Help with diagnosis

[SJenkins114]

Hi everyone,

I have been checking out the forum after developing a rash about 2.5 months ago. I have learned a lot, but I am trying to figure out what’s wrong with me and I have some questions.

My rash consists mainly of clumps of blisters that I thought were acne at first ... but they itch like hell. I have gotten clumps on my elbows, my hips and thighs, around my elbow area (back of elbows), my hands, wrists and also below my arm pit (about 4 inches below arm pit and backwards from my breasts). Occasionally I get a random stand alone blister. Another weird thing, and so sorry for TMI, is that I got extreme, extreme itching in my public area but no rash. 

My doctor originally said it was contact dermatitis and gave me hydrocortisone (did not work), triamicinolone (did not work) and then prednisone orally. That worked but I just took my last dose. I switched PCPs in the middle of this and the new doc said if it comes back, I can come in for a skin biopsy. My question is, how long do I have to be off all of these steroids to get an accurate biopsy? I got a little pushy and asked for a celiac blood panel, which she did, but the results have not come back in and it has been 4 weeks on Tuesday. 

With having just taken the last dose of prednisone, I am starting to panic a bit. I have had some itchy spots through  out the prednisone but it is manageable but emotionally I am at my wits end and I’m literally scared of this rash.

If I need to eliminate gluten, that’s what I will do but this is going to be a long challenge for me. My diet is pretty horrible and I do recognize that. When I started seeing my nutritionist, I was living off of frozen pizza and now I eat that maybe twice a week. But making that change took me about 8 months. 

I guess I am just overwhelmed right now and just hoping I can get some extra information. 

Thanks for listening and thanks for your help! 

[kareng]

You might want to find a new doctor.  Celiac blood tests take a week at most.  But taking steroids could mess up the blood work.

[SJenkins114]

Ya haha that’s what I thought too. Does anyone know if using triamacinolone topically would mess up the blood results? I hadn’t started the prednisone orally when I had the blood work done.

This mess with the blood work is what made me find a new PCP. She was going to try to track down the results and said she could do a skin biopsy if the rash returned. So I am just wondering how long I need to be off the prednisone before doing a skin biopsy? 

Here are some other things I thought of: 

I just wanted to add some additional info in case someone has ideas...

 

Some of the things I’ve tried for the rash are tea tree oil in a coconut oil base (worked about as well as the triamacinalone .. so not well), rhus tox (despite my current horrible diet and lifestyle I have some knowledge about natural remedies - but I think this made it worse) and a calendula/st johns wart/poplar bud sauve that I’ve seen cure some really strange skin stuff but it didn’t work for me I have read that it’s best to stay away from these types of homeopathic remedies but I was so desperate.

 

When my doctor told me it was contact dermatitis, I switched Meyers soap for laundry and a vegetable oil soap for showering. I got latex free gloves for when I clean at home. This didn’t help anything. 

 

I thought it was possible that it was scabies, as I work in a group home and some other coworkers have gotten rashes but the one person who had a similar rash to mine concluded it was an allergy to a biotin supplement she was taking. Hers is getting better after stopping the supplement.

 

Another thing that happened was I discovered that I lost a patch of hair on the back of my head. It’s about the size of a silver dollar and it never itched. It just fell out. This happened to me once before, but my dad had just passed away unexpectedly and I was very stressed. I’ve been kind of stressed this year with working full time and going to school and all of this occurred shortly after I wrapped up my classes in February. 

 

Currently, I only have a few blisters after taking prednisone and I am moisturizing with coconut oil only, twice a day because my skin got very dry after the steroids and tea tree oil. 

 

One thing I noticed this year was I got dry skin for the first time (before the rash started). I wasn’t as on top of it as I should be because my skin has really never done anything strange. I don’t know if the dry skin triggered something in my skin?

 

[squirmingitch]

You want to be off oral steroids 2 months before getting a blood test, dh biopsy or endoscopic biopsy. Off topical steroids about 2 weeks before getting dh biopsy. 60% of those with dh test negative on the celiac serum panel b/c the antibodies are concentrated mostly under our skin although we do experience the villi damage like other celiacs. A dx of dh IS a dx of celiac & no further testing is needed. We do tend to have patchier villi damage though & often experience fewer, milder GI symptoms than celiacs who do not have dh. See:

Open Original Shared Link

Here's how a dh biopsy is properly done. If they take it ON a lesion then you're screwed b/c that is NOT how it's done.

Open Original Shared Link

Just like for the celiac blood panel, you must be eating gluten every single day for the previous 12 weeks for the dh biopsy.

