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

Trying To Make Sense Of These Symptoms, Please Help!


ferb

Recommended Posts

ferb Newbie

I am a 32 year old male. I am 6


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



Celiac.com Sponsor (A8-M):



Harpgirl Explorer

I'm relatively new at this, but honestly, I would try gluten-free for a while to see what happens. The digestive issues and joint pain seem to fit, not sure about the rash though. It doesn't sound like DH because it's seasonal.

If you have gluten sensitivity, you simply have trouble digesting gluten. Celiac is autoimmune. Your body tries to attack the gluten and inadvertantly attacks itself as well make it more life threatening. The symptoms can be very similar so the distinction is fuzzy especially when you concider how common a false negative test is.

I hope that helps a little bit. :)

Harpgirl Explorer

Oh, and if you are going to try the diet, I would go for more than a couple of weeks. I found digestive relief right away, but for others (I think especially with the joint pain) it takes several months.

RollingAlong Explorer

You are not barking up the wrong tree. First, the doc should have run more than one test. There's a whole celiac panel. And get a copy of the results and post them here. You can read about the celiac panel here Open Original Shared Link

The Rheum can probably do this panel for you. Are there any autoimmune diseases in your family, like rheumatoid arthritis or ankylosing spondylitis?

Celiacs have a specific form of intestinal damage and increased intestinal permeability and the tests are all based on diagnosing celiac. Gluten sensitivity has almost all the same miserable symptoms (widely varying from one person to the next) but the intestinal damage is not there and permeability seems ok (based on one recent study.) They are just starting to research non celiac gluten sensitivity and hopefully develop tests specific for it. Dietary response is the big factor for gluten sensitivity, but also important for celiacs since the tests aren't perfect. And the end result for both groups is the same - strictly no gluten!

But don't stop eating gluten until you have all the testing that you want to do completed and you the results in your hand. This could be important for your mom, your kids. You can go ahead and stop eating dairy now and see if that helps. It is fairly common to have a problem with both at first, but many people can add it back later.

You might want to read up on the Paleo diet and which is based on whole foods and can be gluten and dairy free. Basic info here: Open Original Shared Link

good luck - keep us posted

eatmeat4good Enthusiast

You could definitely have Celiac. I had rashes that came and went. Stayed for months then healed for no reason. Until DH happened on my face and stayed. Mine is sensitive to the sun. In the archives here on DH some people have described sun sensitivity with their DH. You are not barking up the wrong tree. You could have Celiac. Try to get a full panel, but if you can't, you could ask for the skin to be biopsied for IgA antibodies. The biopsy has to be taken outside the rash on clear skin. It can also be negative even if it is Celiac. I was diagnosed with a lot of things by dermatologists. If they don't know, they just give you a name for it and prescribe a cream. So given that you have other symptoms of Celiac as well, you should try to go gluten free as soon as possible to see if you get any improvement in your symptoms. It can take some time, but if this is what it is, you may be the only one who can find out. Dr.'s aren't that good at diagnosing it. But the gluten free diet is perfect at diagnosing it. If everything goes away for you, then you need to be gluten free. I think you have enough symptoms going on that I would go gluten free for at least 6 months and do so immediately if a Dr. determined diagnosis is not that important to you. you could also ask to have your vitamin levels checked. Vitamins A, E, K, D, B, B12, folic acid, iron, calcium, magnesium and zinc are commonly deficient in Celiacs. That would give you more info on whether this could be the problem.

Good luck, and I think you found the right tree.

ferb Newbie

Thanks for the feedback guys. After researching online, I do believe the dermatologist that the rash on my face is seborrheic dermatitis. Is SD associated with celiac or gluten sensitivity at all... Or is that just DH? The rash that I got on my abdomen after being in the sun looked completely different. The dermatologist didn't see that one, but I'm wondering if it could be PMLE. Just very strange that I never got these rashes until about 4 years ago. that and the hip pain are what concern me the most. At first I thought it was a pulled muscle or something, but the pain has been persistent for 4+ months now. I was found to be slightly vitamin D deficient, but haven't experienced weight loss, anemia, or anything like that.

I have no idea exactly what kind of celiac blood test they did. I will try to get the results and post them. Also hoping I can get in with the rheumatologist this week who can give me more info... I'm afraid that he won't really have any good answers either and I'll just have to attempt the diet and see what happens.

Anyone know much about candida or systemic yeast? Could that possibly be my problem? I mentioned that to the doc and he just kind of laughed it off saying it is very rare and no good way to test for it. I did the 'candida spit test' which of course was positive, but after a little more research into that it looks to be completely unreliable.

