Testing Questions

[kitkat13]

Hello folks!

 

I have been reading various topics and so many of you are a wealth of knowledge!

 

I am a 33 year old female. I have been experiencing symptoms of celiac disease for most of my life. I had some testing done as a child, but they couldn't find a reaon for my GI issues. Since then, I contributed my issues to a vegan diet (big D up to 6 times a day) or sugar (joint pain, headaches, fatigue). Over the last year I have been eating gluten free with resolution of all symptoms unless I accidentally ingest gluten.

 

About 2 months ago, I was served regular pasta by a resturant. My body freaked out and I experienced joint pain, loss of coordination, and GI symptoms. Additionally, I broke out in an insanely itch rash just below my knees and on the tops of my feet. Benadryl nor cortisone cream would relave the itching. After 3 weeks I broke and took a dose of Prednisone (I know now from reading, that was a mistake). It helped with the itching and the lesions started to heal. A week later they were back. Just a couple of days ago I broke out all over my chest, shoulders, lower back, neck, arms, and even a little on my groin. All I do is itch! My PCP prescribed me HydrOXYzine - to help with the itching until I can get in with a dermatologist. It does little for the itching, but it does knock me out at night so I can sleep - I cannot take it during the day because of this.

 

Even though I haven't been eating gluten for the past year (sans the small amounts by cross contamination) I requested that my PCP do the bloodwork. My vitamin D is currently 15! So she sarted me on a high dose supplement for the next 12 weeks and we will retest.

On the celiac side: My IgA was 160 and my TT IgA antibody only 3 units. The rest of the results are not back yet.

 

My dermatologist appointment is on Oct. 2nd. It seems I need to take in small amounts of gluten until then? I really hate to do that because some of the symptoms interfere with my job and school. But I need something. I am so itchy. It is interfering with my life on many levels! Also, how do you prevent the bliters from breaking? It seems impossible with how itchy I am.

 

Any additional information is appreciated.

Wendi

[cyclinglady]

Welcome!

 

It does seem that you are between a rock and a hard place!  Why the need for a diagnosis now?  You have been gluten free for a year.  Can you continue to be gluten free?  It sounds like you have celiac disease.  Your doctor should not have tested you for celiac antibodies when you just had one accidental glutening and possible cross contamination. It was a long shot but it did not pan out!  

 

I do not personally have DH, but I would advise you to read the DH section of our forum.  There is a very special way of having a biopsy taken for DH.  If your dermatologist is not celiac savvy, you most likely will get a negative result!  You have to be eating gluten if you want to get that skin biopsy!  

 

I am official diagnosed but my hubby is not.  He went gluten-free per the poor advice of his GP and my allergist.  His symptoms resolved, but he'll never really know if he has celiac disease.  He knows (and we all know) when he gets glutened!  He's the first to say that I have had it easier from family, friends and medical support because I have a diagnosis.  

 

You know what is best for you and your situation.  I wish you well!  

[squirmingitch]

Oh boy. {{{{Wendi}}}}}

Kudos for doing reading & research. it will make things much easier for me to explain since I won't have to start from zero.

First of all, your blood test was not a complete celiac panel AND if you were gluten free for a year then you would or should test negative. IF you have dh then 60% of us test negative on the celiac blood panel anyway. Second, when you listed the results of the 2 tests it means nothing without the ranges as every lab is different & has different ranges.

Yes, you will have to do what's called a gluten challenge.

Open Original Shared Link

 

UNLESS you get yourself to a knowledgeable derm RIGHT AWAY and get a dh biopsy done. Read on this dh section to see how the biopsy is done. It's NEXT to an active lesion NOT ON one. Further, most derms will say it isn't dh & they will say it's scabies, or eczema or psoriasis or poison ivy or bed bugs or......

 

With dh there is nothing that stops the insane itching. Well, there is a drug called Dapsone but I urge you to do diligent research before you consider taking that stuff. You will need to be monitored closely while on it.

 

If you have dh you will have to make no mistakes in the gluten-free diet because the rash is sensitive to the tiniest amount of gluten. Each time you get glutened, you will be putting antibodies under your skin that may make themselves known into the future. 

 

If you wait until the Oct. 2nd appt. with the derm then you will have to have been actively eating gluten until the appointment.