It surely sounds like you have dh & you really should get a dh biopsy but you can't right now b/c you took all those steroids. Oh & btw, you don't even know how much I hate to tell you this but almost all of us get a rash backlash from hell when the steroids wear off. NSAID's tend to make the rash flare. High iodine intake is like throwing gas on a fire as far as the rash is concerned so you might want to go low iodine for 2 weeks or so & watch it thereafter when you eat large quantities of high iodine foods. See thyca.org for a low iodine diet (minus the gluten parts).

 

 

[SJenkins114]

Thank you so much for the info!! I figured that I was going to run into problems taking the steroids but with my original PCP, she was referring me to a dermatologist but I couldn’t get an appointment until 8/1. So she gave me steroids. Then I found a new PCP who said she could do the biospy herself, but I had started the steroids  

Does anyone have any advice for surviving the rash without steroids, while waiting for the steroids to clear? I will watch the iodine foods. Ugh what a mess! 

Also, I uploaded some picture a of my rash. Some are pre-prednisone and some are post-prednisone. Sort of awkward to have someone else look at but this is kind of the worst. Does it look like DH? I know DH can look like a lot of things but I’d be interested in others opinions.

Open Original Shared Link

also let me know if you can’t see the pictures. They are supposed to be public.

[squirmingitch]

OOPS! That should have said thyca.org for low iodine diet. Darn spell check changed it on me!!!! Grrrrrrrrrrr

Back after I read your post.

[squirmingitch]

Oh you're welcome!

The pictures aren't really that helpful except the elbow ones. The others I think are taken too close? I can't make much out of them. But the thing is, there are lots of skin conditions that can look like that. What matters more is the way it presents, the way it acts. I always put more weight in what people describe about the rash as opposed to the photos of it. Also when they describe what treatments have been tried for it. 

I was not on prednisone. I was put on Dexamethasone (I call it dex). This was prior to knowing this was dh. I hated that stuff!!! Made me bounce off the walls but it surely did take care of the rash --- rash was GONE. But the minute I stopped, the rash came back & a day or two later & it was worse than before I took the dex. What I finally had to do was taper, taper, taper, taper, very slowly off of it. Then you 're going to have the rash but it will be the "normal" (boy! that's a joke!) rash. 

Something else I want to mention about the biopsy. The patterning the pathology will be looking for is very easily destroyed. This is why the biopsy has to be taken from clear skin adjacent to an active lesion -- because the lesion itself destroys the patterning pathology is looking for. Scratching will do the same thing - destroy that pattern. SO when the time comes, & you're ready to get your biopsy, DON'T scratch!!!! I know, I know, but you have to control yourself. I tell people, put a band aid over it & then top that off with several layers of gauze padding. At least the you go to scratch, you encounter the padding & you catch yourself.

 

[SJenkins114]

Wow! I’m so glad I decided to post about this. I will definitely be putting gauze and bandaids on lesions so I don’t scratch them when it is biopsy time. Thank you for the tip! 

Thank you for looking st the pictures! It’s tough to photograph lol. If it reappears, I will try to get better pictures but I definitely get what you’re saying about how the rash acts being more important. The one thing that stood out to me was when the itching started, all of my patches would itch, all at once. Then I would scratch them all and it would stop for a few hours. And then they would all itch again, at the same time. 

I also forgot to mention. My new PCP prescribed 40 mg of Pepcid once daily and PRN of vistaril. She said that Pepcid can help moderate a histamine reaction. I’ve been taking the Pepcid daily and vistaril at night. I’m not sure it is making any difference. I could take the vistaril up to 4 times a day but antihistamines make me tired and a bit depressed, which I definitely don’t need right now.

I will post again soon ... as I come off the prednisone I’m sure I’ll have more to say about this. Hopefully someone in the future can read this and get pushy about a biopsy before taking a steroid

[squirmingitch]

Ask anything anytime hon. That's what we're here for. That's what people on this site did for me when I found it & came on asking 1,001 questions. 

Unfortunately, by the time most people figure out they might have dh, they have taken the steroids prescribed by the doc or dermatologist. Sigh. Hey, I did. I didn't know. 

Yeh, some people find a little relief from antihistamines. I never could decide if I truly was getting any relief or if it was just ramping down naturally. Let me put it this way.....it wasn't enough to allow me to make a concrete statement.

The rash will wax & wane & the rash can come or go frankly whenever it freaking decides it wants to. It will drive you completely batty! Just forget trying to predict it --- that way lies madness. It can & does present whether you're eating gluten free or not UNTIL all the antibodies are out from under your skin. Just so you know. Some people get relief in weeks, some it takes years & years. The rash is sensitive to the tiniest amount of gluten & I mean the tiniest! You have to be rabid about not getting cross contaminated.

