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 Our Content
    eNewsletter
    Donate

Maybe Not Celiac?

minton

Recommended Posts

minton Contributor
minton
Posted

Okay so yes my symptoms since birth fit celiac disease, but given my genetic history (to date nobody in my family even carries the genes much less has symptoms), and a few other things, I'm wondering if I should try reintroducing gluten?

Here are things bringing me to wonder:

-There are major case studies about ingesting gluten via dust and skin contact. I owned a horse the last 9 years of my life and I hand mixed his grain (gluten), practically rolled in barn hay and dust with him, and honestly, I was healthier before he passed away, forcing me to get out of the horse world.

-My symptoms are back and I'm sick again like hell but my only diet change is my inability to afford my raw milk for the last 3 weeks or so. I am still gluten-free though.

-I was never tested. No biopsy, blood, or genetics. The doctor just took my medical history and said it fit celiac so I should start the diet.

-The genetics of course

-My parents and I cook using the same utensils. They eat gluten, I don't and the cross contamination has never been an issue. Ever.

-my symptoms started coming back after i returned dairy to my diet, but disappearred again when I switched to raw milk. My initial start going gluten-free was also dairy free.

Is it possible I have a dairy allergy and not celiac? Or something else that acts similar to celiac? I plan on asking my doctor at next visit but I would love opinions. Should I try adding gluten back in but stick to only raw milk products? Any suggestions or ideas would be appreciated.

Sidenote: I'm not anti-celiac, but it's been 2 years and I'm still pretty sick...

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

I noticed you have DH is that still active? If it is then you may not be as safe sharing a kitchen with gluten eaters as you think you are. You say you are sure you are not being glutened but if the DH is active you are.

minton Contributor
minton
Posted
  • Author
I noticed you have DH is that still active? If it is then you may not be as safe sharing a kitchen with gluten eaters as you think you are. You say you are sure you are not being glutened but if the DH is active you are.

As I said in the DH thread, it was said it probably was DH. I have not been eating at home too much lately. When I do, it hasn't been cooked. I will thaw out gluten-free brownies on the counter and eat the or something but I haven't been home enough to cook.

ShayFL Enthusiast
ShayFL
Posted

If you still have the DH or it is coming back....get it biopsied. Super easy and not painful. 10 minutes at the Dermo. Genes mutate. You could be the first one if EVERYONE else has been genetically tested in your family and dont have Celiac Genes. PLUS a very small % of people have GOLD STANDARD DX Celiac without either DQ2 or DQ8. So I wouldnt rule it out just yet.

Archived

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

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


  • Member Statistics

    • Total Members
      129,678
    • Most Online (within 30 mins)
      7,748
    Celiac79
    Newest Member
    Celiac79
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.2k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • nanny marley
      Help needed

      By nanny marley · Posted

      Thankyou so much for your reply I decided to skip the senna has I've already had very loose stools last few days I've cut my portions down on the low fiber diet too and drinking lots of liquid has I just thought it would be wise to listen to myself too I've probably already done wat the senna would of done myself naturally by drinking clear apple juice which if not on the diet I would have to avoid anyways has I don't tolerate many fruit juices so I'm sure I've done the right thing I did try to contact the department on my letter but weirdly enough it was ringing but then after a while saying wrong number 🤷 but again I'm positive I've done the right thing I'm going to take today very lightly too with low portions and more liquids so yes thankyou for that advise I am very nervous but I have had time to think and read other peoples experiences and not all are bad there is some good advise and reassuring information from people who do these all the time so I'm trying my best to be positive so I can at least settle my mind knowing im doing this to help my own health has this year has been a rollercoaster for me cutting out gluten and lactose was a good idea but I still get flare ups and other symptoms so it definitely is worth a check like you said it was the calprotein that prompted the doctor to refer me again thankyou for your reply it's means a lot for someone to take the time to listen and respond and give uplifting advise  especially to me just now has I'm a bundle of nerves inside getting closer to tomorrow prep so thankyou for that 🙏
    • Mari
      Cruise and GliadinX

      By Mari · Posted

      Hi StevieP I think it is best to take GliadinX Just before, during or just after you eat a food that may have a small amount of gluten.  Taking 2 capsules of GliadinX in the morning will not protect you all day because it will be long gone when you need it. The upper digestive system is where the digestive enzymes break down gluten. The problem with Celiacs is that normal digestion will only break down gluten to the point where the small fragments will still cause a reaction. GliadinX will break down the fragments so that they are too small to start the autoimmune reaction.  The label on my bottle reads'it works in the stomach' and that is ver concentrated so 1 capsule is the recomm Hope this helps/Have a lovely cruise.ended dose for each meal. 
    • StevieP.
      Cruise and GliadinX

      By StevieP. · Posted

      Thanks so much for that information!! That helps me out alot!!
    • Scott Adams
      Help needed

      By Scott Adams · Posted

      It’s completely understandable to feel confused and anxious—colonoscopy prep can feel overwhelming, especially when you’re already dealing with symptoms like loose stools and elevated inflammation markers (that high calprotectin and CRP definitely warrant further investigation!). Regarding the senna tablets: The warning about avoiding senna with IBD (like Crohn’s or colitis) is typically because it can irritate an already inflamed colon. Since you don’t yet have a confirmed diagnosis—but your brother has colitis—it might be worth calling your gastroenterologist’s office today to clarify if you should skip the senna given your symptoms and family history. Some clinics have an on-call nurse who can advise quickly. For the prep itself: Plenvu is strong, so if your bowels are already loose, the senna might be overkill. Stick to clear liquids tomorrow (broth, apple juice, etc.) and stay near a bathroom! For anxiety, remember the procedure itself is painless (you’ll likely be sedated), and the prep is the hardest part. Bring a phone charger or book to the clinic, and treat yourself afterward to something gentle on your stomach (like mashed potatoes or yogurt). Hang in there—this is a big step toward answers. You’re doing great advocating for yourself!
    • Scott Adams
      Wheat Straw Dishes

      By Scott Adams · Posted

      Great question! Wheat straw dishes are typically made from the stalks of wheat plants (which are naturally gluten-free) combined with a binding resin. While the straw itself shouldn’t contain gluten, the safety depends on how the product is processed. Some manufacturers may use wheat-based binders or process the straw in facilities that handle gluten, creating cross-contact risks. To be safe, I’d recommend reaching out to the company directly to ask: 1) If their wheat straw material is tested to confirm it’s free of gluten proteins, and 2) Whether the production line avoids cross-contamination with gluten-containing ingredients. Many brands now cater to gluten-free consumers and will provide detailed answers. If you’re uncomfortable with the uncertainty, alternatives like bamboo, ceramic, or glass dishes are inherently gluten-free and worry-free. Always better to double-check—your diligence is totally justified!
×
×
  • Create New...