Keep Getting more bumps 2 weeks after getting glutened

[ktyler44]

How long do the bumps keep breaking out after getting glutened? Getting the rash is a new development for me. 

[Bree J]

I'm not sure, but I have been getting bumps lately too! I think it might just be the heat not letting my skin "cool down" from that initial irritation? But maybe not. 

[squirmingitch]

No one knows. It's an individual thing. Remember, with dh, the antibodies have deposited themselves underneath the skin. Until they are all out & gone, then one can have an outbreak.

[ktyler44]

Thank you. I just came from the dermatologist. This whole DH thing is all new to me. I've had little bumps break out on occasion that I didn't associate with celiac, but I've never had a breakout like this before. I don't have insurance and can't afford the biopsy until I get some, but he said it definitely looked like DH to him. UGH!

[squirmingitch]

Refresh my memory please. Do you have a dx of celiac disease? Are you presently eating gluten free? I ask b/c if you have a dx of celiac disease then you don't need an additional dx of dh. Also, a dh biopsy is likely to turn up negative if you are eating gluten free. The same gluten challenge rules apply to getting a dh biopsy as apply to getting the celiac blood panel & that is 12 weeks of eating gluten each day. I know, I know, it doesn't make sense that the antibodies are under your skin wrecking havoc yet the biopsy will test negative if you aren't eating gluten but that's the way it is.

[ktyler44]

I had no idea you had to be on gluten that long for a dh test.  I figured if you were breaking out they could test.  The doctor knows I've been eating gluten free, but didn't say anything about having to eat gluten for the biopsy.  I have been "loosely " diagnosed with Celiac by my GP due to multiple symptoms and my gene test, plus the improvement I have experienced eating gluten free. My first doctor didn't test me correctly and didn't even biopsy me for celiac while he was doing my endo even though that's why I asked him to do it. He only checked for h.pylori. I  ended up changing doctors but not before I had gone gluten-free and was feeling so much better.  I was hoping to find out for sure if this rash was dh, which would settle it in my mind.  This dermatologist agreed with my GP, though. 

[squirmingitch]

Yep, it's just like when you get the blood panel. This is why it's so hard to get a dx. If you've been gluten-free, you have to do a challenge & most people aren't up for that. The worst part is that most docs don't know a) you have to be eating a normal gluten diet or b) if you haven't then you have to do a gluten challenge or c) the required length of the challenge.

[ktyler44]

I guess what I still don't get is that I've been eating gluten free for the past almost 3 years,  except for the occasional accidental exposure.  I've never had this type of reaction before.  Actually,  I was thinking about doing the gluten challenge a while back but decided after a couple of days that I  didn't want to risk it. I had eaten plenty of gluten during that time and didn't have much reaction at all.  Now this time I didn't have much at all and am breaking out like crazy.  If there is enough in my body to cause that, why wouldn't there be enough to biopsy one of the spots? How long can the antibodies sit under the surface of the skin before breaking out? Can it accumulate for awhile so that it might have been from a few weeks ago when I started to do the challenge and then this little bit just finally set it off? I know that may be far-fetched but I'm just confused by it.

[squirmingitch]

First you need to understand that when it comes to research & peer reviewed medical studies, dh is like the bastard stepchild of celiac. There haven't been enough studies on classical celiac; when it comes to dh, there have been precious few. We are lacking a ton of hard info. on it. For 7 years, I have been researching dh & I am a research freak. I have never found anything that explains why you can break out with dh, get it correctly biopsied & it comes up negative if you are gluten-free. Yes, the antibodies are there & that's why you break out -- why doesn't it show in a biopsy??? But I can tell you that happens ALL THE TIME. 

I can give you my thoughts & opinion based on my own experiences as well as those of people on this site for those 7 years combined with the scant amount of reliable studies out there. 

First, dh is crazy sensitive to the tiniest amount of gluten. You may have been getting low, low amounts of cc fro a long time but didn't know it b/c you didn't react. Did you know that most of those with dh have much fewer, milder GI symptoms that the classic celiac? Tis true. So I submit you were getting enough gluten cc to trigger the immune response which deposited the antibodies. Then it was just a matter of time. What kicks it off? Many things can, maybe a combo of several. Stress, illness, pregnancy, an accident, or a glutening. We don't know how long the antibodies can sit under the skin. I can tell you it can be years & years. Medical texts say up to 10 years & some say for as long as you live. Were those people being ultra careful not to get cc'd? We don't know b/c these reports are based on doctors observation & treatment of their patients & that of course relies on what the patients related to the doctor about their compliance to the diet. 

