Possible Dh

[AliPringle]

Hi everyone this will probably be a ramble but I'm honestly fed up.

A bit of background -

At 13/14 diagnosed with raynauds

At 15/16 horrible itch rash developed in both palms.

I am now 30 and struggling with numerous niggly complaints that alone I probably wouldn't even think about but put together they are adding up.

The only symptoms present now that have been there through out are the raynauds and the rash.

The rash is incredibly itchy , starts as red bumps, them little blisters which are quickly scraped off. At its worst I had to bandage my hands through the day and wear gloves to bed as I had scraped them so raw. Steroid creams had limited success with controlling this and symptoms would come and go. I seen a dermatologist in my teens but recieved no diagnosis or further treatment.

In mid 20s I decided to loose weight and list 5 stone. Throughout this period the rash improved but never disappeared. This remains the case now. In the past 2 weeks I have had 2 flares although they are nowhere near as severe as they used to be.

However for the past 18 months I have just been feeling really awful. The main issue is major fatigue i will sleep 9 hrs of an evening and still fall asleep through the day if the opportunity presents. Along with this I also have the following issues

Hair falling out

Bloating, bubbling and wind

Minor constipation

Extremely dry eyes (to the point I can no longer wear lenses)

Night Vision problems

Aches and pains (muscular and joints)

Irritation/moodswings

Raynauds

General sensitivity to cold

Now twice in the past 6 weeks I've had bloods done and had a no to coeliac. Also had a coeliac test done maybe 5 years ago which said the same.

My dad suffers from vitiligo and scleroderma and my dad's aunt from coeliac.

I spoke to my Dr after last bloods and she's baffled and is currently going back through records to the raynauds diagnosis to see if it sheds light and I'm back to see what she thinks on Tuesday.

My gut instinct is to diagnose the hand issues, shall I push for biopsies ?

Sorry for the ramble

Ali

[cyclinglady]

But did you have the complete celiac panel? Here it is:

-tTG IgA and tTG IgG

-DGP IgA and DGP IgG

-EMA IgA

-total serum IgA and IgG (control test)

-AGA IGA and AGA IgG - older and less reliable tests largely replace by the DGP tests

-endoscopic biopsy - make sure at least 6 samples are taken

(Source: NVSMOM -- )

If my celiac disease savvy doc had not ordered the complete panel, I would have been in diagnostic limbo land. I had only one positive on the DGP which is usually not included in the celiac disease initial screen test. Having another autoimmune disorder may have messed with your results. I would ge copies of your lab results.

Welcome to the forum and let us know how it goes!

[squirmingitch]

Ask for a dh biopsy. Tell them if nothing else you want to rule out celiac disease. Inform your doc that 60% of celiacs who have dh test negative on the celiac blood panel. The dh biopsy must be taken on clear skin adjacent to an active lesion.

[cyclinglady]

Ah! Forgot that in this thread. Thanks, Squirmingitch!

[AliPringle]

Thanks guys, I'll quiz on what's been done already, and push for more if necessary! It's getting ridiculous, gone on far to long. Unfortunately this does not seem unusual!

Ali

[squirmingitch]

Ah! Forgot that in this thread. Thanks, Squirmingitch!

No, it's good to have both the bloods & the dh biopsy done. You never know when 1 will turn up positive. It is important to see if she got the FULL celiac panel done. We know how docs like to skip some of the tests in it. 

[AliPringle]

It's all rather a minefield, I don't know why they just don't run full panels on stuff, it doesn't seem to be just coeliac this isn't done for. I'm just gonna have so sit there and not move till they move further with this. But now the stupid rash has gone again!

Ali

[squirmingitch]

If it's dh rash it can come & go as it pleases. 

[AliPringle]

Yes it does, very inconvenient , this has been the case for the past 15 years now.

Ali

[ravenwoodglass]

I am looking at that adorable little person in your photo which brings me to my question. Did your increase in symptoms that you mentioned happen after you gave birth? Celiac disease will often come on or symptoms can worsen after you have a stressor like pregnacy and delivery. 

There can be a fairly high rate of false negatives with celiac testing.  This, as was mentioned, happens for folks with DH fairly commonly unfortunately. When you are done with all celiac related testing it might be a good idea to do the diet strictly for a few months and see if your symptoms resolve.  Sometimes the body can give us answers that testing doesn't.

Hope you get some relief soon.

[AliPringle]

Hi

Yes things have kicked of since having my daughter who is now 3.

The rash and raynauds have always been there and minor (very minor) concerns of the stomach for maybe 5 years. But everything else has massively reared its head in the past 2 years.

18 months ago went to drs was told all was ok, changed my pill and accepted their view. 2 months ago went back as was feeling terrible and I'm pushing now until I get somewhere!

Thanks

Ali

[AliPringle]

Ps I've not gone strictly gluten but when I clean my act up I do feel much better.

This is something I've considered and if things go nowhere I may have to do off my own back!

Ali

[squirmingitch]

You have to keep eating gluten for testing & that includes dh testing.

 

Thing is, if you get a dx it will be much easier to get your daughter tested on a regular basis as she should be.

[AliPringle]

Hi I know it's important to keep gluten in the diet for diagnosis, which is why I'm continuing to eat it, luckily I don't have really severe reaxtion. Here in the UK if I get diagnosis I'll be able to get essestials on prescription and as you say for DD in the future it may be beneficial

Dr has looked through the notes and the diagnosis ( in 2005!) on Record was dermatitis?? Excema?? And no further treatment needed currently that was when I was 19.

The Dr says she's stumped and although they're running bloods again (again vague as to what exactly) my file is being taken to some sort of meeting/panel for complicated (ie I've not got a clue) patients.

I showed her photos of my 3 recent breakouts but I'm being referred to a rheumatologist not a dermatologist ? God knows where it goes from here

Ali