Jump to content

  • Welcome to Celiac.com!

    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):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Not A Newby, Yet Still Very Confused!

JNBunnie1

By JNBunnie1
in Coping with Celiac Disease

Recommended Posts

JNBunnie1 Community Regular
JNBunnie1
Posted

Lately I've been reading a lot of posts stating that people absolutely, one hundred percent, do not have Celiac. They have non-celiac gluten intolerance. They know this because they've been tested for celiac in every way possible, all of which came up negative, but they feel better with no gluten. There is no set of symptoms specific to celiac vs non-celiac gluten intolerance, so you can't tell by what symptoms you have.

However, I myself have been tested in every way there is for Celiac. All came up negative. However, I get dermatitis herpetiformis when I've been glutened. Last I knew, DH equals Celiac-period. Am I wrong about this? Is the common wisdom about non-celiac gluten intolerance changing?

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

Celiac.com Sponsor (A8-M):


mushroom Proficient
mushroom
Posted

I think what is happening, bunnie, since Dr. Fasano finally came out with his pronouncement that there is such a thing as non-celiac gluten intolerance, that there is the automatic assumption by doctors that if their inaccurate tests say there is no celiac, then the patient is non-celiac gluten intolerant. Now we all know there are false negatives on the tests, and that you can be celiac when they are all negative, but the doctors won't give you a diagnosis without their tests being passed (well, there are some enlightened ones in whom the lightbulb goes on - mom and siblings have celiac, but all tests negative, mega symptoms, hey perhaps we missed it or there's not sufficient damage yet :o) So yes, DH does indeed mean celiac but it's amazing how many don't know this and would take the other test results as proof :blink:

dani nero Community Regular
dani nero
Posted

Yeah, that's a very interesting question. It would also be interesting to know if there are celiacs who don't get intestinal damage but only DH.

There probably is plenty of official documentation about the link between DH and celiac online.

captaincrab55 Collaborator
captaincrab55
Posted

However, I myself have been tested in every way there is for Celiac. All came up negative. However, I get dermatitis herpetiformis when I've been glutened. Last I knew, DH equals Celiac-period. Am I wrong about this? Is the common wisdom about non-celiac gluten intolerance changing?

Did you ever have a Biopsy for DH while it was flared up??

JNBunnie1 Community Regular
JNBunnie1
Posted
  • Author

Yeah, that's a very interesting question. It would also be interesting to know if there are celiacs who don't get intestinal damage but only DH.

There probably is plenty of official documentation about the link between DH and celiac online.

This is kind of an oxymoron (not trying to be rude, it is the only word I can think of!). It's not possible to have celiac without intestinal damage. You can have celiac without gastrointestinal SYMPTOMS, but there's still going to be damage.

My confusion was with the idea that Celiac can be ruled out completely. I thought it was understood that Celiac tests are fallible, and not entirely trustworthy. Lord knows there's enough people on here who've been tested up one side and down the other, and then later either come up with the DH rash or a repeated test that came up positive.

captaincrab55 Collaborator
captaincrab55
Posted

Yeah, that's a very interesting question. It would also be interesting to know if there are celiacs who don't get intestinal damage but only DH.

According to my Dermatologist that diagnosed me with DH, one can have DH without Gut issues... Tons of info out there to back it up.. I went gluten-free, my gut and many other issues related to Celiac went away... Other issues did show up as time passed.. btw, My blood lab came back Pos too..

JNBunnie1 Community Regular
JNBunnie1
Posted
  • Author

Did you ever have a Biopsy for DH while it was flared up??

No, oddly enough I never got the rash until at least 6 months after I went gluten free. We had purchased what I thought was a safe rotisserie chicken from our local grocery club, and boy did I get sick. Rash lasted for three weeks. I actually called my doctor to tell him, and he told me it was the Celiac and not to get it tested, because then I would have an offical diagnosis and it worried him that it might affect my health/life insurance possibilities down the road. I have no idea whether or not that is the case, but I trusted him, and said ok. I personally don't care if I'm doctor diagnosed, I don't need that to keep myself gluten free. I suppose it's remotely possible that what I get is a non-Celiac, non-DH skin rash that matches all descriptions of DH that I've read, but I don't really subscribe to that theory. Walks like a duck, quacks like a duck.....

