That Doh! Moment and DH

[meridian]

About three years ago I started to notice some skin changes starting on my upper thighs - patches of skin which would have circular discolourations which turned rough. Having moved to a new climate I originally thought it might be dry skin. In the following two years the skin disruption worsened. The spots would look red and circular, and it itched terribly. The medium and larger ones were very slow to heal. There was symmetry in outbreak areas, always. Often I could tell before I would have an outbreak, I would feel tired and irritable, my skin would burn and sting before the spots would visibly appear.

About a year or so into the skin issues I was diagnosed with and treated for chronic idiopathic urticaria (CIU) - unknown origin longterm hives, but these were not hives! I was prescribed antihistamines (I've been on a few different types), hydrocortisone cream, and later an anti-microbial lotion. Over the past three years my skin problem has gotten worse, spreading to my lower back, stomach, upper back, chest, lower thighs, and forearms. (Will see about transferring what skin pics I do have from my phone if anyone is really curious. Terribly awkward to get good photos and focus.)

At the same time my fatigue increased and my ability to concentrate decreased. Brain fog is really the best term for it for me. I could be in the middle of a conversation and then blank, unable to really convey what I was thinking in intelligible words. Last month I had testing done for fatigue, the person who ordered the tests asked about family history of celiac, but I could not confirm any. She switched me on to yet another antihistamine. The results for the fatigue panel came back normal (don't know what they ran so I'm requesting a copy of my results). But, the questioning about celiac stuck in the back of my mind. Finally it clicked, I was away travelling and was in a situation where I had to eat pub type food at a restaurant one evening (breaded chicken sandwich, with lots of preprepared english mustard). In a few hours after eating I went from mostly okay to having no energy, dizzy, stomach upset, and the worst skin outbreak I've ever had. It took me way too long to put these things together.

Somewhat fortuitously, I was having some side effects with my antihistamine and needed to go back to get my prescription switched. (I was on the CIU level dosage of 180 mg fexofenadine/allegra a day, which cause heart flutter/palpitations.) I had a diet which contained gluten, but was unsure if it would be enough - aside from a weakness for cinnamon rolls, I naturally tend to avoid heavily gluten products. I went onto a gluten challenge, just because I wanted to be certain and the doctor which ordered this round of tests didn't object. Well, that was hell. Fatigue worsened, dizziness, vertigo, nausea, stomach upset (vacillating between constipation and diarrhoea) and my skin freaked out. Had a few scary moments where I nearly fell or fell and managed to catch myself. Though I had had sores on my thighs and behind my knees previously, there were now tiny blisters on my knees, and on my arms! (Too small to get a decent picture of with my old camera.)

Last week I had blood drawn for a celiac panel - I'm currently living in the UK so I think it is whatever standard panel is done here through the NHS. By that point I was miserable, was even slightly late for my appointment because I had to bolt to the toilet right before (thanks stomach ). I should have results in a week. The nurse who did the blood test was the same who did my fatigue one. She told me to stop gluten that day. I live in a rural area and would have reasonable notice before further testing to go back on gluten - it won't be quick, so I doubt it would be an issue. (And, as a PhD candidate in the writing up year, I really can't afford to lose more time!)

So I cut out gluten. Wow, has it been a night and day change. Yes I'm still physically tired, but my energy levels are improving, my skin hasn't been too horrid, the blisters have mostly healed. Less aches and pains, feeling more rested when I wake. My mood has improved, I'm not dizzy all the time! The nausea has gone, I feel full on less, and no more ravenous gnawing hunger pains. All the fingers and toes crossed for the test results because this makes too much sense. It is only in the past few days that I have realised how bad the past couple of years have been, I somehow adapted to a new normal that should not have been okay for me at all. Throughout the gluten challenge (and slightly before) through to now I have kept a record of everything I've eaten/drank and how I've been feeling. I've actually found myself looking over today it trying to remind myself that this isn't all in my head.

Tl;dr: Longterm worsening skin issues and a doh! moment where I realised that a bunch of other symptoms might mean celiac and/or dh, currently waiting for blood test results.

*I was a bit torn between posting here and in the testing and symptoms section, but given my situation and the emphasis on skin symptoms the DH section seemed more appropriate.

[cyclinglady]

Welcome!  Keep us posted on your celiac blood test results.  Just note that  some celiacs (especially those who manifest with DH) can have negative blood test results.  A special skin biopsy can diagnose a celiac too.  

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[Jmg]

Hello and welcome

Congratulations! You figured this out a lot sooner than myself or many others did. Because this:

9 hours ago, meridian said:

I somehow adapted to a new normal that should not have been okay for me at all.