Personally, I think it can depend heavily on how long you went undiagnosed -- however many years those antibodies were building up under your skin w/o your knowledge. I know that I had celiac as far back as 8 or 10 years old b/c I figured out that any time I ate anything that had malt in it; I got sick as a dog -- GI kind of reactions. I learned not to eat malted milk balls or Carnation Instant Breakfast Chocolate Malt flavor or Malt-O-Meal crackers among other things. Wheat did not seem to affect me but boy I'll tell you, malt sure as heck did! When I became a teen & experimented with beer -- I wasn't even thinking about beer having barley (malt) in it. Woo boy!!! Was I ever miserable! There were other symptoms of celiac back then but who knew? Now I can piece it all together. So let's say from 10 yrs. old to 55 yrs. old = 45 years. Yes, I had very mild, minor dh for several years off & on before the mother of all out breaks happened. 

13 hours ago, ktyler44 said:

Can it accumulate for awhile so that it might have been from a few weeks ago when I started to do the challenge and then this little bit just finally set it off?

So in answer to this question, yes, it could very well be or it could be that combined with a lot of previous exposures. 

[ktyler44]

Thank you so much for all of that info.  That really helps me even if I don't have all the answers I'd like to have since they don't seem to exist at this point in time.  I, too, am a research freak and have been trying to glean as much knowledge as I can anywhere I  can. 

[squirmingitch]

You're welcome! It's just a piece it all together thing based on reliable studies & our experiences. We all wish we had more & better answers. Instead, we have to muddle through figuring things out as we go & sometimes it's areal b!$@h to figure out. Sometimes you think you must be going crazy. 

[ktyler44]

I do have another question, though.  Is it unusual for it to keep breaking out and spreading over my body? It's on my stomach and breasts, a few new places on my back and buttocks,  one on the back of my neck and one on the back of my scalp.  Now I think it's  starting on my leg.  I already had a couple on my face.  I guess I didn't expect it to spread that much.  

[squirmingitch]

Mine did.

[ktyler44]

Squirmingitch, I noticed you mentioned something about the full blood panel test for celiac on another post.  My son is going to a GI this week to see about getting tested.  Could you post that info here or direct me to where we can find what the full panel consists of, please? Thank you.

[cyclinglady]

TTG IgA

TTG IgG

DGP IgA

DGP IgG 

EMA

Why the complete panel?  Researchers thought the best test a few years ago was the TTG.  Great test, but does not catch all celiacs (like me, others like me, and small children).  Some celiacs are seronegative.  Some might be Immunoglobulin A deficient (IgA).  

Open Original Shared Link

[apprehensiveengineer]

On 8/11/2018 at 10:05 PM, squirmingitch said:

 I know that I had celiac as far back as 8 or 10 years old b/c I figured out that any time I ate anything that had malt in it; I got sick as a dog -- GI kind of reactions. I learned not to eat malted milk balls or Carnation Instant Breakfast Chocolate Malt flavor or Malt-O-Meal crackers among other things. Wheat did not seem to affect me but boy I'll tell you, malt sure as heck did! When I became a teen & experimented with beer -- I wasn't even thinking about beer having barley (malt) in it. Woo boy!!! Was I ever miserable!

That's very interesting. I have personally noticed that I seem to be much more sensitive to barley as well. Beer-related CC is the bane of my existence.

I stopped drinking beer (which I loved!) long before I was gluten-free because I noticed that I would get tremendously ill every time I drank beer, but not other alcoholic beverages. I did sort of notice that I had more problems when I visited (and ate with) my parents, who are highly bread-centric, but this was not as apparent as the beer connection.

I tried to do research on this - I think there could be some commonality between this and the variance in individual reactions to avenin/oats - but it doesn't seem that anyone is interested in this question.

[squirmingitch]

2 hours ago, apprehensiveengineer said:

That's very interesting. I have personally noticed that I seem to be much more sensitive to barley as well. Beer-related CC is the bane of my existence.

I stopped drinking beer (which I loved!) long before I was gluten-free because I noticed that I would get tremendously ill every time I drank beer, but not other alcoholic beverages. I did sort of notice that I had more problems when I visited (and ate with) my parents, who are highly bread-centric, but this was not as apparent as the beer connection.

I tried to do research on this - I think there could be some commonality between this and the variance in individual reactions to avenin/oats - but it doesn't seem that anyone is interested in this question.

I think you could be right. Additionally, I have a theory that there are subsets of celiacs - some react worse to wheat, some to barley & perhaps some to rye. Those who react more strongly to wheat would be the largest group of course. 