 

There is no way to keep the blisters from breaking. Either you scratch until they break OR they will fill with fluid until they break on their own but break they are destined to do. The blisters do not "go down" & melt away -- they are going to burst.

[kitkat13]

They you both for the replys!

 

As for why I'm seeking diagnosis:

 

1. To be able to obtain a prescription for Dapsone.

2. In the future should there be medical advances that I can only access with a diagnois.

 

While I have been gluten free the past year, I have experieced A LOT of cross contamination. Unless I eat in a dedicated gluten-free resturant or one that has a dedicated part of the kitchen I seem to develop symptoms.

 

I do appologized, I should have known to post the normal ranges - as they very from lab to lab

IgA = 160 for my result within the normal range of 68-378 mg/dL

TT IgA= 3 units for my result, negative. Normal range being 0 - 19 units

 

The full panel was ordered, but I just had blood drawn on Thursday, so the remaining tests have yet to come back.

 

I have no idea if my dermatologist knows anything about DH or celiac disease. I live in WV, so we are kind of behind the time.

I plan to take him lots of info. He is the best in our area.

 

I only ask about the blisters because I was told in another forum that they need to be intact! I was like, how the heck am I supposed to do that!?

 

I have been taking pictures of my current rash a it progresses to show the dermatologist.

 

By the time I see him, it will be close to 2 months since I took that does of Prednisone. I hope it will not affect the outcome.

I bought a box of crackers to start a "gluten challenge" of sorts until I see him. I'm pretty nervous as I am starting a new job and school is kicking into high gear.

 

Thank you so much for replying and sharing your information.

[squirmingitch]

Okay, so what you read on the other forum about the blisters needing to be intact is not correct. BUT the pattern the lab will be looking for is easily destroyed by scratching and the lesion must be active, not an old one. Here's what I suggest people do ~~~ pick a few lesions on fatty skin, meaning someplace the derm is likely to take a biopsy from rather than the skin of the forehead or your ear & so forth. These would obviously be "new lesions" within the last few days before the appointment. Put a thick pad of gauze over those places so when you reach to scratch you will encounter that thick gauze pad & it will remind you not to scratch there. At night, put gloves or socks on your hands to further ensure you don't damage the patterning. The other thing that will make the patterning difficult to see in the lab is if you've had repeated bouts of rash in that spot --- in other words, the rash itself can over time destroy the patterning by occurring over & over & over in the same spot.

 

Good luck! Please let us know how things turn out.

[kitkat13]

Thank you!

Those tips are incredibly helpful.

[squirmingitch]

You're most welcome!

Here's a link for things that may help you deal with the rash in the meantime:

https://www.celiac.com/forums/topic/96552-help-for-the-itching-stinging-burning-pain-of-dh/

[ravenwoodglass]

Being strictly gluten free will take care of the rash although it will take some time to heal and for the antibodies to leave the skin. Even the tiniest amount of CC will reactivate the rash.

If you do choose to use Dapsone please make sure your doctor runs a liver panel first and that the panel is rerun frequently while you are on it as that med is quite toxic. People with celiac can have liver impact from the disease so it is vital that you make sure your liver hasn't already been impacted.

[kitkat13]

Thank you for the additional info. This all started with accidental ingestion.

She ran a complete metabolic panel on me with this round of testing. Liver enzymes are fine. Only abnormality was extremely low vitamin D (she currently has me on 50,000 UD per week for 12 weeks).

I am eating 4 saltines a day and being less careful about cross contamination until my appointment on Oct. 2nd. The rash is getting worse. The itching is so intense.

I did make the mistake of forum cruising and seeing pics of a rash that looks similar to mine - with someone suggesting scabies. I'm horrified, so much to the point that I did my own skin scraping (I have a background in micro and parasitology) to check. I feel based on some of my PCP's comments, she thinks that is what I have - she kept mentioning having the dermatologist do a skin scraping and I couldn't figure out why. So how do I approach this with the dermatologist? Do let him scrape and demand an additional biopsy to check for DH? Wouldn't they see the mite upon examination of the biopsy if they are in the skin? The pictures just make my skin crawl. I'm scared to be intimate with my husband. He has no rash, and he is the only person I have skin to skin contact with.