So far, the doctors have failed me so I'm turning to you. Please cure me Internet.

beachbirdie Contributor

Eating a gluten-free diet for a month or so is such a low-cost way to test your body, I would give that a go. Doctors can mess around guessing for a very long time, and you can get sicker and sicker while they go through their elimination routine. Basically what they do is start with the condition that is most common, and guess that you have it. They won't necessarily start out by testing for the "rare" conditions.

You can by-pass a lot of medical expense by simply trying the diet. My son did that, and hasn't looked back. He didn't have any tests, just realized he had a terrible problem with blistery rashes that came and went, as well as frequent migraines. He has some nutritional deficiencies and has a hard time putting on weight. Gluten-free eating solved his worst symptoms, and he's been doing it for almost a year now.

I just found out that I have one of the celiac genes. Knowing that makes it much more likely that my son really IS celiac or super-sensitive to gluten.

The diet didn't cost anything extra, it's truly worth it if it helps you feel well! :)

Good luck.

beachbirdie


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



Celiac.com Sponsor (A8-M):



Hawthorn Rookie
Is SD associated with celiac or gluten sensitivity at all... Or is that just DH?

My skin cleared up gluten-free. Been back on the gluten since june 1st....I now have cradle cap type stuff, but in patches. Itches like crazy all over my scalp. Of course the dandruff too that goes with that. I had no such problems a month ago. I had this problem but on a lesser scale previous to going gluten-free.

My nose is flaky and itchy, but oily at the same time, and I keep getting these crusty things behind my ears that itch like crazy too.

A nice patch of eczema on my elbow that was healing really nicely after years of being there is now sore, bleeding, itching and shedding skin.

All of the above I firmly place the blame on the gluten.....whether or not the doctors would agree is another matter, but since I saw the doctors previously about these skin conditions and not one of them mentioned it could be food related, I'm tempted to say stuff what the doctors think. I feel sometimes if they see a skin problem they just give a steroid cream to get rid of it, and don't really think about what causes it in the first place.

For me the proof is in the pudding (gluten free pudding of course :P )

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,023
    • Most Online (within 30 mins)
      7,748

    Tubbybooboo
    Newest Member
    Tubbybooboo
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      Your experience is both shocking and critically important for the community to hear, underscoring the terrifying reality that cross-contamination can extend into the most unexpected and invasive medical devices. It is absolutely devastating that you had to endure six months of sickness and ultimately sustain permanent vision loss because a doctor dismissed your legitimate, life-altering condition. Your relentless research and advocacy, from discovering the gluten in MMA acrylic to finding a compassionate prosthodontist, is a testament to your strength in a system that often fails celiac patients. While the scientific and medical consensus is that gluten cannot be absorbed through the skin or eyes (as the molecules are too large to pass through these barriers), your story highlights a terrifying gray area: what about a substance *permanently implanted inside the body*, where it could potentially shed microparticles or cause a localized immune reaction? Your powerful warning about acrylic lenses and the drastic difference with the silicone alternative is invaluable information. Thank you for sharing your harrowing journey and the specific, severe neurological symptoms you endure; it is a stark reminder that celiac is a systemic disease, and your advocacy is undoubtedly saving others from similar trauma.
    • Scott Adams
      Those are driving distance from me--I will try to check them out, thanks for sharing!
    • Scott Adams
      I am so sorry you're going through this bad experience--it's difficult when your own lived reality of cause and effect is dismissed by the very professionals meant to help you. You are absolutely right—your violent physical reactions are not "what you think," but undeniable data points, and it's a form of medical gaslighting to be told otherwise, especially when you have a positive HLA-DQ2 gene and a clear clinical picture. Since your current "celiac specialist" is not addressing the core issue or your related conditions like SIBO and chronic fatigue, it may be time for a strategic pivot. Instead of trying to "reprove" your celiac disease to unwilling ears, consider seeking out a new gastroenterologist or functional medicine doctor, and frame the conversation around managing the complications of a confirmed gluten-free diet for celiac disease. Go in and say, "I have celiac disease, am strictly gluten-free, but I am still suffering from these specific complications: SIBO, chronic fatigue, dermatological issues, and high blood pressure linked to pain. I need a partner to help me address these related conditions." This shifts the focus from a debate about your diagnosis to a collaborative plan for your current suffering, which is the help you truly need and deserve to work toward bouncing back.
    • NanCel
      Hello, no I had to have them re done and then used a liner over the top.  Many dentists are not aware of the celiac effects.  Best of luck.   There is other material, yet, very expensive.
    • sleuth
      He is not just a psychiatrist.  He is also a neuroscientist.  And yes, I have already read those studies.   I agree with benfotiamine.  This is short term while glutened/inflammation occurs.  As I had already mentioned, these symptoms no longer exist when this phase passes.  And yes, I know that celiac is a disease of malnutrition.  We are working with a naturopath.
×
×
  • 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.