When is DH not DH? When it's seborrheic keratosis

[weebl]

So I've had about 2 weeks over Christmas and New Years to wrap my head around what I learned at the doctor's office after my biopsy results came back.

Before I get to that, I am happily 3 weeks gluten free again after my gluten challenge. The changes I noticed within days of completely eliminating gluten. Intense itching diminishing, bowel movements returning to normal, bloating disappearing, general feeling of malaise/fatigue and clouded thinking gone, and later on, the reduction of areas covered by lesions.

Yet no test can confirm DF/Celiac disease.

The results of the biopsy came back negative for DH, but indicated it was instead seborrheic keratosis (SK). Ummm, okay. This certainly threw me and my doctor for a curve. I was prepared to hear it was DH. I was even prepared for hearing it showed nothing. But not anything other than those two possibilities.

Can it be, though? A form of SK many people would be familiar with is cradle cap on babies. Apparently, I have a form of it, which appears to be triggered by gluten, or at the very least ingesting wheat.

So what does that mean? Apparently, less severe than having DH/Celiac, and that I would be considered to have NCGS. Apparently also less understood, at least when linked to gluten, than DH. I guess for insurance purposes, this is a plus, as I can answer no to having Celiac disease.

Am I alone here in ending up here? A rash that from physical appearance, and reaction to the absence or presence of gluten behaves like DH, but the tests show no markers for it, and instead show it to be something else.

I left the doctor's office very confused. He and I agreed, it was very clear gluten was having a negative impact on me, and that I should have a gluten free diet.

I have also been referred to a dermatologist, yet another one I haven't seen before. Hoping I can get some answers as to what this is, and how to treat it, other than gluten elimination. I suppose a possibility exists we had a biopsy site with no TTG present, but I have already decided that I am done with gluten challenges. If it is undiagnosed/misdiagnosed DH, then so be it, I am already doing what I need to treat it.

[weebl]

I actually found another page describing SK today, and it is described as generally not itchy, and does not go away on its own. Both those descriptions do not match my supposed SK, not to mention they barely resemble any pictures of SK online, but look exactly like many instances of DH.

Sigh.

[Posterboy]

weebl,

You can search for celiac.com and see what other threads say about this topic.

A very good thread about DH is this thread.

https://www.celiac.com/forums/topic/115445-relief-and-it-isnt-dapsone/

I also developed Pellagra (undiganosed) as part of my Celiac diagnosis.

You can search for the posterboy on celiac.com and read my posts or read this webmd article to see if it helps  your SK.

I googled your SK and found this link that says it (Niacinamide) might help other seborrheic skin disorders.  Pellagra has a skin element as part of it's presentation.

https://www.webmd.com/vitamins/ai/ingredientmono-1534/niacinamide

It helps some people.  Both Knitty Kitty and I sware by it (Niacinamide) the nonflushing form of Niacin. I also sware by Magnesium Glycinate but it (Magnesium) doesn't help skin issues that I know of but it will help fatigue and muscle cramps.

I hope it helps but it is not medical advice. 

“Consider what I say; and the Lord give thee understanding in all things” this included.

2 Timothy 2: 7

Posterboy by the Grace of God,

[weebl]

Thanks, Posterboy. 

I really question the accuracy of my diagnosis as it does not at all fit the pattern of SK, but almost to a T fit the pattern of DH. Test says otherwise, though. 

Perhaps I have both and was unfortunate to have had the biopsy done where SK was more dominant. 

I may never know officially, but that won't stop me from doing what makes it better. 

[cyclinglady]

You gave it your best shot.  You know that gluten causes you problems.  My hubby went gluten-free 12 years before my celiac disease diagnosis.  He has never looked back and refuses to do a challenge.  What nut would avoid gluten if there were no benefits?  No more snoring, achy body, fatigue, chronic sinus infections, etc. for him.  Is it necessary to have a diagnosis?  Not for him.  Believe me that first year was rough.  He cheated.  He paid the price.  Now he prefers feeling well.  

