Jump to content

  • You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):

Celiac Disease, Dh And Blood Results

Jonoh

Recommended Posts

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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      134,084
    • Most Online (within 30 mins)
      10,442
    Melvac
    Newest Member
    Melvac
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Aretaeus Cappadocia
      Edy's and Dreyer's ice cream

      By Aretaeus Cappadocia · Posted

      Sigh. I posted this yesterday based on the Safeway website. I went back again today to their website to double check. On the page where they are selling Vanilla Bean flavor, it has a distinct Certified Gluten Free label. Other flavors on the Safeway website didn't have the gluten-free statement. Today I went into the store. None of the flavors I looked at, including Vanilla Bean, have a Gluten Free statement. Is it safe? Who knows. The ingredients are either safe or nearly safe (some have "natural flavor"). There are warnings about "contains milk and soy" but not about wheat - this implies they are safe, but again, who knows. On the other hand, every flavor I checked of their Slow Churn line of ice creams has wheat as an ingredient. 100% not safe.
    • knitty kitty
      Edy's and Dreyer's ice cream

      By knitty kitty · Posted

      Do keep in mind that many of the newly diagnosed have lactose intolerance.  This is because the villi lining the intestinal tract are damaged, and can no longer make the enzyme lactAse which breaks down the milk sugar lactOse.  When the villi grow back (six months to two years), they can again produce the enzyme lactAse, and lactose intolerance is resolved.  However, some people (both those with and without Celiac Disease) are genetically programmed to stop producing lactase as they age.   Do be aware that many processed foods, including ice cream, use Microbial Transglutaminase, a food additive commonly called "meat glue," used to enhance texture and flavor.  This microbial transglutaminase has the same immunogenicity as tissue transglutaminase which the body produces in response to gluten in people with Celiac Disease.  Tissue Transglutaminase (tTg IgA) is measured to diagnose Celiac Disease in blood tests.  Microbial Transglutaminase acts the same as Tissue Transglutaminase, causing increased intestinal permeability and inflammation.   New findings show that microbial transglutaminase may be able to trigger Celiac Disease and other autoimmune and neurodegenerative diseases.   Microbial Transglutaminase is not required to be listed on ingredients labels as it's considered a processing aid, not an ingredient in the U.S.  Microbial Transglutaminase has been GRAS for many years, but that GRAS standing is being questioned more and more as the immunogenicity of microbial transglutaminase is being discovered. Interesting Reading:  Microbial Transglutaminase Is a Very Frequently Used Food Additive and Is a Potential Inducer of Autoimmune/Neurodegenerative Diseases https://pmc.ncbi.nlm.nih.gov/articles/PMC8537092/
    • Aretaeus Cappadocia
      Edy's and Dreyer's ice cream

      By Aretaeus Cappadocia · Posted

      There is a 10 year old post in this forum on Edy's and Dreyer's ice cream. The information is somewhat outdated and the thread is closed to further comment, so here is a new one. Edy's And Dreyer's Grand Vanilla Bean Ice Cream - 1.5 Quart is labeled "Gluten Free". This is a different answer than years gone by. I don't know the answer for any other flavor at this moment. On 1 May, 2026, Edy's website says: "As a general rule, the gluten in Edy's and Dreyer's® frozen dessert products is present only in the added bakery products, such as cookies, cake or brownies. We always label the eight major food allergens on our package by their common name. We recommend to always check the label for the most current information before purchasing and/or consuming a product. The exception to this rule is our Slow Churned French Silk frozen dairy dessert, which contains gluten in the natural flavors." https://www.icecream.com/us/en/brands/edys-and-dreyers/faq It seems that Edy's and Dreyer's are more celiac-friendly than they were 10 years ago. Once I found enough information to make today's buying decision, I stopped researching.
    • Aretaeus Cappadocia
      EDG 3 years ago fine, now it shows focal villous blunting,

      By Aretaeus Cappadocia · Posted

      probably not your situation @Mimiof2, but allow me to add one more to @trents list of celiac-mimics: "olmesartan-induced sprue-like enteropathy"  
    • knitty kitty
      Terrible Neurological Symptoms

      By knitty kitty · Posted

      My dad had an Abdominal Aortic Aneurysm.  Fortunately, it was discovered during an exam.  The doctor could feel my dad's heart beating in his stomach/abdomen.  The aneurysm burst when the doctor first touched it in surgery.  Since he was already hooked up to the bypass machine, my dad survived ten more years.  Close call! Triple A's can press on the nerves in the spinal cord causing leg pain.  I'm wondering if bowing the head might have increased the pressure on an aneurysm and then the nerves.   https://gulfcoastsurgeons.com/understanding-abdominal-aortic-aneurysm-symptoms-and-causes/ Abdominal Aortic Aneurysm Presenting as a Claudication https://pmc.ncbi.nlm.nih.gov/articles/PMC4040638/
×
×
  • Create New...