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

Celiac.com Sponsor (A8-M):


mushroom Proficient
mushroom
Posted

My understanding, from the sum total of what I have read so I don't have a citation, is that it is possible to have the three forms of celiac (intestinal, neurological, skin) individually (in isolation) or in any combination. So a DH person may not have any intestinal damage. (That is just the way I understand it - this is not gospel.)

dani nero Community Regular
dani nero
Posted

This is kind of an oxymoron (not trying to be rude, it is the only word I can think of!). It's not possible to have celiac without intestinal damage. You can have celiac without gastrointestinal SYMPTOMS, but there's still going to be damage.

My confusion was with the idea that Celiac can be ruled out completely. I thought it was understood that Celiac tests are fallible, and not entirely trustworthy. Lord knows there's enough people on here who've been tested up one side and down the other, and then later either come up with the DH rash or a repeated test that came up positive.

I wonder what makes it so some people get intestinal damage symptoms and others don't feel a thing.

I think that the DH only shows up later after all the false negative tests is the fact that they've been glutened after a long period of being gluten-free, so the body is less used to the gluten and the immunity attacks harder. What didn't show up before shows up later because the reactions get worse.. something like that. I hope I understood the issue right. My IQ has been off balance recently :-(

JustNana Apprentice
JustNana
Posted

dani nero,

So your IQ has been off a bit lately, huh? That made me laugh...in empathy I assure you. I had minor GI symptoms but major itching, joint pain (especially hips), depression, debilitating fatigue.... all the rest of the non GI stuff. Diagnosed 2 months ago by bloodwork. The occasional big D with urgency stopped within a couple of weeks. However, we are sure that my intestinal villi are damaged enough that malabsorption is an issue. I have multiple vitamin and mineral deficiencies that are being treated, so yes you can certainly have damage without GI symptoms bad enough to mention to Dr. About six weeks ago I was dx'd with Hashimoto's too. ( the autoimmune type of hypothyroidism.). I would say that this is fairly common in celiacs.

I really feel for you. I don't have any words of wisdom except to say you are fortunate to have found the most well informed, compassionate bunch of folks right here. Keep coming, keep posting and take it one day at a time. 

JustNana Apprentice
JustNana
Posted

Oh and just to clarify my DH symptoms have been around as long as the other issues. I am some real improvement with the all over itching. Scalp and bottom are itch free pretty much.

Lisa Mentor
Lisa
Posted

I wonder what makes it so some people get intestinal damage symptoms and others don't feel a thing.

Open Original Shared Link

DH affects 15 to 25 percent of people with celiac disease, and these people typically have no digestive symptoms of the disease.

How does a disorder that damages the intestines show up on the skin? When a person with celiac disease consumes gluten, the mucosal immune system in the intestine responds by producing a type of antibody called immunoglobulin A (IgA), explains John Zone, M.D., chairman of the Department of Dermatology at the University of Utah School of Medicine. As IgA enters the bloodstream, it can collect in small blood vessels under the skin, triggering further immune reactions that result in the blistering rash of DH.

pricklypear1971 Community Regular
pricklypear1971
Posted

Yes, the NCGI label is interesting.

It gives docs "permission" to dx you with something for which there's no test for but symptoms match.

I wonder what will happen when there's a test??

I found a study that shows people with DH have some additional antibodies, in addition to IgA in the skin that makes us super fantastical special. So we are a subset of celiac disease, like there are neuro celiac disease patients, gastro celiac disease patients, etc. it doesn't mean we can't be all of the other stuff too-but we do have some particular antibodies that are found in DH only.

squirmingitch Veteran
squirmingitch
Posted

I read that same study Prickly & you explained it well. I'm not even going hunting for that study tonight but just backing up what you said.

And JNbunnie, yes dh = celiac. We just went through a whole thing on that in the dh forum with documentation. Problem is there hasn't been that much research done on dh alone. There hasn't been enough on celiac --- dh is behind celiac in research. IMHO, I feel that every celiac out there or almost every celiac out there will eventually at some point in time develop dh if they do not go gluten free. And just in the short time I have been here I have read threads by quite a few celiacs who have been gluten-free for sometimes 8 yrs. suddenly come up with dh when they get accidentally glutened.

