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

Can You Have Dh On Your Hands And Gluten Sensitive, But Not Celiac?


southpawami

Recommended Posts

southpawami Newbie

As the usual goes... I've been on and off the gluten free diet... or as close as I know how to get, three times now. Twice in 2006, once in 2007. Anywhere from a month on the diet, to multiple months straight on the diet. And of course, I feel healthier on the diet, my back stops hurting about a month into the diet, my mysterious eczema goes almost fully away, and I seem to think quicker and learn better.

These symptoms

  • bone or joint pain
  • fatigue, weakness and lack of energy
  • depression

I have when I'm consuming a mixed diet with gluten and non-gluten foods. From my dieting experience, the fatigue/lacking energy/seeming like a bunch of laziness goes away the quickest, followed by a long time waiting (4 weeks about plus or minus) till the other two symptoms go away. The closer the last time I was on the diet, the faster the depression disappears, though the pain in the back is quite the stubborn one that likes to hang around for weeks. Also, I have noticed that the longer I'm on the diet, the longer it takes for the symptoms to appear when I go off the diet... sometimes weeks/months... but go figure... those symptoms just get progressively worse over time(and vice versa). And since nobody can see these symptoms as they aren't physically seen, except the oh-so-common eczema... well I just feel like a hypochondriac or crazy. (Reminds me of someone I knew with fibromyalgia... since there was no obvious physical evidence of any real unique sort, it seemed hard to believe she really had it or that it existed for that matter. Incidentally... I got diagnosed as schizo[aka.. see things/unsocial] quite the while back.. a couple years after a mental breakdow recently n... and after months on the diet[5 years later], I seem to think clearer, remember more easily, and learn quicker than I have in years.[aka.. feel better.. don't see things.. got me, how does a diet do that again?])

In early 2006, I guess it was... one of my family members... not my parents, told me they got diagnosed with Celiac disease not long ago. They nearly died by something like starvation before a doctor finally suggested getting tested. That family member was found to have the disease and found also to have had symptoms for at least 30 years prior to the diagnosis. They told me to get checked out... and I was like... naw... that's okay.

A short time later, I looked up the disease, and the symptoms. And for the most part... a good portion of the 'other symptoms' I've had for a while. The common symptoms I've never really had... which is the only thing doctors seem to ask about. I did have a blood test while I was on the diet for about 3 months prior to the test, and the results were negative. Due to those results, one of my family members... not the same one that was diagnosed... told me that I don't have Celiac... which is fine if I don't... but the diet has done the same things 3 times in a row. I've been my own guinea pig here.

More recently... in some question whether that family member was right... and if I was just imagining things being that nobody else can see these things right off the bat, so they just assume you're living life better, making better decisions... I decided to test it and perhaps I was testing God, but I wanted to see if a gluten happy diet would do anything bad. Unfortunately, now... instead of an annoying tiny eczema that seemed to pop up on my right upper wrist randomly throughout the year starting 2004ish, my eczema now covers all four fingers on both hands in a nearly identical lay. And, I even started to see a thing or two once in a while.(It took months to stop seeing things the first time I went on the diet) Also, as usual, my back/bones started hurting again. I figured I'd try to get a biopsy, but after finding out that it was 1000 dollars cash for the pre-pay inexpensive version... I simply can't afford it right now.

Now.. of course... I can say that eczema happens to so many people... it isn't this. However... time in and out of the diet has shown me that the eczema subsides when I'm on the diet, and gets worse when I'm cheating on the diet. So... roughly over a year and a half experimenting with this diet... and I've come to the conclusion that the diet certainly does something. But it takes so long to do it, everyone thinks its something else. Which just makes me wonder about myself(generally I only start wondering about myself a bit after I start cheating on the diet... cheating seems to affect my judgment at some point which is not cool. Actually... scatter brained... unfocused... seem to be eventual guarantees if I continue cheating on the diet. **selfishly ponders... remembers how his mother acted scatter brained and generally unfocused and how she was the only child of 4 that didn't get a life threatening disease... hmm**)

So, after so much experimentation... though I'd like to experiment more, I fear worse eczema... I've come to a conclusion that I shouldn't be consuming gluten. Problem is, since none of the main symptoms are ones that I have, and my dual nearly identical eczema isn't even where it's supposed to be, lol... I'm in a strait of trying to figure out what I have, without the extra money for gold tests and the desire to not get worse which going back on gluten even for a test is going to do.

As you can guess... the eczema got so bad and someone told me fonder memories of a time when I was on the diet... I went back to that most inconvenient diet to live the better times and not bleed from itching and be more focused and remember easier and not hurt at my bones in my back... etc... etc.. etc.. Only a week on... thinking is still a little fuzzy and memory is no steel trap... and still a bit depressed and lonely(which causes me to act needy and call people too much and then detest myself for acting needy, lol)... how annoying.