Is one of the most insidious aspects of gluten to me. It starts subtly and you come to accept the different symptoms as part of getting older or fatigue etc. 

9 hours ago, meridian said:

 Throughout the gluten challenge (and slightly before) through to now I have kept a record of everything I've eaten/drank and how I've been feeling. I've actually found myself looking over today it trying to remind myself that this isn't all in my head.

Good, that's useful info to have if your diagnosis is not conclusive. 

9 hours ago, meridian said:

She told me to stop gluten that day. I live in a rural area and would have reasonable notice before further testing to go back on gluten - it won't be quick, so I doubt it would be an issue. (And, as a PhD candidate in the writing up year, I really can't afford to lose more time!)

Ok, just be aware that if the test is positive normal nhs procedure will be referral to a gastroenterologist to confirm celiac. That would entail an endosopy and a gluten challenge, which may prove more unpleasant than the one you experienced.

That said I think you have your answer and the decision on testing will be one to consider when it comes. There are positives on both sides and no guarantees. I had all the symptoms you describe (skin issues were different) and more but tested negative. It didn't matter, by that point I knew I'd be gluten free for life. 

There's a lot to learn on the diet and this topic may be of interest:

As a Brit consider joining Coeliac UK, they produce a guide to gluten-free foods which is very useful to have and available in app form so you can check on the go. You can also swap info with other UK based forum members here: https://www.celiac.com/forums/topic/111450-new-to-this-any-celiacsgluten-free-in-uk/?page=3#comment-974911

 

Best of luck and welcome once again. I hope you find this forum as useful as I have. I was still finding symptoms on here that I'd never attributed to gluten a year after going gluten-free!

Matt

 

[meridian]

Thank you both for the welcome and taking the time to read my rather long post!

16 hours ago, cyclinglady said:

Welcome!  Keep us posted on your celiac blood test results.  Just note that  some celiacs (especially those who manifest with DH) can have negative blood test results.  A special skin biopsy can diagnose a celiac too.  

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Thanks, and I will. I've been lurking around for a while and doing tons of research. Having university access to medical journals has been both a blessing and a curse timesink. (As an aside, I discovered I have both of the more commonly associated genetic markers, heterozygous both HLA DQ2 and 8.)

I'll admit the possibility of a negative blood test result is making me the most nervous right now! I really have had to fight to get doctors to listen to me. Really hoping they'll go the skin biopsy route.

13 hours ago, Jmg said:

Ok, just be aware that if the test is positive normal nhs procedure will be referral to a gastroenterologist to confirm celiac. That would entail an endosopy and a gluten challenge, which may prove more unpleasant than the one you experienced.

That said I think you have your answer and the decision on testing will be one to consider when it comes. There are positives on both sides and no guarantees. I had all the symptoms you describe (skin issues were different) and more but tested negative. It didn't matter, by that point I knew I'd be gluten free for life. 

Yeah, the referral bit might be a nightmare. I love the NHS, but in rural Wales (like most rural places) it can be a pain to get non-emergency specialist appointments. I figure I'll keep off gluten as much as I can until I get results in a week, then decide from there. As I said just above I'm really hoping they'll go the skin biopsy route as I suspect it will be more quickly done.

14 hours ago, Jmg said:

As a Brit consider joining Coeliac UK, they produce a guide to gluten-free foods which is very useful to have and available in app form so you can check on the go. You can also swap info with other UK based forum members here: https://www.celiac.com/forums/topic/111450-new-to-this-any-celiacsgluten-free-in-uk/?page=3#comment-974911

Yeah, I was thinking of joining just for their app. Though I wish they'd just charge separately for it!

I'm actually an American, not a Brit, just over in the UK for school, for now at least. One good thing is that the town I currently live in is rather celiac friendly. Visiting home is going to be interesting though.

[squirmingitch]

Hi Meridian & welcome!

I'm sorry to tell you but for the dh biopsy you STILL will have to do a gluten challenge. Sad but true. If you've been eating gluten free then the biopsy will come up false negative. 

BTW, once you stop eating gluten doesn't mean the rash will magically disappear & never pop up again. The antibodies are deposited under the skin & it takes time for them to dissipate. You can have outbreaks even when you haven't ingested any gluten until all those rotten little antibody grenades have left from under your skin. How long? Varies with the individual. Maybe a few weeks, maybe years.

[meridian]

20 hours ago, squirmingitch said:

Hi Meridian & welcome!

I'm sorry to tell you but for the dh biopsy you STILL will have to do a gluten challenge. Sad but true. If you've been eating gluten free then the biopsy will come up false negative. 

Thanks for the welcome! I am definitely well aware I will have to do a gluten challenge before any further testing.