Lisa Mentor
Lisa
Posted

IMHO, I feel that every celiac out there or almost every celiac out there will eventually at some point in time develop dh if they do not go gluten free. And just in the short time I have been here I have read threads by quite a few celiacs who have been gluten-free for sometimes 8 yrs. suddenly come up with dh when they get accidentally glutened.

I am glad that you have stated that the above quote is your IMHO (in my humble opinion), and not based on scientific fact.

:)

It's a topic that needs looking in too.

squirmingitch Veteran
squirmingitch
Posted

Absolutely Lisa, it's just a theory that I have. No scientific research, no scientific facts.

Lisa Mentor
Lisa
Posted

Absolutely Lisa, it's just a theory that I have. No scientific research, no scientific facts.

Who know what research will may come up with down the road. Perhaps you may be right. ;)

squirmingitch Veteran
squirmingitch
Posted

Who know what research will may come up with down the road. Perhaps you may be right. ;)

Perhaps. I actually was thinking tonight about starting an "I Wonder" thread for everyone to put their "I wonder" things on that they've thought about regarding celiac. Might be amusing at any rate.laugh.gif

Lisa Mentor
Lisa
Posted

Perhaps. I actually was thinking tonight about starting an "I Wonder" thread for everyone to put their "I wonder" things on that they've thought about regarding celiac. Might be amusing at any rate.laugh.gif

I understand your motivation. We have such good minds here who have taken the time to post with substantiated research.

See what happens. B) Amusing is good, too!

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. knitty kitty
      - knitty kitty replied to Sarah Grace's topic in Related Issues & Disorders
      21

      Headaches / Migraines and Hypoglycaemia

      @Sarah Grace, Thank you for the update! It's so good to hear from you! I'm glad Thiamine, B Complex and magnesium have helped you. Yes, it's important to take all three together. I had to quit eating cheese and nuts a long time ago because they triggered migraines in me, too. They are high in tyrosine, an amino acid, found also in fermented...
    2. Jmartes71
      - Jmartes71 posted a topic in Coping with Celiac Disease
      0

      Related issues

      Its been a complete nightmare dealing with all these health issues one thing after another and being told many different things.I am looking for a new primary care physician considering when I told my past doctor of 25 years I was diagnosed before any foods eliminated from my diet and now this year at age 54 no longer able to push considering Im always exhausted...
    3. trents
      - trents replied to Sarah Grace's topic in Related Issues & Disorders
      21

      Headaches / Migraines and Hypoglycaemia

      My migraines generally have their onset during the early morning hours as well. Presently, I am under siege with them, having headaches all but two days so far this month. I have looked at all the things reported to be common triggers (foods, sleep patterns, weather patterns, stress, etc.). Every time I think I start to see a pattern it proves not to pan...
    4. Scott Adams
      - Scott Adams replied to jessicafreya's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Tamale ingredients

      These are labeled gluten-free: https://www.amazon.com/Corn-Husks-Tamales-Authentic-Flavorful/dp/B01MDSHUTM/
    5. Wheatwacked
      - Wheatwacked replied to Roses8721's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      GI DX celiac despite neg serology and no biopsy

      Just a gluten free diet is not enough. Now you have to identify and replenish your malnutrition. Celiac disease is co-morbid with malabsorption syndrome. Low vitamin D, Low Thiamine caused Gastointeston Beriberi, low choline, low iodine are common the general population, and in newly diagnosed Celiacs in the western culture its is more likely. It takes...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,145
    • Most Online (within 30 mins)
      7,748
    Kundrey
    Newest Member
    Kundrey
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • knitty kitty
      Headaches / Migraines and Hypoglycaemia