If I had DH or any crazy rash that resolved by being gluten free, you bet I would remain gluten free.  Wait.  I do get hives.  My last bout was awful.     Six months of thousands of hives daily is not worth consuming or possibly being exposed to gluten.  Did you know that a back scratcher works well in bed to scratch hives that are on the soles of your feet?  Yikes!  

Food can heal.  I firmly believe that!  

[apprehensiveengineer]

I tried to pursue a formal diagnosis while on a GFD (no chance of me doing a challenge - I would have been so sick that I would have had to drop out of school on the other side of the country from home!). I knew I was still getting CC'd a bit (rash had not gone away completely), so I was hoping that this might be enough to elicit a positive test result.

I had an endoscope/duodenal biopsy done, with negative results (as one might imagine). The dermatologist I saw was convinced that it couldn't be DH because "it didn't look like in the textbook" and "didn't appear exclusively on my elbows and knees." Not sure what textbook(s) she read, but all the ones I've seen seem to indicate that appearance is not uniform between patients, and that the most common sites are the buttocks and back, which is where my rash appears primarily. In medicine, DH is a "rare" disease, so even some specialists don't necessarily know much.

She said it was acne and recommended me to use skin products/routines I was already using (lol). I probably should have been a bit more argumentative about it, but I figured she didn't know enough about the condition to be of much use with diagnosis anyways. I've more or less given up at this point, and will await the day science invents a diagnostic test that is reliable on a GFD.

From what you describe, it seems pretty clear that avoiding gluten makes you better. The million dollar question is whether or not someone in your case (or mine) needs to live their life to the celiac standard (ie. take things very seriously and avoid CC very carefully). Being very strict does have a social and health burden, but if you do actually have celiac being more lenient will harm you (even if you don't have noticeable symptoms). Tough situation to be in.

For me, the answer is easy - if I am not super careful/strict, I am miserably unwell. I describe myself as having celiac/DH, but will explain on a need-to-know basis the more complicated state of my diagnosis (or lack thereof) to healthcare practitioners.

 

 

 

 

 

[Awol cast iron stomach]

1 hour ago, apprehensiveengineer said:

I tried to pursue a formal diagnosis while on a GFD (no chance of me doing a challenge - I would have been so sick that I would have had to drop out of school on the other side of the country from home!). I knew I was still getting CC'd a bit (rash had not gone away completely), so I was hoping that this might be enough to elicit a positive test result.

I had an endoscope/duodenal biopsy done, with negative results (as one might imagine). The dermatologist I saw was convinced that it couldn't be DH because "it didn't look like in the textbook" and "didn't appear exclusively on my elbows and knees." Not sure what textbook(s) she read, but all the ones I've seen seem to indicate that appearance is not uniform between patients, and that the most common sites are the buttocks and back, which is where my rash appears primarily. In medicine, DH is a "rare" disease, so even some specialists don't necessarily know much.

She said it was acne and recommended me to use skin products/routines I was already using (lol). I probably should have been a bit more argumentative about it, but I figured she didn't know enough about the condition to be of much use with diagnosis anyways. I've more or less given up at this point, and will await the day science invents a diagnostic test that is reliable on a GFD.

From what you describe, it seems pretty clear that avoiding gluten makes you better. The million dollar question is whether or not someone in your case (or mine) needs to live their life to the celiac standard (ie. take things very seriously and avoid CC very carefully). Being very strict does have a social and health burden, but if you do actually have celiac being more lenient will harm you (even if you don't have noticeable symptoms). Tough situation to be in.

For me, the answer is easy - if I am not super careful/strict, I am miserably unwell. I describe myself as having celiac/DH, but will explain on a need-to-know basis the more complicated state of my diagnosis (or lack thereof) to healthcare practitioners.