When I drank beer, it felt like someone had taken a metal rake to the lining of my guts. 

I have noticed on here, that a number of people with dh have made remarks similar to yours & mine about their reactions to barley.

Growing up, we weren't a bread on the table at meals family. The only time bread was on the table was if it was appropriate to the main course such as garlic bread when we had spaghetti. However, there were plenty of other sources of wheat - cookies, cakes, sandwiches & such.

 

[apprehensiveengineer]

16 hours ago, squirmingitch said:

I think you could be right. Additionally, I have a theory that there are subsets of celiacs - some react worse to wheat, some to barley & perhaps some to rye. Those who react more strongly to wheat would be the largest group of course. 

When I drank beer, it felt like someone had taken a metal rake to the lining of my guts. 

I have noticed on here, that a number of people with dh have made remarks similar to yours & mine about their reactions to barley.

Growing up, we weren't a bread on the table at meals family. The only time bread was on the table was if it was appropriate to the main course such as garlic bread when we had spaghetti. However, there were plenty of other sources of wheat - cookies, cakes, sandwiches & such.

 

My family is British/Irish, so I was doomed ?. Every meal involved some sort of bread/baked good side. RIP cultural event participation.

The closest I could get to an answer on relative severity of reactions between the different grains was that the different HLA genes result in the immune system recognizing different parts of the proteins. So, I suppose, depending on which HLA genes a person has, their system may bind more strongly to certain grains in the gluten umbrella. From my limited understanding of the studies I read, it did seem to support the idea that there are sub-types of celiacs. I would think there are also implications about enzymatic-based therapies (ie. enzyme might not render the proteins unrecognizable for some HLA types, especially less common ones).

I myself am DQ2.2 homozygous, which is one of the less common genetic combinations (in Northern Europe, at least). Most of the research is done on people who are 2.5/X, or cell cultures derived from people with this genetic combination. I wonder what nuances we might be missing because of this limitation.

[Posterboy]

On 8/11/2018 at 9:05 PM, squirmingitch said:

For 7 years, I have been researching dh & I am a research freak.

Squirmingitch,

I have been researching Histamine receptors lately.

If you are not familiar with them they have recently found a  4th H receptor H4 that is important in Auto-immune conditions.

Here is a good overview on the different class of Histamine receptors for those who are not familiar with H2 receptors in general from Bristol University.

Open Original Shared Link

Or see this thread

they have recently figured out that in the auto-immune reactions the H4 receptor teams up with the other H receptors to put the auto-immune body in overdrive.

See this research that explains the H4 receptor role in Auto-immune diseases.

Open Original Shared Link

and this research explaining how the H1, H3, and H4 team up to trigger itching.

Open Original Shared Link

I don't know know if this was something you (squirmingitch) know already or not but if it is/was maybe it will help someone else.

It was news to me!

And if is something you didn't know already maybe it will give you a direction to turn in your future research.

I hope this is helpful but it is not medial advise.

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,

 

 

[Ging]

Best. Post. EVER.   

Thank you all for your info - Squirmingitch, you're a hero.  I'm new to this disease and you answered one of my biggest questions - why I was not finding more information on DH.  I've gotten so used to finding answers at my fingertips that it's incredibly odd to hit these blank walls with no good results.

So, the outbreaks I'm getting though I am gluten free and have been for at least a few months or more are probably going to continue with no real rhyme or reason and may or may not be related to being accidentally glutened because there's really no way to tell.  I can actually live with that as it does address my confusion.  I keep thinking I've been so careful, why am I breaking out?  And, how can I tell what's causing the outbreaks?  What am I doing wrong?  What can I do to stop/mitigate/avoid the outbreaks?  Now I know - keep doing my best and realize I'm probably going to keep getting outbreaks through no fault of my own (which is the road I was going down).  

I was lucky enough to get a solid diagnosis through biopsy and blood work.  A dermatologist I saw for the rash was able to get the results.  Would I be correct in assuming that seeing an allergist is fairly redundant at this point?  I'm not sure what else they could do for me - the dermatologist has seen several cases of DH and though he's not as up on the research as even I am, he does seem to know how to treat me.  I'm wondering mainly about complications in other areas from the DH and things to avoid which I have had no advice on from my doctor.  Would love any suggestions or advice from all of you.

Thanks again!!!  

Ging

[squirmingitch]

Oh thank you Ging but I am no hero. I am just a fellow traveler down the mind bending road dh can take us down.