      By knitty kitty · Posted

      @Sarah Grace,  Thank you for the update!  It's so good to hear from you!  I'm glad Thiamine, B Complex and magnesium have helped you.  Yes, it's important to take all three together.    I had to quit eating cheese and nuts a long time ago because they triggered migraines in me, too.  They are high in tyrosine, an amino acid, found also in fermented foods like sauerkraut and red wine.   I found taking Tryptophan very helpful with migraines.  Tryptophan is a precursor of serotonin and people with migraines are often low in serotonin.  (Don't take tryptophan if you're taking an SSRI.)     This recent study shows tryptophan really helps. The association between dietary tryptophan intake and migraine https://pubmed.ncbi.nlm.nih.gov/31254181/   For immediate respite from a migraine, try smiling REALLY BIG, mouth closed, tongue pressed against roof of mouth, and crinkle up your eyes like you just heard or saw the funniest thing...  This causes an endorphin release in the brain.  Usually it's the funny event, then the endorphin release and then the smile.  Smiling first makes the endorphin center think it missed something and it catches up quickly by releasing endorphins after the big crinkle eyed smile.  Must make crinkly eyes with smile or it won't work.  If you do this too frequently within a short time frame (several hours), you can deplete your endorphins, but you'll make more in a couple of hours, so no worries. Get your thyroid checked, too.  Migraines are also seen in low thyroid function (Hashimoto's or hypothyroidism).  Celiac and thyroid problems go hand in hand.   Vitamin D helps, too.  Low Vitamin D is found in migraine.   I'm so glad you're doing better.  
    • Jmartes71
      Related issues

      By Jmartes71 · Posted

      Its been a complete nightmare dealing with all these health issues one thing after another and being told many different things.I am looking for a new primary care physician considering when I told my past doctor of 25 years I was diagnosed before any foods eliminated from my diet and now this year at age 54 no longer able to push considering Im always exhausted, leg pain , stomach,skin and eye issues,high blood pressure to name a few all worsen because I was a  school bus driver and few years until my immune system went to hell and was fired because of it.Im still struggling now, Im sibo positive and been told im not celiac and that I am.I have a hernia and dealing with menopause. Its exhausting and is causing depression because of non medical help. Today I saw another gastrointestinalist and he said everything im feeling doesn't add up to celiac disease since my ITg levels are normal so celiac disease is under control and it's something else. I for got I had Barrett's esophagus diagnosed in 2007 because recent doctors down played it just like my celiac disease. Im currently looking for a pcp in my area because it is affecting me personally and professionally. Im told since celiac looks under control it's IBS and I need to see a therapist to control it. Gastrointestinalist around here think only food consumption and if ITG looks normal its bit celiac disease it's something else. Is this right? This is what im being told. I want medical help but told its IBS.Im feel lost by " medical team "
    • trents
      Headaches / Migraines and Hypoglycaemia

      By trents · Posted

      My migraines generally have their onset during the early morning hours as well. Presently, I am under siege with them, having headaches all but two days so far this month. I have looked at all the things reported to be common triggers (foods, sleep patterns, weather patterns, stress, etc.). Every time I think I start to see a pattern it proves not to pan out in the long run. I'm not sure it's any one thing but may, instead, be a combination of things that coalesce at certain times. It's very frustrating. The medication (sumatriptan or "Imatrix") is effective and is the only thing that will quell the pain. NSAIDs, Tylenol, even hydrocodone doesn't touch it. But they only give you 9 does of sumatriptan a month. And it doesn't help that medical science doesn't really know what causes migraines. They know some things about it but the root cause is still a mystery.
    • Scott Adams
      Tamale ingredients

      By Scott Adams · Posted

      These are labeled gluten-free: https://www.amazon.com/Corn-Husks-Tamales-Authentic-Flavorful/dp/B01MDSHUTM/
    • Wheatwacked
      GI DX celiac despite neg serology and no biopsy

      By Wheatwacked · Posted

      Just a gluten free diet is not enough.  Now you have to identify and replenish your malnutrition.  Celiac disease is co-morbid with malabsorption syndrome.  Low vitamin D, Low Thiamine caused Gastointeston Beriberi, low choline, low iodine are common the general population, and in newly diagnosed Celiacs in the western culture its is more likely.  It takes time to heal and you need to focus on vitamins and minerals.  Gluten free foods are not fortified like regular processed foods.  
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.