cause of eczema and prescribed me some drugs. But due to my symptoms he wanted me to do a gastroscopy (with duodenal biopsy) which I'll run next monday and also a colonscopy. So he thinks I could possibly be celiac.

I have been thinking about it since then and was looking for some pics of herpetiform dermatitis on the internet, but on the italian websites I can't find that much about it (too generic images), so I started browsing on you sites and found some interesting that are similar to my rash, that's why I wanted to post it and have your opinion!

I know I just have to wait 2 more days for the gastroscopy, but I'm getting paranoid over this dermatitis and I wanna find an answer, even if it is celiac disease.

NOTE: in the pics it seems less wide and irritated, dunno why. I had a really bad episode 

 

 

 

 

[squirmingitch]

Hey Chemist! Your symptoms certainly indicate you need to be checked for celiac disease. Did the doctor say how many biopsies he would be taking? I hope 4 to 6, preferably 6. So none of the docs have done a celiac serum (blood) panel on you? IgE is not a celiac panel - it's strictly for allergies. 

Okay, your rash could be or could not be dermatitis herpetiformis (we just shorten it here to dh). We have a dh section. You can go read lots of threads there.

Before I forget..... you ARE still eating gluten every day aren't you? You MUST for the endoscopy or you can get false negatives.

Back to the dh. Since you've been to so many dermatologists & tried everything under the sun; it's sounding more like dh when considered along with your other symptoms. Have you taken any oral steroids or steroid shots in the last 2 months? Those can skew your biopsies as well as blood panel. Celiacs with dh test negative on the blood panel 60% of the time but still have the gut damage although it's generally patchier. The quickest way to get a dx is to get a dh biopsy. A dx of dh IS a dx of celiac disease. The biopsy is taken from clear skin ADJACENT to a lesion NOT on a lesion. 

Hallmarks of dh are bilateral presentation. In other words, it appears on both sides of the body in the same locations such as both thighs, both ankles, both forearms. That is not to say that it never appears without echoing on the other side of the body but most often it does echo. It itches like MAD!!! Keeps you from sleeping. It may also sting & burn along with the itch. Generally celiacs with dh have fewer, milder gut symptoms than celiacs who do not have dh.

If you don't get a positive from the endoscopic biopsies then pursue getting a dh biopsy. 

Please keep us posted as to what happens.

[Chemist89]

Hey squirminitch,

THANK YOU SOOOO MUCH for your answer!  It is really helpful.

I did checked IgA and Ab, but both resulted ok. It was one year ago tho, at the beginning of skin synthoms which, as said, were mild and lasted ONLY couple of days. that's why I think it couldn't be celiac disease. 

I also had 4 episodes of fever in 3 months. 

And yes, i took prednisone less than two months ago! -.- didn't have any effect tho. 

 

I will tell the endoscopist to take at least 6 samples and will see! 

 

[Awol cast iron stomach]

Your rash looks familiar to what I get on the back of my arms and front of my upper legs  when eating gluten or exposed to gluten. The back  of elbow rash I get is more red and the pustules are larger and more fluid filled it burns and itches terribly. I even itch in many  areas of my body without skin eruption and I get extremely dry patches as well. I personally believe all the above are skin manifestations of gluten issues. I had a series of prednisone steroidal cream history for years for my skin. Avoiding gluten and corn clears my skin better than any cream can.

As squirming says if you are presently eating gluten continue to. Some of us have been missed repeatedly and slip through the cracks in the medical world longer than we ever like and are forced to give up gluten to save ourselves and it's an unfortunate situation. I hope your diagnose is swift  and you can move on to healing quickly. You found the right website to help you once you finish you diagnosis journey.

It's good you and your Dr are on this right away that is the best clearest path to diagnosis and healing. Once that's in the bag I'm sure you'll find clearer skin days are ahead it may take months or a year be patient.

Good luck

 

 

[squirmingitch]

Chemist,

 

You're welcome!

Did you take the prednisone for a long time period? When did you last take it?

Are y'all allowed to get copies of your labs & pathology? If so, then start making it a habit to get them & keep them for future reference. Here's the current, full celiac 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 

 

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

 

One thing I want to point out in light of your blood test a year ago is that celiac can present at any time in life. Perhaps a year ago was too early for it to show in the blood work, then too, since you weren't given the full panel we don't know if you would have shown positive on the DGP portions OR the EMA. And again, I will repeat that if you do have dh, 60% of us test negative on the entire celiac blood panel. In short, it all combines to still leave a lot of questions in your case.

Also I will add that the dh rash can come & go seemingly at will. You see, the celiac antibodies get deposited under the skin. They lay there like little land mines just waiting for something to set them off. It's a maddening thing to have b/c you can either be actively eating gluten OR being strict gluten free & the rash can present OR NOT over & over & over again. It will make you crazy! Until those antibodies get out from under the skin, you can have a flare at any old time. No, no one can say exactly how long it takes for them to get out from under the skin. We are all individuals & that question comes under that "individual" disclaimer. It can take years. Some medical references say up to 10 years, some say for life. I do know that the rash is ultra sensitive to the tiniest amount of gluten so when one has dh they have to be extremely careful not to get cross contaminated. 