[Wheatwacked]

Since the prednisone works, and the Pepcid doesn't make a difference, stick with the prednisone and start GFD. One side effect of prednisone is an "unrealistic sense of well-being".(???) Pepcid has been implicated in kidney failure. I was on a course of 60 mg APO Prednisone (not prednisolone) for 10 days to treat gout. At the end of the treatment I was surprised to realize that during that time I was getting out of bed and actually functioning and was back in bed when I stopped taking it and was switched back to Advil for fibromyalgia. So in 2011 I was switched from 800 mg three times a day Ibuprophen (Advil) to 30 mg a day oral prednisone. Best thing ever. When I started Gluten free diet in 2014 I was able to reduce that to 15 mg/day. I can reduce it to zero for about a week but I feel increasingly crappier until I go back on the prednisone. 15 mg a day is my optimum. Apparently my adrenal gland can't make enough of the right stuff by itself. So be it. The prednisone is converted to the active prednisolone in the liver as needed. I had three dogs who lived to age 13 who were on prednisone for the last 5 years of their lives for arthritis. My fourth dog a black lab had congenital hip dysplasia and he was on 5 or 10 mg a day from age 9 months until his death at 9 1/2 from Degenerative Myelitis. His hip x-ray at 9 years old showed no arthritis. All of them ate Lamb with Rice for most of their lives. The only test that really matters is if your quality of live improves with a gluten free diet. There is no cure, only abstention.  Then you can find what else ails you. If you respond to GFD then you can go back to your GP and get evaluated for vitamin and mineral deficiencies, because a side effect of Celiac is nutritional deficiencies Malabsorption syndrome runs hand in hand with Celiac. To date I was deficient in D3, iodine, B5, Lutein, iron, magnesium. I go for 50% of the RDA upper limit or more and within two weeks I either have no change, indicating not lacking; or a noticeable improvement. I added them one at a time so I know what causes the change.

Here is what I take on a daily basis and how it helps me:

D3: 10,000 iu gelcap. Mood and depression. There's a reason it is the sunshine vitamin. 

Iodine: healing, essential to apoptosis and wound healing and testosterone and energy. one sheet of sushi seaweed (Nori) is 400 umg. 400% RDA minimum. I recently increased it to two a day which is still only 80% the RDA upper limit. Less than 100umg and you are looking at thyroid issues. Most doctors will want to prescribe Thyroxine.

Magnesium: seems to improve blood flow to the extremities. My cold numb feet are less cold. 500 mg capsule of magnesium oxide is only 50% bioavailable. 250 mg is less than the RDA upper limit for supplement (350mg) and is easy to take. There is no upper limit for magnesium in the food we eat. The dose for constipation is a supplement like magnesium citrate starting at 800 mg (8 ounces).

B5 also referred to as Pantothenic acid. Cold numb feet seem less numb. 1000 mg sustained release capsule. I wonder now if this would have helped Riley's degenerative myelitis because it is said also to support the myelin sheath. There is no RDA upper limit.

Iron: one Geritol with vitamins capsule. One day I woke from a dream with the old Geritol commercial screaming in my head (no energy? iron poor blood? take Geritol!) So I tried it and was amazed.

Lutein: after two years of Can-See eyedrops my optometrist says the cataract in my left eye is clear but the right is worse. I had this windshield wiper effect in the right eye that she could see. I started taking 40 mg a day and after only two weeks it appears to be gone and my vision is perceptibly clearer. By the way once I started GFD my night vision improved and I no longer get protein buildup on my bifocal contacts.

Everyone's response obviously will vary, but rest assured you will have deficiencies and it is worth investigating. Prednesone is the least of your worries.

 

 

[Wheatwacked]

Sorry, one final comment on Prednisone. In the early '70s my mom's best friend was diagnosed with liver cancer and was given 6 months to live. She was treated with prednisone, I don't know the dose or form, and died seven years later.

[Posterboy]

On 5/19/2018 at 9:17 PM, SJenkins114 said:

My new PCP prescribed 40 mg of Pepcid once daily and PRN of vistaril. She said that Pepcid can help moderate a histamine reaction.

SJenkins,

Try the generic of Tagamet .. .. Cimetidine instead.

See this article by Yvonne Mostat the Confessions of a Celiac Nerd.

quoting Vonnie

"What??!! Dapsone was my life-line; I could never live without Dapsone! Three days without that "stuff" and the dreaded spots were back. I was referred again to a dermatologist, now fifteen years after my diagnosis, and he prescribed Cimetidine, a medication used for stomach disorders. Who would have known? But it works - three times a day that is. Another dratted pill!"