At the moment however, its a wait and see until I get my blood test results back and then deal with decision making/scheduling regarding further testing. Until then (hopefully next week) I can at least enjoy how I'm currently feeling - which is doing more for my mental health than anything else right now!

From there, I'll have to discuss further testing with my doctor. Frustratingly, having a formal diagnosis would be helpful in dealing my university.

 

20 hours ago, squirmingitch said:

BTW, once you stop eating gluten doesn't mean the rash will magically disappear & never pop up again. The antibodies are deposited under the skin & it takes time for them to dissipate. You can have outbreaks even when you haven't ingested any gluten until all those rotten little antibody grenades have left from under your skin. How long? Varies with the individual. Maybe a few weeks, maybe years.

Yeah, my skin irritation has not completely disappeared, nor do I expect it to. (Particularly given that some of the peer reviewed lit suggested up to two years even after going gluten free!) To be honest, the skin issues have been tolerable compared to the fatigue - something I did not realize until going off gluten.

[meridian]

Whelp, blood test came back as "satisfactory"  and I will be getting the specific numbers and details later on today on paper. (Also so I can find out which tests and if IgA deficiency was checked for.)

I had been gearing up to fight this issue with the doctor, but we actually had a lovely chat today on the phone about it. I had only seen this doctor once - when he ordered the blood test - so this was a really pleasant surprise. (I have found that some of the doctors at this practice are considerably less better at listening than others!) He agrees that I'm on to something here and seems very willing to work with me regarding diagnosis and treatment.  We went over my various options and I explained the shocking improvement in my symptoms on the gluten free diet.

Based on a discussion of the options, we decided that I should do a gluten challenge (eugh dread 6 weeks) and then another blood test. From there, referral to gastroenterologist and dietician (neither referral will need to be based on the blood test results thankfully). I'm hoping I can make it that long but I suspect if the symptoms get too bad we may go straight to the referral, which was one of the options suggested in today's conversation.

Ugh, brain fog, vertigo and queasiness, I did not miss them. On the upside, I might have the opportunity to try to get better pictures of my skin.

[GFinDC]

2 hours ago, meridian said:

we decided that I should do a gluten challenge (eugh dread 6 weeks) and then another blood test.

Hi Meridian,

A better plan would be to get the skin biopsy done from an area near the (DH?) lesion.  They check the skin biopsy for the IgA antibodies that cause the DH rash.  A diagnosis of DH is a diagnosis of celiac disease as only people with celiac get DH.

It's not bad to get the blood antibodies full celiac panel.  But the quicker way to diagnose DH is through the skin biopsy.  Also, people with DH don't tend to test accurately on the blood antibodies possibly because the antibodies aren't in the blood so much but are in the skin?  Somebody should really figure this stuff out for us!

[meridian]

3 hours ago, GFinDC said:

Hi Meridian,

A better plan would be to get the skin biopsy done from an area near the (DH?) lesion.  They check the skin biopsy for the IgA antibodies that cause the DH rash.  A diagnosis of DH is a diagnosis of celiac disease as only people with celiac get DH.

It's not bad to get the blood antibodies full celiac panel.  But the quicker way to diagnose DH is through the skin biopsy.  Also, people with DH don't tend to test accurately on the blood antibodies possibly because the antibodies aren't in the blood so much but are in the skin?  Somebody should really figure this stuff out for us!

The skin biopsy would actually be my preferred plan. But to be fair I may not manage to stay on gluten long enough (and at a high enough level) for either option to be practical. I'm going to give it until Monday with gluten and if it's this bad call my doctor back because there is no way in hell I can do 6 weeks if it's going to be like today was.

It seems like it takes a higher level of gluten than I was consuming (in the past year or so for example) for the actual fluid filled blisters to appear - until I intentionally upped my gluten intake I only had lesions/red spots.

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I now have a copy of the test results and am slightly surprised. Two pages, one of which says:

"IgA"   3.39 g/L  (0.80 - 2.80)  "High"

with no other useful information and the page other which says:

Satisfactory - No Action Needed

"Tissu transglutaminase IgA lev"   1.5  U/ml  (0.0 - 10.0)
Will be filed as: 1.5 U/ml
@ Anti-IgA TTG Antibodies testing performed at [place]

It goes on to mention the assumption that the patient followed NICE guidelines - since I'm in the UK - of a full gluten containing diet for at least 6 weeks, negative results may occur with IgA deficiency, negative TTG result excludes coeliac in 97% of cases, etc.

They did not mention the high IgA when I spoke with them on the phone so I'm glad I got the paper results. Still glad I took a brief time off gluten though - mental health benefits of feeling good for a while and the reminder that this is not all in my head.