Yes, in short, what you're saying is correct. You have to give it time & keep your diet pristine & that includes not eating out unless it's a totally gluten-free place. I often tell people that trying to predict the rash is a road to madness. It can't be done! As soon as you think you have it figured out, it will throw you a curve ball & you'll be tearing your hair out.

One suggestion I have that you can try is to go on the Fasano diet for a while & see if that helps you. That was what I had to do. Just google it.

As far as I know, there are no complications from having dh unless you get infection in lesions which never happened to me. 

[ktyler44]

But if you have DH, that means you are Celiac. And complications can come from that if you are still getting cross contaminated. You could still be doing damage to your small intestines. Right?

[Ging]

My understanding is, and I hope more experienced people will weigh in on this, that if you're like me with very little symptomology beyond the rash you won't be getting much damage.  Everybody's different and I know probably some will be getting damage/need to watch for some complications, but it seems highly variable from person to person.  My reading says some DH sufferers have little to no other issues - we just have the actual disease of Celiac with a different set of symptoms.  So we test positive but it manifests differently/can manifest differently. 

I do wonder what things will effect me like they do anyone with Celiac.  Iodine?  Do I need to be careful of that intake?  Or am I more 'typically' allergic and the results of my disease are going to be treated/behave in that manner - less concerns of malabsorption and the like since my intestine might be in significantly better shape.  (Must get an endoscopy to be sure at some point.)  It's all very nebulous and that makes it all very frustrating because so much of the time the answer is 'maybe' or 'don't know'.  Or at least that's what I've found so far.  The wealth of knowledge  on here is immense and I'm just scratching the surface.  Hope someone else responds.

 

[squirmingitch]

5 hours ago, ktyler44 said:

But if you have DH, that means you are Celiac. And complications can come from that if you are still getting cross contaminated. You could still be doing damage to your small intestines. Right?

This is absolutely correct.

Ging, no, it is not true that those with dh don't get much damage. We do get gut damage and we do get malabsorption & we do get neurological damage. I had tons of other symptoms going on but just didn't put them all together as all being connected to one disease. There are lots & lots of us like that. If I listed all my symptoms, it would take me the next 5 minutes to type them out. 99% of those were directly related to long term malabsorption. Did I have diarrhea every day? Well actually, that is debatable. Doctors asked me & I replied no b/c what I was thinking qualified as "D" was incorrect and no doctor ever explained it either. Seriously, it's not like they teach us in school exactly what constitutes a normal bowel movement & what is not normal & to what degrees. I can now say that I did not have normal bowel movements for years & years & years & years. I thought the "D" was the watery stuff & since I did not often have that, then I thought I did not have "D". Yes, I had cramping pain, sometimes wrenching pain going to the potty but it wasn't all the time.

You might be surprised at the things that just disappear after you've been strict gluten-free for say a year. I had no earthly clue some of the things I had been experiencing had anything to do with celiac disease & was shocked as can be when those things just disappeared. Some of them I didn't even notice at first b/c I was so focused on the things I knew were for sure connected. Here's an example:

As far back as I can remember, the big knuckle on my big toe on my right foot popped or made a cracking sound with every single step I took. Every step. Every step, every day, day or night, always. It was such a part of my life that I didn't even hear the pop any more. It was just what happened like the grass grows & the wind blows you know -- just totally normal for me. After being gluten-free for oh I don't know - a year - a year & a half - one day I noticed that my toe no longer popped when I walked. It hasn't in years! It's so weird living my life now without that. Something I had for as far back as my memory reaches is no longer a part of my life. It's very strange. I'm thrilled but it's very strange. Yes, I absolutely wonder what damage was done & what price I will pay in future but I'll cross that bridge when & if....

[Ging]

Quote

Ging, no, it is not true that those with dh don't get much damage.

Okay, is that true for everyone?  I've read some differing info and this is where I get confused.  I thought the implication was that it varied from person to person.  Some with more symptoms, some with less, some having more gut damage, others having next to nothing but rash.  

Conversely, I've thought the implication in some articles was that you had little symptoms but were still having the effects without knowing it; this sounds like what you are saying.  

I'd be grateful to have this cleared up because it's at the heart of what I need to know so I can move forward in the right direction.  My GI doctor seems to think the DH means the disease is out of his purview.  I wondered if that was the case or I still needed the endoscopy and to start paying more attention to that aspect that I've somewhat ignored.  

Like you, I believe I've had some symptoms and had no idea prior to this diagnosis.  I'm wondering if I need to change my whole approach and thought process about this... .