Maybe you are not taking the Pepcid often enough?

She took Cimeditine (generic Tagamet) another H2 antagonist 3/day.

I also recommend this thread on DH if you have sometime (it is kind of long) started by squirmingitch but it is exhaustive.

***this is not medical advice but it always good to learn from other (Celiac) NERDS (Yvonne) that is that has battled in the trenches with the same problems you have had your self.

I hope this is helpful.

2 Timothy 2: 7  “Consider what I say; and the Lord give thee understanding in all things”

Posterboy by the grace of God,

 

 

[Posterboy]

On 5/19/2018 at 11:58 PM, Wheatwacked said:

Pepcid has been implicated in kidney failure.

Wheatwhacked,

While I am not fan of acid blockers.  H2 Antagonists like Pepcid have not yet been indicated in Kidney disease.  It is the more popular PPIs acid reducers that are the problem for kidneys as I understand it.  PPIs actually replaced H2 antagnoist (in the market) because they have higher ( and longer) acid blocking abilities and thus are harder to get off of with their attachment rate of PPI's  (acid rebound) when stopping make them a very popular drug for the drug companies.

Chris Kresser has a great overview on why people take acid reducers and their unintended consequences.  He says it well  . .. "a symptom is  not a cause".

Open Original Shared Link

Thought they do have similar sounding names.

Nexium, Prilosec and Prevacid  are PPIs.

quoting

"The link to kidney disease did not appear when the researchers looked at medications such as Zantac and Pepcid, which combat heartburn in a different way, by blocking histamine production in the cells that line the stomach."

See this Washingtonpost article on the topic.

Open Original Shared Link

****this is not medical advice but I hope it is is helpful.

2 Timothy 2: 7  “Consider what I say; and the Lord give thee understanding in all things” this included

Posterboy by the grace of God,

[Posterboy]

Wheatwacked,

Try taking some Magnesium Malate or Malic Acid for your Fibrobyalgia.

Source Naturals has nice supplement with Magnesium Malate and Malic Acid.

Nature's life has a supplement with just Malic acid in it.

You are already taken Vitamin D that been shown effective in alleviating some of the effect of Fibro.

Here is the Livestrong article on Magnesium Malate, Malic Acid and Firbromyalgia link.

Open Original Shared Link

You might also try taking some BetaineHCL of 3 or 4 capsules with your meal and 2 glasses of water to help activate the powdered stomach acid you have just taken.  If it is low taking powdered stomach acid will probably help improve your digestion/nutrient absorption.

It (strong stomach acid) can help you absorb minerals like the Iron and Magnesium you are taking.  When it (Stomach Acid) is too low we become low in our Minerals mainly but also our B-Vitamins and fat soluble Vitamins because a strong stomach acid helps us dissolve them so we can the absorb them in the Small Intestine.

Here is the link on "Role of gastric acid in food iron absorption" so you can read it for yourself.

Open Original Shared Link

I found treating my low stomach acid help my digestive issues.

Here is my experience with low stomach acid being misdiagnosed. Yours might be similar.

Yours might not bee.  I don't know but it is worth researching more.

****this is not medical advice just my own research and experience with low stomach acid and I find many others have the same problems that are often today being misdiagnosed today. . .because stomach acid is not being tested!

I Hope this is helpful.

2 Timothy 2: 7  “Consider what I say; and the Lord give thee understanding in all things” this included

Posterboy by the Grace of God,

[SJenkins114]

I’m baaaack. Lol.

So I have another rash question? Has anyone seen their rash IMPROVE with scratching?

I have gotten in the habit of scratching all of my itchy spots twice a day with a hair brush (the hairbrush is like one that you’d use to brush a horse haha) and then putting coconut oil on it and I dare say it is helping. It’s drying out and looking better and it also hasn’t hopped to new places on my body. Anyone experience this?

I am 9 days off prednisone. I wouldn’t say I got a rebound rash but the prednisone did not completely clear the rash so the spots I still had at the end of prednisone have gotten larger since I have been off.

I also did try the Tagamet 3x a day for a week but it didn’t work very well for me so I switched back to Pepcid. I don’t know if that doesn’t anything or not lol. 

I was just wondering if anyone’s rash got better with scratching?

I still plan to do a skin biopsy in a few months once the steroids are out of my body and I’ll stop scratching and start putting bandages on the bumps once I get closer to that. 

Thanks guys!

[squirmingitch]

NO, scratching did not improve my rash.