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Not A Newby, Yet Still Very Confused!

JNBunnie1

By JNBunnie1
in Coping with Celiac Disease

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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?

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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.....

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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!

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