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Not A Newby, Yet Still Very Confused!
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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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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:

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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.

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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??

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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.

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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..

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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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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.)

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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 :-(

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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. 

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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.

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

http://www.celiac.nih.gov/Dermatitis.aspx

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.

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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.

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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.

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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.

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

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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. ;)

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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

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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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    • Hi everyone, I've been reading this forum sporadically and have some questions of my own. I'm in my 40s and was diagnosed with celiac last December by biopsy and blood work after months of tests by my primary and then a gastro. My husband, around the same age as me, was dx'd with stage 4 cancer a month later, so admittedly it's took me longer than I'd have liked to learn about celiac. Now I feel pretty on top of my diet. I mostly make my own food - proteins and veggies, with some certified gluten-free snacks in the mix - and am pretty strict about what I will/won't eat at friend's houses or in restaurants (I prefer to go to dedicated gluten-free kitchens whenever possible). I'm doing okay on the diet, but still getting glutened every so often, usually when I let me guard down outside the home. I also periodically see my primary and a naturopath (who happens to have celiac!), but still, I have many questions if anyone would care to answer:

      -FATIGUE. I'm still so tired, fatigued so much of the time. My doctors blame this on the stress of my husband's diagnosis and my periodic trouble sleeping. But even during weeks where I'm sleeping enough (8-10 hrs a day), eating right, exercising as I can, trying to keep stress at bay, I'm still so bleeping tired. Maybe not when I wake up, but by late afternoon. Often my legs even feel weak/wooden. Has anyone else experienced greater fatigue early on after being diagnosed? This will pass, yes? I know I could cut out the sweets and that could help, but also, being a caregiver is hard and sometimes it's nice to eat your feelings between therapy sessions.  

      -SYMPTOMS CAUSED BY FATIGUE? Sometimes I'll have other "feels like I've been glutened" symptoms if I haven't gotten enough sleep, though I'm trying so hard to sleep at least 8 hours a night these days. Hasn't happened in a while thankfully, but there was a point this summer where my insomnia was bad and my arms were achy and I had some crazy flank/back pain I'd never experienced before. For weeks. Doctor ordered me to sleep sleep sleep, taking Benedryl if needed. I did, and the symptoms went away, but weird, yes? Has this happened to you? I ask because I want to make sure I'm getting all strange pains tested to the full extent if there's a chance it's something other than celiac. I do sometimes still feel that strange side stitch after a CC incident.

      -SKIN PROBLEMS. I have had a smidge of eczema since I was a teen and it - and the dermatitis herpetiformis I've acquired with my dx - are out of control right now. I recognize the connection with stress, but also, has anyone found any great natural remedies for DH to stop the itching? I've tried so many useless ointments and medicated creams, a number of them given to my by a dermo months ago. I see my naturopath this week, but thought I'd ask here too.

      -MOSTLY gluten-free KITCHEN GOOD ENOUGH? My husband is supportive of my diet and mostly eats gluten free meals with me, but we still keep a gluten-y toaster for him and the gluten-y dog food in a corner of the kitchen and he still makes the occasional meal with gluten for himself on his own cookware (ravioli, pizza, mac n cheese, etc). Or sometimes I make eggs/toast and the like for him when he's too sick to move. Otherwise, we're militant about how we cook, which cookware we use, etc. He even has a kitchen nook off our den where he makes sandwiches. But sometimes I wonder if having two separate sponges in our shared-ish main kitchen is enough and I should just banish all gluten whatsoever from the kitchen. I can't be the only one with a mixed kitchen, right? How do you do it if you have a mixed-eating family?

      Thank you so much!  
    • Hang in there!  Count your blessings.  Do something you like to do and relax. I know that is hard to do as a young mother (as I sit here in the kitchen sipping coffee quietly as my teenager is sleeping in after a late football game last night where she marched in 90 degree plus weather in full uniform).   But seriously, take a few minutes to relax!  
    • Meredith, this is very true. A colonoscopy is for diagnosis of the lower intestine, endoscopy for the upper intestine.  How did your doctor interpret the tests? I suggest you read the link Cycling Lady gave you because it contains a lot of good information. 
    • Sorry, but this product (supplement) is not even certified gluten free.   Seems odd that a product geared to Non-Celiac Gluten Intolerance would not take the extra step of getting certified.   I guess I am a Nervous Nellie, especially after the reports that several probiotics were contaminated with gluten.   https://celiac.org/blog/2015/06/probiotics-your-friend-or-foe/
    • Thank you for posting that. I've had a lot of that bloodwork done and everything is normal. At the peak of this belly bug I had blood work done and my white count was fine. I think it's just my health anxiety scaring me into thinking this is something scarier (to me) than celiac. Maybe the anxiety will subside once I go gluten-free. The anxiety is brutal.
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