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Celiac Disease, Dh And Blood Results

Jonoh

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Jonoh Rookie
Jonoh
Posted

Hi guys,

Well, I'm here because I have a few questions for some people diagnosed with celiac disease. I'm currently undergoing tests and the like because of a myriad of symptoms, trying desperately to find a diagnosis. Of course, I'm very much aware that no one online will be able to provide me with a Dx and that's not what I'm looking for.

I just have a few questions regarding Celiac disease. Firstly, because of my symptoms I had some routine blood tests run. Thankfully these were all pretty much normal (bar a few anomalies) and the Doctor was happy to send me on my way, despite me still having symptoms *rolls eyes*. Anyway, my question is regarding whether if I was to be a Celiac, would something in these tests have indicated so? I had all the usual stuff done, thyroid, full blood count, lipids, liver, urea and electrolytes and so on. So yeah, would anything be abnormal in these tests that would indicate possible celiac disease?

And secondly, I have been suffering with these tiny blisters and bump things appearing all over my body - mainly legs, around hairline, chin, hands and sometimes arms. I usually feel an intense itch on the spot, so of course I go to scratch and then a bump will appear. If it doesn't itch, I get this stinging sensation and then the bumps will follow. I already know this does sound like DH (or from what I've researched it does), but I was wondering, because after the first itch/sting, the bump/blister won't usually itch much afterward, rather just taking absolutely forever to heal. Does this sound like something other than DH?

I actually managed to watch one of the bumps form today. I felt the usual itch, it was on my arm, I went and scratched, and noticed my arm had redness over it. The bump slowly raised, the redness dwindled, until it was no longer red, and just the bump remained. That bump has since gone down alot! To the usual barely visible size all my others have been. I do have a referral to a dermy, but I dunno when that's gonna happen - still awaiting a phone call - so any info on whether this sounds possibly like dermatitis herpetiformus or not would be very much appreciated.

Thank you in advance if you can take the time to reply :)

Jonoh.

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designerstubble Enthusiast
designerstubble
Posted

Hi there

I'm afraid I have no expertise about DH, I'm sure someone will post on this though. From all the reading I have done recently, I would certainly say that it's a good possibility... I had itchy bumps around my ears and jaw, mid back, elbows and backs of calfs. It was a mild itch, and once I scratched at it, it would 'scab' over and feel ok. It want severe but certainly there. Unfortunately I thought it was just a hormonal thing and never went to the doctors (I don't like going!). Since being gluten-free they have disappeared. Infact they disappeared almost immediately. I have no idea if this was DH.

Blood tests... As far as I know... You will n

designerstubble Enthusiast
designerstubble
Posted

Ooops! Pressed wrong button!

As I was saying!

As far as I know, you will not get any indication that you have celiac from your 'normal' blood tests. You MUST have your antibody levels checked specifically. Get checked for celiac!

Your blood work will however give a good indication of health. But I guess to see if you have any malabsorption issues (linked to celiac) you'd need specific bloods done ie. ferritin levels (anaemia), b12, vitD etc

Hope this helps, I'm certainly not most informed on here by far so hopefully someone else can give you a clearer answer.

All the best

Jonoh Rookie
Jonoh
Posted
  • Author

Ah thanks alot. Hopefully someone will be able to reply about the DH, but yeah I'll definitely ask the my doc about testing for Celiac/malabsorption issues. However, everywhere I've read that blood tests aren't really reliable for diagnosing Celiac?

designerstubble Enthusiast
designerstubble
Posted

From what I've read they are a good place to start... Particularly if they come back sky high with antibodies. There are always going to be false positives and false negatives... If the antibody test comes back more than 3 times the normal level then there's little chance of it being a false indicator (I read that on this forum).

Are you based in US? I know that you would request a full celiac panel blood work there, here in the UK they just laugh at you and provide the tTG test upon request. That's what I had done.

As for the DH, it's so specific to celiac that getting it looked at by a dermatologist ASAP would be great. I was reading on here the other day about someone with DH being diagnosed with celiac by the dermatologist virtually immediately !

Good luck :) you'll get there

sisterlynr Explorer
sisterlynr
Posted

Ah thanks alot. Hopefully someone will be able to reply about the DH, but yeah I'll definitely ask the my doc about testing for Celiac/malabsorption issues. However, everywhere I've read that blood tests aren't really reliable for diagnosing Celiac?

I have not had a EGD biopsy yet. I have had 3 biopsies of the lesions/blisters so they did not show DH. If you see a Dermatologist, he/she needs to test next to a lesion with immuno light, otherwise you will get a negative result. My blood test did not show the antibodies either.

I have had blisters come up on the sole of my right foot and along my left shoulder for years. I also had a major breakout on my scalp around 2000. None of my doctors could give me a diagnosis. I did find that if I popped the blister the horrible itch would subside (ones on my foot). I would sterilize a needle and drain the amber liquid and apply ointments. Most of the time they would fill back up with liquid and I would repeat the process. Eventually they would dry and peel dry skin. That could possibly be a reason why after you scratch, you get relief.

I had an outbreak on my hands in 2010 of blisters. Doctors still didn't diagnose DH Celiac. In March of 2012 I broke out over all of my body and after reading about DH, knew that was what I was suffering from, for sure. I asked my PCP to prescribe Dapsone and she did and advised me to start a gluten free diet. That was on Oct 20, 2012. Dapsone did work so we are quite sure that the rash is DH. I have inadvertently taken in gluten and I don't get 'new' blisters but where there were healing lesions, they become active with the itch. Dapsone has been a mind saver for me. I think if a doctor is familiar with DH they will be able to diagnosis from the look of the rash and other symptoms. None of the Derms that I saw diagnosed me. When I asked my PCP about the medication and she agreed, she told me she had 3 patients with DH but had never seen a case as bad as mine. Since I'm on medication and gluten free & iodine free, I doubt if I will see a positive dx but I don't need a dx. . . . Here are a couple of pics that I've taken and much of this has cleared up leaving dark red areas that are healing. I know it will be a long process but I'm on the road to full recovery!

http://i1323.photobucket.com/albums/u584/lindareading56/closerash1.webp

  • 3 weeks later...
Jonoh Rookie
Jonoh
Posted
  • Author

Ah thank you for the reply. I've finally received my referral for the derm so hopefully some light will be shed soon! Although, I must say I'm not expecting too much seeing as you didn't get dignosed so many times sisterlynr! lol

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