 

I'm with  apprehensive engineer.  I now know I am a DH / celiac. I was unable to finish my gluten challenge as I got only through 6 days. I took 2 years to heal and lost a job. No joke I slept almost 2 years 5 days a week when kids were at school. I got my kids off to school 5 days and slept until 15 minutes before the first came home. I am currently considered NCGS as they ruled out all other past IBS diagnosis etc. As I read on forums i am likely better off as NCGS in records for now with insurance etc.

It is not lacking of trying my symptoms to back to age 5, I always had gi  and skin issues. My early 20's my go issues did not make sense and many Dr's got so frustrated. At that time I moved to more alternative practioners to manage.

My skin on I have had everything hives, keratosis pilaras, eczema , contact dermatitis, shingles, we don't know what that is!!, Puppps all diagnosed visually. My children are considered eczema and eczema/keratosis pilarius too. Ironically their skin clears up on our new gluten-free household diet very well. As for now when I get cc which is rare I either have Puppps again ( hmm not likely as I am not pregnant) or DH. Hmm again either I have DH or all you have misdiagnosed Puppps . I think more likely AWOL has DH that has been misdiagnosed.? My cousin is a good standard celiac, but her diagnosis was long and complex.

I get DH on elbows, chest, buttocks, abs, ankles etc. Deep flushing and bumps on my face. And keratosis like rash on upper arms. Odd but skinsymptoms have been consistent when cc since I am now strictly a serious no eat outside of home etc celiac. 

So yes some of us are rare unicorns, but still all gets revealed in time.  I often wish it were not 4 decades, but I am learning to accept it as it is.

Good luck?

 

 

 

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[weebl]

Thanks, everyone. I was feeling alone and "abandoned" by the system. I don't think the feeling of being abandoned is gone, but it is somehow comforting to know I'm not alone.

If only my luck at achieving something so rare had only instead expressed itself with me winning the lottery. lol

[apprehensiveengineer]

Yes, that is exactly how it feels. No one wants to deal with patients who have ambiguous/complicated conditions because it is not satisfying and hard to know how to help them.

I don't actually think DH is all that rare - I think it is just not something that is not diagnosed often, which makes it seem rare. Many confirmed celiacs I have heard from (online and irl) have said that they get an itchy rash when glutened. They already have a diagnosis, and know they need to be gluten-free, so little incentive for them to get a biopsy unless they want Dapsone/prescription intervention. Lots of folks like me, who are very sure they have DH, but who can't find a clinician who will take it seriously.

I personally don't use NCGS as I do not feel that this is factually correct description. Non-celiac implies that it there is reasonable proof that I do not have celiac disease. The only way to do this for someone already on a GFD would be to do a genetic screening, and find that the person does not have any of the genes associated with celiac. This is not the case for me.

I also worry that because there isn't much evidence to suggest that NCGS is an immune disorder (if not, CC doesn't matter) or even related to gluten (maybe FODMAPs, fructans, other components of gluten-containing grains), that I may not get treated properly in medical/food situations. Aside from taking my gluten-free requests seriously, there's a lot more follow-up for someone with an autoimmune disease. This is important to me as I have many close relatives with T1D and Hashimoto's, as well as serious consequences (cancer! Parkinson's disease!) from these illnesses.  

[Posterboy]

On 1/6/2019 at 10:41 PM, Awol cast iron stomach said:

My children are considered eczema and eczema/keratosis pilarius too.

Awol Cast Iron Stomach,

This research might help your children. ... your story sounds similar to mine. ...my mom always had GI problems and several of my siblings all  had GI problems from our birth.

I hope it is helpful but it is not medical advice ... I usually try and over explain things but I think the research will be self explanatory enough entitled "Vitamin B levels during pregnancy linked to eczema risk in child"

https://www.sciencedaily.com/releases/2016/09/160923092924.htm

you can always google more about it if it looks like something that might help you.

