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

Does Celiac Get Worst?


7-cody

Recommended Posts

7-cody Apprentice

Does Celiac get worse? For example, I'm 19 now but if I waited until I was 30 would my symptoms get much worse?

Logic tells me that the answer is yes, but I'm wondering if anyone would know from experience.

Edit: OMG, brain fog... I meant worse, not worst


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



Celiac.com Sponsor (A8-M):



Guest j_mommy

I'm 24 and was diagnosed in april. My Gma has celiac and her symptoms have stayed the same through the years(ie she just got tested when I found out and doesn't want to do the diet...she figures she dealt with it this long and will continue the way she is...don't blame her).

The risks get higher the longer you go undiagnosed.....ie lymphomas,more damage to the intestines ect!!

Lisa Mentor
Does Celiac get worse? For example, I'm 19 now but if I waited until I was 30 would my symptoms get much worse?

Logic tells me that the answer is yes, but I'm wondering if anyone would know from experience.

Edit: OMG, brain fog... I meant worse, not worst

Yes, and consider yourself one of the lucky ones. I was diagnosed at 50. Which leave those of us diagnosed at a later age to potentially be at risk for much more unfortunate issues such as diabetes, fibromyalgia, MS, intestinal lymphoma, peripheral neuropathy and other paths that gluten can get a hold of and reek havoc.

Celiac is celiac, but it's friends are not welcome house guests. :( Please be true to you diet.

7-cody Apprentice
Yes, and consider yourself one of the lucky ones. I was diagnosed at 50. Which leave those of us diagnosed at a later age to potentially be at risk for much more unfortunate issues such as diabetes, fibromyalgia, MS, intestinal lymphoma, peripheral neuropathy and other paths that gluten can get a hold of and reek havoc.

Celiac is celiac, but it's friends are not welcome house guests. :( Please be true to you diet.

Yeah that's pretty much what I figured... :D

GeoffCJ Enthusiast

I was diagnosed at 31, but have had symptoms since I was in college. Maybe 19 years old or so. Didn't get diagnosed. Symptoms got worse, and I got more of them. around 6-7 years ago, I started having issues with Periphial (sp?) Neuropathy. I get painful tingling and numbness in my hands and feet.

Since going gluten-free, most of my symptoms have gotten better, but I am still having issues with the Neuropathy. It coems and goes, but is frequently still pretty severe. Some times I think it's getting better, sometimes I'm not sure. At this point, I'm hoping it isn't completely permanent.

I'd say it's like driving a car with low oil. The earlier you figure it out, the better, but it probably has more to do with the time between onset and diagnosis, perhaps not as much as the age at which you get it.

It does seem likely to my non-doctor mind that having undiagnosed celiacs during times of large body changes (growth, puberty, pregnancy, etc) might have larger implications than perhaps during times where there is less change (like as an adult).

Geoff

Betty in Texas Newbie

I think the older you are before being dignosed the more damaged you would have and more chances of having intiestional canser. I was 53 and always had it the dr said. I can rember going on road trips with partents when I was small and always said I waould get car sick and throu up well that is because we would stop on the way and eat the hamburgers. So it wasn't car sick it was sick with celiac.

Queen Serenity Newbie

I agree with everyone. The later the diagnosis, the worse off you could be. I was diagnosed at the age of 28. Six years later, I was diagnosed with hypothyroidism. So, the younger, the better. You are really lucky, and I hope that you stay healthy! :)

Vicki

G.F. since Sept. 1995


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



Celiac.com Sponsor (A8-M):



Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

    2. - Scott Adams replied to Aretaeus Cappadocia's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

    3. - Scott Adams replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      nothing has changed

    4. - Scott Adams commented on knitty kitty's blog entry in Thiamine Thiamine Thiamine
      1

      About Celiac Remission

    5. - Scott Adams replied to TheDHhurts's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      need help understanding testing result for Naked Nutrition Creatine please

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,190
    • Most Online (within 30 mins)
      7,748

    Atl222
    Newest Member
    Atl222
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • trents
      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease or gluten/oats exposure. See attachment. But you might try eliminating oats to start with and possibly dairy for a few months and then seek another endoscopy/biopsy to see if there was a reduction in lymphocyte counts. 
    • Scott Adams
      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especially since Eden has a long-standing reputation for transparency. While the lack of gluten labeling can understandably give pause, manufacturer confirmation like this is often what people rely on for traditionally fermented products. As always, trusting your body after trying it is reasonable, but based on the information you gathered, your conclusion makes sense.
    • Scott Adams
      Seven months can still be early in celiac healing, especially if you were mostly asymptomatic to begin with—symptoms like low iron, vitamin D deficiency, nail changes, and hair issues often take much longer to improve because the gut needs time to recover before absorption normalizes. A tTG-IgA of 69 is not “low” in terms of immune activity, and it can take 12–24 months (sometimes longer) for antibodies and the intestinal lining to fully heal, particularly in teens and young adults. Eating gluten again to “test” things isn’t recommended and won’t give you clear answers—it’s far more likely to cause harm than clarity. Weight not changing is also very common in celiac and doesn’t rule anything out. Please know that your frustration and sadness matter; this adjustment is hard, and feeling stuck can really affect mental health. You deserve support, and if you can, reaching out to a GI dietitian or mental health professional familiar with chronic illness could really help you through this phase. This study indicates that a majority of celiacs don't recover until 5 years after diagnosis and starting a gluten-free diet: Mucosal recovery and mortality in adults with celiac disease after treatment with a gluten-free diet However, it's also possible that what the study really shows is the difficulty in maintaining a 100% gluten-free diet. I suspect that if you looked closely at the diets of those who did not recover within 2 years might be that their diets were not 100% gluten-free. Perhaps they ate out more often, or didn't understand all of the hidden ingredients where gluten can hide. Either way, it shows how difficult recovery from celiac disease can be for most people. According to this study: This article explores other causes of flattened villi:    
    • Scott Adams
      Gluten testing is normally reported in ppm (parts per million), which is equivalent to mg/kg, not micrograms by itself. A result of <0.025 mcg only becomes meaningful if you know the sample size tested (for example, mcg per gram or per kg). If that value represents <0.025 mcg per gram, that would equal <25 ppm, which is above the gluten-free threshold; if it’s <0.025 mcg per kilogram, it would be extremely low and well within GF limits. Without the denominator, the result is incomplete. It’s reasonable to follow up with the company and ask them to confirm the result in ppm using a validated method (like ELISA R5)—that’s the standard used to assess gluten safety.
    • Scott Adams
      Medication sensitivity is very real for many people with celiac and other autoimmune conditions, and it’s frustrating when that’s brushed off. Even when a medication is technically gluten-free, fillers, dose changes, or how your nervous system reacts—especially with things like gabapentin—can cause paradoxical effects like feeling wired but exhausted. The fact that it helped bloating suggests it may be affecting gut–nerve signaling, which makes sense in the context of SIBO, but that doesn’t mean the side effects should be ignored. You’re carrying a heavy load right now with ongoing skin, eye, and neurological uncertainty, and living in that kind of limbo is exhausting on its own. It’s understandable to feel overwhelmed and discouraged when systems and providers don’t meet you where you are—your experience is valid, and continuing to advocate for yourself, even when it’s hard, really does matter. You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
×
×
  • 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.