 

 

[squirmingitch]

Let him do a skin scraping. He should be able to look at it right then & there & you tell him to do it while you sit there in the exam room. Then when he comes back & says it is NOT scabies you tell him he IS now going to do a dh biopsy!!!! He works for you! Don't leave his office until you get what you want. Stand firm. Tell him you let him do the scraping to settle his mind now he needs to do the dh biopsy to settle your mind.

Now calm down & think logically for a moment. Have you ever heard of eating saltines making scabies go crazy?????? 

How many times have people with dh been told it's scabies? I can't count. And it's ridiculous because all the derm needs to do is the scraping right then & there but they don't -- they just say it's scabies. Absurd!!!! If they want to say it's scabies then they have to PROVE it's scabies.

[squirmingitch]

Let him do a skin scraping. He should be able to look at it right then & there & you tell him to do it while you sit there in the exam room. Then when he comes back & says it is NOT scabies you tell him he IS now going to do a dh biopsy!!!! He works for you! Don't leave his office until you get what you want. Stand firm. Tell him you let him do the scraping to settle his mind now he needs to do the dh biopsy to settle your mind.

Now calm down & think logically for a moment. Have you ever heard of eating saltines making scabies go crazy?????? 

How many times have people with dh been told it's scabies? I can't count. And it's ridiculous because all the derm needs to do is the scraping right then & there but they don't -- they just say it's scabies. Absurd!!!! If they want to say it's scabies then they have to PROVE it's scabies.

[kitkat13]

I know! I just freaked out at the suggestion.

I didn't see anything on the scraping I did except for skin - but my microscope is not the best.

Thank you for calming my mind. I will be firm with my doctor.

[squirmingitch]

Remember, the biopsy is taken NEXT to a lesion NOT on one.

[kitkat13]

Update!

So everything was good and then I mistakenly bought and consumed "gluten reduced" beer. (Why does that even exist?)

Anyway, I woke up Memorial Day with some red, itchy patches on my chest and the fold of my left elbow - which in a few hours turned into patches of fluid filled bumps. I was able to get a hold of my derm on Tuesday and explained that it was super important that I get in for a biopsy. I was able to get in yesterday (Thursday). I explained what happened, plus the last time this happened and how nothing OTC or prescribed helped with the itching. I even said to the nurse that the biopsy needed to be done next to the lesion and not on it. I'm not a dummy, I work in the medical field too. But I'm pretty sure she thought I was a self diagnosing nut job. Anyway, Doc comes in mumbles so crap and says "well two weeks is too long, we can't do a biopsy." I was like "What? No! This happened on Monday." So he agrees to do the biopsy. He picks a spot on my neck where there are many lesions. He uses a scalpel not a punch. Sure enough when I get home and remove the bandage he sampled from the center of one of the lesions! SMH! I do live in the armpit of America so I should have known. It was nice for him to admit that it definitely looked like DH, but looks like I will end up with a false negative.

I did find out that Pittsburgh has a Gastrointestinal Dermatology Clinic that specialized in DH. I am going to call them Monday and see if I can get another biopsy. The rash has now extended to my upper and lower arms.

[squirmingitch]

Sigh. I'm sorry you went through a false biopsy. Doesn't it just kill you?!

Here's hoping for Pittsburgh!

Please let us know what happens.

[kitkat13]

YES!

I really did have high hopes. He knew what he was talking about so I hoped he knew how to do the biopsy correctly. He is the best dermatologist in the Ohio Valley. Maybe by some crazy chance it won't be negative, but with how much I was scratching, I doubt it. I am stoked that UPMC saw the need to create a clinic for these types of hard to pin down skin conditions. Just wish I would have found it sooner!

At  least they didn't think I had Scabies!

[squirmingitch]

I can't believe he used a scalpel for what should be a punch biopsy EVEN if it's done in the wrong place!

[kitkat13]

*sigh*

I called the clinic today and got bad news. The doc that opened it passed away and it no longer exists. UPMC had other derms with Celiac and DH experience but they don't take my insurance. I suggested self pay but they said it would be incredibly expensive.

I'm going to try WVU tomorrow.

Does anyone know of an experienced derm in OH, WV, or western PA?

[squirmingitch]

Try searching in the Doctors section:

https://www.celiac.com/forums/forum/6-celiac-disease-doctors/