Posterboy by the Grace of God,

[Awol cast iron stomach]

On ‎1‎/‎8‎/‎2019 at 7:54 PM, Posterboy said:

Awol Cast Iron Stomach,

This research might help your children. ... your story sounds similar to mine. ...my mom always had GI problems and several of my siblings all  had GI problems from our birth.

I hope it is helpful but it is not medical advice ... I usually try and over explain things but I think the research will be self explanatory enough entitled "Vitamin B levels during pregnancy linked to eczema risk in child"

https://www.sciencedaily.com/releases/2016/09/160923092924.htm

you can always google more about it if it looks like something that might help you.

Posterboy by the Grace of God,

Thanks Poster Boy,

Yes, I am sure you are correct. I was misdiagnosed during my pregnancies and many years after. Likely my whole life. (Although I don't want to tell you know upon reflection just how many missed opportunities there were ) Actually that is why 20-25 years ago I moved more toward alternative practitioners to manage what I had before I knew I had it.

I do hope your info helps future mom's on this board and more importantly that those in the medical community may come across your valuable info.

As for a misdiagnosed celiac during that very important time, I am certain despite having vitamins, even prescription strength, they likely were not absorbed well or at all due to the misdiagnosis and no other physicians having that a ha moment! . 

I often try to accept Poster Boy myself, my pregnancies, my labor/delivery, and children health would have been different had anyone properly diagnosed me prior, or during that time.  I do my best to accept my path/journey. It has been a challenge especially during the 32 post my gluten challenge/diagnosis. I try to accept as (you noted about God) that only God knows why my path went this direction. I do hope one day he enlightens me. More importantly I do hope one day to accept and make peace with it. To be honest I think I still have some work to do.

In closing, my kids and I are much better off now as avoiding gluten (entirely gluten-free house) allows us to not only absorb our vitamins including B's, but our skin is dramatically improved. 

Thanks for the details as I know likely this post will help many in the years to come, so they do not experience unnecessarily what myself, my children, your mom, your siblings, and yourself endured due to the lack of knowledge back during that crucial time.

 

 

 

[Posterboy]

Awol Cast Iron Stomach,

On 1/29/2019 at 7:36 PM, Awol cast iron stomach said:

I moved more toward alternative practitioners to manage what I had before I knew I had it

 

On 1/29/2019 at 7:36 PM, Awol cast iron stomach said:

I am certain despite having vitamins, even prescription strength,

 

On 1/29/2019 at 7:36 PM, Awol cast iron stomach said:

allows us to not only absorb our vitamins including B's

That is what is hard to explain about B-Vitamins . ... it is frequency over amount.

see this study on B-Vitamins and depression entitled "Understanding nutrition, depression and mental illnesses"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2738337/

I will quote from the relative section (but read it all when/if you get a chance). This is from their discussion on B-complexs

quoting

Nutrition and depression are intricately and undeniably linked, as suggested by the mounting evidence by researchers in neuropsychiatry. According to a study reported in Neuropsychobiology,[42] supplementation of nine vitamins, 10 times in excess of normal recommended dietary allowance (RDA) for 1 year improved mood in both men and women. The interesting part was that these changes in mood after a year occurred even though the blood status of nine vitamins reached a plateau after 3 months. This mood improvement was particularly associated with improved vitamin B2 and B6 status. In women, baseline vitamin B1 status was linked with poor mood and an improvement in the same after 3 months was associated with improved mood.

taking B-Vitamins less than 3 months (despite high amounts) will still not cause your serum levels to plateau . ..thus leading to improved health conditions.

Like this study I took many of my B-Vitamins for a "cycle of time" 2/day or with each meal (as it was easier  to remember) I no longer take B-Vitamins because  I have reset my "stress clock" my words . .because B-Vitamins helps us manage stress in the body.

I must stop for now . . .this post is getting too long for now.

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

As always, "Consider what I say; and the Lord give thee understanding in all things."

2 Timothy 2:7

Posterboy by the Grace of God,