[Chemist89]

Hey Awol cast iron stomach, thanks for your answer!

I do have some red dots on my elbows too, but they're not fluid filled. I get blisters only on my hand and fingers (starting on my foot too, but only a few). As you I do get itchy in spots where I don't have any rash (sach as my shoulder) and it's extremely annoying.

I really don't know. This is really my final step and, to be honest, deep inside me I don't think I'm celiac. Don't know why, maybe cause I do not have diagnosed cases in my family history. But I couldn't explain my issues in other way: it could have been just IBS, but this dermatitis? I'm not allergic, I wouldn't have 28.8 of IgE. Then why I used to get rash after eating some foods and now it got worse, spread all over my body and it's persistent? 

 

Dear squirmingitch, your answer are SOOOOOO appreciated and full of precious informations, thanks a lot.

So, here in Italy we always get a copy of labs & pathology. I checked the blood test mentioned, on 11/2015 I got tested for immunoglobulin IgA reflex and anti-transaminase ab IgA reflex and both were ok. For the italian protocol, as an adult, I'm (or was at the time) considered not celiac. I only had low level of vit D (10 while the minimium is 30, so it's reported as sever insufficient), low level of folates (not that low, but I wanna shate this cause I've read it could be related to celiac disease) and TSH at 4.21 (now it's down to 2.20).

 

I took prednisone for 10 days, more than a month ago. No benefits on me! 

[squirmingitch]

Okay, then the prednisone should not now skew your endoscopic biopsies. That's great that you guys get copies!!! Yay! Your low Vit D is telling as is the folates and your thyroid. Have they done a complete thyroid panel on you, including checking for Hasimotos? 

Reading your last post reminded me of something. VERY often those with dh will get a burning or itching or stinging sensation 12 to 24 hours prior to a lesion showing up. You'll look & there is nothing, absolutely nothing there yet you keep reaching to the area because you are feeling something. Pre diagnosis, pre any kind of knowledge about it, I used to ask my friends if they ever got areas that itched or stung but there wasn't anything there. They would look at me like I'd grown 2 heads and reply in the negative. Sometimes nothing would ever show up there (that was in what I think of as my early days of the rash). Sometimes I would get a place 12 - 24 hours later. It took me a while to put that together especially since it didn't always happen. As time progressed, the frequency with which a lesion did show up after that sensation increased.

Well, not long for you to wait now. You are getting your procedure on Monday? One more day for you if I'm correct. 

[Chemist89]

OMG, look at the 2nd picture I posted... it was the first "severe" and unusual manifestation I got that started the endless dermatitis on September. Prior to those red dots I felt EXACTLY what you've just described and I remember I told that to my doctor: I started feeling an itch right under my right armpit and in a specific spot over my hip. it was like there was something there. I remember me checking out the spots looking for an itching ingrown hair or something, but there was nothing! Then about almost 2 days later....bang!

 

 

Yes I do have my procedure on Monday. So scared: I wanna give a name to what I'm experiencing, but on the other side I'm scared for both scenario:

1) No celiac disease. What's it then? I've been to dermatologists, gastroenterologists. What doctor now?!

2) You have it. How can I live without pasta and bread? I live in ITALYYYYYY

[squirmingitch]

You live in ITALY!!!!!!!!!!!!!!!!!!!!!!!!!!! And that's exactly how you can live WITH celiac disease if that's what you have. I was just thinking earlier about how celiac savvy Italy is. YES! ITALY, the land of all things pasta. I simply can not tell you how many times on this site I have read about celiacs from the US visiting Italy & posting the great experience they had there regarding food. They say all they do is just mention celiac & the waiters/waitresses have it all covered. Of all the countries in the world, Italy is the last place a celiac thinks would be celiac friendly but from what I read, it is the premier hands down. Way better than us slow witted Americans.

There are really super gluten free pastas out there. There are really great gluten free replacement foods for everything, everything! And if you like to cook & bake, there are cookbooks and recipes galore. 

Read on my friend & learn about celiac awareness in your country:

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

So what was that you were saying?

[squirmingitch]

Here's a link for the Italian Celiac Association

Open Original Shared Link

[Chemist89]

Yes, I know. Weird to believe that Italy is really "celiac friendly". 

All restaurants offer a gluten-free menù and the government gives refunds on food (an adult gets something like 150 USD a Month, which isn't that much BUT better than nothing!!!)

btw, I will see tomorrow. I don't really feel like I will be positive and usually I'm not wrong. 

[squirmingitch]

Rarely can the doc actually see the damage on the scope unless one has total villious atrophy. You will have to wait until the biopsies come back to find out. In the US that generally takes about 2 weeks but the timing in Italy could be different.

[Chemist89]

OMG, that was worse than expected! I still have some sore in my throath and chest!

Squirmingitch, as you said it will take 15 days for the biopsie results, right now the young doctor just said I'm not celiac, indeed in the medical report he wrote "normotrophic duodenal villi", but that's just the macroscopic view. To be honest he even questioned about the prescription (why duodenal biopsies? Tour markers are negative! He even called the gastroenterologist who visited me, who is the chief of gastro btw!)

well, let's wait!