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

New Here - Dealing With Possibility Of Late Dx


Dewey56

Recommended Posts

Dewey56 Newbie

Hello to all,

My dh has been ill for several months. He had a bad virus. This also let to depression, anxiety, and we even found out a low testosterone level. He also suffered a great weight loss.

He took a very natural approach to getting better. I believe that some dietary changes, which included cutting out wheat, improved his stomach problems greatly. Our daughter is gluten-free/cf so we are pretty well versed in this area, but I am having trouble fully convincing dh that he should keep away from wheat products.

Tomorrow I go food shopping and will pick up some more ready made gluten-free products. I have been trying to convince him to keep a food diary so that he can chart how well he feels and what he ate.

I think he has a late onset of this, but I don't see much info on that.

I need to know if Spelt flour is ok. I don't give it to my daughter, but he liked some muffins I got and he needs a good substitute and especiallly to put back the weight.

I'll post again at another time with more questions, but thanks for reading this for now.


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



Celiac.com Sponsor (A8-M):



celiac3270 Collaborator

Spelt is not good.....one of the bad grains...very similar to wheat, or as one site puts it:

What is Spelt? Spelt (triticum spelta), an ancestor of wheat, is the most ancient and pure form ... Of all grains spelt is best suited for the human digestive system ...

LOL......best suited for digestive system........haha.....anyway, it's no good....there's a list of good and bad ingredients on this site (celiac.com)...go to site index on the toolbar on the left, go to safe and forbidden ingredients list, and you can find it......

Alexolua Explorer
I think he has a late onset of this, but I don't see much info on that.

It can appear later on in life (least the symptons). Happened to me, and pretty sure with a lot of others who post here. =)

tarnalberry Community Regular

Yep, I'm almost completely positive that mine was late onset as well. The only symptom I might have had as a kid was getting sick often, but I was also under a lot of stress and had undertreated asthma, so I don't think that's it. :-) (Yes, I know they can be related, but really, no symptoms that correlated that I can remember.)

debmidge Rising Star

Late onset for my husband (he was 27). I have a co worker who was about 65 when he came down with celiac disease.

Don't agonize over weight loss so much as to get him going on getting tested to confirm celiac, etc. The sooner he gets diagnosed the better - this way you know for sure. Other health conditions could make you lose weight and you want to be certain you're on the right course.

We do most of our shopping at a natural food store that has groceries, celiac.com and other websites.

lovegrov Collaborator

He needs to be tested. ALL first degree relatives of somebody with celiac disease should be tested and it sounds like he definitely has the symptoms. Plus he improved when he cut wheat. Late onset is not at all unusual. I was 46. My father was 70. I urge you to get him tested but he must continue eating wheat beforehand.

Spelt is definitely not OK.

richard

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. - Aretaeus Cappadocia replied to Anne G's topic in Related Issues & Disorders
      2

      celiac disease and braces

    2. - Aretaeus Cappadocia replied to Ginger38's topic in Related Issues & Disorders
      26

      Shingles - Could It Be Related to Gluten/ Celiac

    3. - Lotte18 replied to Lotte18's topic in Publications & Publicity
      2

      Prospective CRISPR research

    4. - Aretaeus Cappadocia replied to Lotte18's topic in Publications & Publicity
      2

      Prospective CRISPR research

    5. - trents replied to Healthierbody2026's topic in Related Issues & Disorders
      15

      New at gluten sensitivity

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

    • Total Members
      133,704
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Aretaeus Cappadocia
      Your concerns are reasonable about the celiac risk aspect, and getting additional medical input is a good idea. Obviously I don't know the extent of your child's misalignment, but please don't think of it as just a cosmetic issue. Braces improve bite alignment and typically provide long term health benefits.
    • Aretaeus Cappadocia
      I watched my spouse go through shingles before the vaccine was available for "younger" people, so I got the vaccine as soon as I could. It really knocked me down too, especially the second dose. Even with that, if necessary I would take that vaccine every year to avoid getting shingles. Luckily it's a lifetime benefit though.
    • Lotte18
      Hi Aretaeus, Thanks for posting these articles.  The second of the two relates to my query.  Last week there was a podcast by the Washington Post with the director of the NIH and CDC.  Both institutions are now headed by one guy, Dr. Bhattacharya.  He claims that research funding for rare diseases has NOT been cut.  The question still remains, how do we get Celiac on their radar when of course we are competing for dollars with all kinds of other diseases?  Are people in our community interested in a CRISPR cure?   It seems to me CRISPR works at odds with big pharma because it actually IS a cure.  You wouldn't have to take a drug to suppress T cell inflammation for the rest of your life.  CRISPR is supposed to permanently rewrite your DNA.  I assume we would really need the NIH to fund that research, not rely drug companies.  Dr. Dounda, the brilliant microbiologist, who won the Nobel for her research, making CRISPR possible, thinks that the hefty price will diminish as treatment migrates from bone marrow transplant to infusion therapy.   Because Stanford University started studying celiac and CD8 cells a few years ago, I was curious to see if any progress had been reported.  What I found was a proposal to create a CRISPR platform for celiac by Theresa Flores.  I haven't found anything that states whether or not she got funding.  If anyone at Celiac.com has seen something, please let me know before I start composing a letter to Dr. Bhattacharya.  Not that one little voice in the wilderness is going to move the needle.  If others would also like to write to him, or help compose a joint letter, that would be great.  
    • Aretaeus Cappadocia
      I saw your post and it made me curious so I did a little online research. While I could not find "Theresa Flores" or any human celiac CRISPR studies, I found 2 articles that are perhaps relevant to your questions: 1. "T cell receptor precision editing of regulatory T cells for celiac disease" Mar 2025  (https://www.science.org/doi/10.1126/scitranslmed.adr8941). "Cell Therapy for Celiac Disease. The cover image shows CD4+ T cells (green) engineered to express a gluten-specific T cell receptor (TCR) in the duodenal mucosa and Peyer’s Patch of a mouse that received an oral administration of gluten. B cells are shown in red, dendritic cells in white, and nuclei in blue. Currently, the only approach to manage celiac disease is a strict and costly gluten-free diet, highlighting the unmet need for therapeutics. Porret et al. opted for a cell therapy approach by engineering regulatory T cells (Tregs) to express a gluten-specific TCR. They found that these engineered Tregs could suppress conventional gluten-reactive CD4+ T cells in vitro and in vivo after exposure to gluten. These data suggest that engineered Tregs already in the clinic for other disease indications may offer a cell therapy for celiac disease." In other words, in a mouse model of celiac, researchers were able to demonstrate creation of genetically modified cells that block a key step in the celiac pathway. This shows some promise for making it into human trials. 2. "CRISPR Clinical Trials: A 2025 Update" Jul 2025 (https://innovativegenomics.org/news/crispr-clinical-trials-2025/) This review did not mention any human CRISPR studies related to celiac disease. 
    • trents
      @Healthierbody2026, so you say here that you were diagnosed a few years back but in your first post you say you were recently diagnosed. I am totally confused!
×
×
  • 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.