So anyhow... can I have gluten sensitivity and DH? And if I had gluten sensitivity and DH, that wouldn't show up on the blood test, right? And three months into a gluten free diet before a blood test isn't going to affect it, is it? I mean, doesn't it take longer to change the test results?

And also, can someone confirm my knowledge of how this disease is? From what I understand, you can be born with the gene or 'what not' that causes the Celiac disease but you won't actually get Celiac disease until a trigger of Emotional or Physical stress activates the disease. This trigger as far as I know is required for the disease to become active, and this trigger is known to happen anytime from birth to sixty plus. Is that right?

Finally, I recently read a statistic that Celiac disease takes an average of 11 years to be diagnosed correctly after onset. Is this true?


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



Celiac.com Sponsor (A8-M):



ptkds Community Regular

It sounds to me like you should definetly be on a gluten free diet. If you have DH, then you definetly have Celiac disease, but you don't have to have DH to have Celiac disease or Gluten intolerance (2 different things). Gluten intolerance won't show up on a blood test, and occaisonally Celiac disease won't show up on blood work.

You could always try out enterolab (Open Original Shared Link) and get some gene testing done for Celiac disease and gluten intolerance. It is cheaper that the $1000 copay for a biopsy.

If you still don't want to do that, then my suggestion is to try the gluten-free diet for 6 months to a year, then "challenge" yourself with gluten and see how you feel. Give it a longer try than you have done before.

ptkds

southpawami Newbie
It sounds to me like you should definetly be on a gluten free diet. If you have DH, then you definetly have Celiac disease, but you don't have to have DH to have Celiac disease or Gluten intolerance (2 different things). Gluten intolerance won't show up on a blood test, and occaisonally Celiac disease won't show up on blood work.

You could always try out enterolab (Open Original Shared Link) and get some gene testing done for Celiac disease and gluten intolerance. It is cheaper that the $1000 copay for a biopsy.

If you still don't want to do that, then my suggestion is to try the gluten-free diet for 6 months to a year, then "challenge" yourself with gluten and see how you feel. Give it a longer try than you have done before.

ptkds

Thanks for the website... I'll read up on them. A cheaper way to test is more than welcome.

Yea... I think it's just that 'unresolved'... or 'no medical evidence for others to see' that is what is driving me a little batty.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,546
    • Most Online (within 30 mins)
      7,748

    KimberlyAnne76
    Newest Member
    KimberlyAnne76
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Beverage
      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
    • Jsingh
      Hi,  I care for my seven year old daughter with Celiac. After watching her for months, I have figured out that she has problem with two kinds of fats- animal fat and cooking oils. It basically makes her intestine sore enough that she feels spasms when she is upset. It only happens on days when she has eaten more fat than her usual every day diet. (Her usual diet has chia seeds, flaxseeds, and avocado/ pumpkin seeds for fat and an occasional chicken breast.) I stopped using cooking oils last year, and when I reintroduced eggs and dairy, both of which I had held off for a few months thinking it was an issue of the protein like some Celiac patients habe mentioned to be the case, she has reacted in the same fashion as she does with excess fats. So now I wonder if her reaction to dairy and eggs is not really because of protein but fat.   I don't really have a question, just wondering if anyone finds this familiar and if it gets better with time.  Thank you. 
    • Chanda Richard
      Hello, My name is Chanda and you are not the only one that gose through the same things. I have found that what's easiest for me is finding a few meals each week that last. I have such severe reactions to gluten that it shuts my entire body down. I struggle everyday with i can't eat enough it feels like, when I eat more I lose more weight. Make sure that you look at medication, vitamins and shampoo and conditioner also. They have different things that are less expensive at Walmart. 
    • petitojou
      Thank you so much! I saw some tips around the forum to make a food diary and now that I know that the community also struggles with corn, egg and soy, the puzzle pieces came together! Just yesterday I tried eating eggs and yes, he’s guilty and charged. Those there are my 3 combo nausea troublemakers. I’m going to adjust my diet ☺️ Also thank you for the information about MCAS! I’m from South America and little it’s talked about it in here. It’s honestly such a game changer now for treatment and recovery. I know I’m free from SIBO and Candida since I’ve been tested for it, but I’m still going to make a endoscopy to test for H. Pylori and Eosinophilic esophagitis (EoE). Thank you again!! Have a blessed weekend 🤍
    • knitty kitty
      Yes, I, too, have osteoporosis from years of malabsorption, too.  Thiamine and magnesium are what keep the calcium in place in the bones.  If one is low in magnesium, boron, selenium, zinc, copper, and other trace minerals, ones bone heath can suffer.  We need more than just calcium and Vitamin D for strong bones.  Riboflavin B 2, Folate B 9 and Pyridoxine B 6 also contribute to bone formation and strength.   Have you had your thyroid checked?  The thyroid is important to bone health as well.  The thyroid uses lots of thiamine, so a poorly functioning thyroid will affect bone heath.  
×
×
  • 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.