Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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 Celiac.com!
    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?

Link to comment
Share on other sites
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:

Link to comment
Share on other sites
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.

Link to comment
Share on other sites
captaincrab55 Enthusiast
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??

Link to comment
Share on other sites
JNBunnie1 Community Regular
JNBunnie1
  • Author
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.

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.

Link to comment
Share on other sites
captaincrab55 Enthusiast
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..

Link to comment
Share on other sites
JNBunnie1 Community Regular
JNBunnie1
  • Author
Posted

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.....

Link to comment
Share on other sites
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.)

Link to comment
Share on other sites
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 :-(

Link to comment
Share on other sites
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. 

Link to comment
Share on other sites
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.

Link to comment
Share on other sites
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.

Link to comment
Share on other sites
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.

Link to comment
Share on other sites
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.

Link to comment
Share on other sites
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.

Link to comment
Share on other sites
squirmingitch Veteran
squirmingitch
Posted

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

Link to comment
Share on other sites
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. ;)

Link to comment
Share on other sites
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

Link to comment
Share on other sites
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!

Link to comment
Share on other sites

Archived

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

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


  • Member Statistics

    • Total Members
      121,088
    • Most Online (within 30 mins)
      7,748
    Aventine
    Newest Member
    Aventine
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Anmol
      Recently Diagnosed Celiac- Need advice

      By Anmol · Posted

      Thanks this is helpful. Couple of follow -ups- that critical point till it stays silent is age dependent or dependent on continuing to eat gluten. In other words if she is on gluten-free diet can she stay on silent celiac disease forever?    what are the most cost effective yet efficient test to track the inflammation/antibodies and see if gluten-free is working . 
    • trents
      Recently Diagnosed Celiac- Need advice

      By trents · Posted

      Welcome to the community forum, @Anmol! There are a number of blood antibody tests that can be administered when diagnosing celiac disease and it is normal that not all of them will be positive. Three out of four that were run for you were positive. It looks pretty conclusive that you have celiac disease. Many physicians will only run the tTG-IGA test so I applaud your doctor for being so thorough. Note, the Immunoglobulin A is not a test for celiac disease per se but a measure of total IGA antibody levels in your blood. If this number is low it can cause false negatives in the individual IGA-based celiac antibody tests. There are many celiacs who are asymptomatic when consuming gluten, at least until damage to the villous lining of the small bowel progresses to a certain critical point. I was one of them. We call them "silent" celiacs".  Unfortunately, being asymptomatic does not equate to no damage being done to the villous lining of the small bowel. No, the fact that your wife is asymptomatic should not be viewed as a license to not practice strict gluten free eating. She is damaging her health by doing so and the continuing high antibody test scores are proof of that. The antibodies are produced by inflammation in the small bowel lining and over time this inflammation destroys the villous lining. Continuing to disregard this will catch up to her. While it may be true that a little gluten does less harm to the villous lining than a lot, why would you even want to tolerate any harm at all to it? Being a "silent" celiac is both a blessing and a curse. It's a blessing in the sense of being able to endure some cross contamination in social settings without embarrassing repercussions. It's a curse in that it slows down the learning curve of avoiding foods where gluten is not an obvious ingredient, yet still may be doing damage to the villous lining of the small bowel. GliadinX is helpful to many celiacs in avoiding illness from cross contamination when eating out but it is not effective when consuming larger amounts of gluten. It was never intended for that purpose. Eating out is the number one sabotager of gluten free eating. You have no control of how food is prepared and handled in restaurant kitchens.  
    • knitty kitty
      14 year old with Celiac & EOE still suffering...

      By knitty kitty · Posted

      Forgot one... https://www.hormonesmatter.com/eosinophilic-esophagitis-sugar-thiamine-sensitive/
    • trents
      50 YO Male Recently Diagnosed with Celiac Disease

      By trents · Posted

      Welcome to the forum community, @ekelsay! Yes, your tTG-IGA score is strongly positive for celiac disease. There are other antibody tests that can be run when diagnosing celiac disease but the tTG-IGA is the most popular with physicians because it combines good sensitivity with good specificity, and it is a relatively inexpensive test to perform. The onset of celiac disease can happen at any stage of life and the size of the score is not necessarily an indicator of the progress of the disease. It is likely that you you experienced onset well before you became aware of symptoms. It often takes 10 years or more to get a diagnosis of celiac disease after the first appearance of symptoms. In my case, the first indicator was mildly elevated liver enzymes that resulted in a rejection of my blood donation by the Red Cross at age 37. There was no GI discomfort at that point, at least none that I noticed. Over time, other lab values began to get out of norm, including decreased iron levels. My PCP was at a complete loss to explain any of this. I finally scheduled an appointment with a GI doc because the liver enzymes concerned me and he tested me right away for celiac disease. I was positive and within three months of gluten free eating my liver enzymes were back to normal. That took 13 years since the rejection of my blood donation by the Red Cross. And my story is typical. Toward the end of that period I had developed some occasional diarrhea and oily stool but no major GI distress. Many celiacs do not have classic GI symptoms and are "silent" celiacs. There are around 200 symptoms that have been associated with celiac disease and many or most of them do not involve conscious GI distress. Via an autoimmune process, gluten ingestion triggers inflammation in the villous lining of the small bowel which damages it over time and inhibits the ability of this organ to absorb the vitamins and minerals in the food we ingest. So, that explains why those with celiac disease often suffer iron deficiency anemia, osteoporosis and a host of other vitamin and mineral deficiency related medical issues. The villous lining of the small bowel is where essentially all of our nutrition is absorbed. So, yes, anemia is one of the classic symptoms of celiac disease. One very important thing you need to be aware of is that your PCP may refer you to a GI doc for an endoscopy/biopsy of the small bowel lining to confirm the results of the blood antibody testing. So, you must not begin gluten free eating until that is done or at least you know they are going to diagnose you with celiac disease without it. If you start gluten free eating now there will be healing in the villous lining that will begin to take place which may compromise the results of the biopsy.
    • Anmol
      Recently Diagnosed Celiac- Need advice

      By Anmol · Posted

      Hello all- my wife was recently diagnosed with Celiac below are her blood results. We are still absorbing this.  I wanted to seek clarity on few things:  1. Her symptoms aren't extreme. She was asked to go on gluten free diet a couple years ago but she did not completely cut off gluten. Partly because she wasn't seeing extreme symptoms. Only bloating and mild diarrhea after a meal full of gluten.  Does this mean that she is asymptomatic but enormous harm is done with every gram of gluten.? in other words is amount gluten directly correlated with harm on the intestines? or few mg of gluten can be really harmful to the villi  2. Why is she asymptomatic?  3. Is Gliadin X safe to take and effective for Cross -contamination or while going out to eat?  4. Since she is asymptomatic, can we sometimes indulge in a gluten diet? ----------------------------------------------------------------------------------------------- Deamidated Gliadin, IgG - 64 (0-19) units tTG IgA -  >100 (0-3) U/ml tTG IgG - 4   (0-5) Why is this in normal range? Endomysial Antibody - Positive  Immunoglobulin A - 352 (87-352) ------------------------------------------------------------------------------------------------ Thanks for help in advance, really appreciate! 
×
×
  • Create New...