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
Dewey56
Posted

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
celiac3270
Posted

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
Alexolua
Posted
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
tarnalberry
Posted

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
debmidge
Posted

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
lovegrov
Posted

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.

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

  • Member Statistics

    • Total Members
      133,431
    • Most Online (within 30 mins)
      7,748
    Dave162
    Newest Member
    Dave162
    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

    • Thoughtidjoin
      Dried Chickpeas

      By Thoughtidjoin · Posted

      Can I wash gluten off dried chickpeas or green lentils when the packet says “may have been cross contaminated?” Has there been any research into this?  If so what are the results? If no research has been done why not? I am getting mixed advice from different sources, how serious is this or are the food manufacturer being over cautious? Many thanks Catherine
    • catnapt
      Collecting all possibly related lab work?

      By catnapt · Posted

      I've got some lab work results going back to 2010, various MRIs and CT scans and ultrasounds. I discovered two things that MIGHT be of interest to the GI doc tell me what you think? one is the results to an abdominal CT scan with contrast in 2013 that includes this:  "there is some thickening seen in the second and third portions of the duodenum"    Since this CT scan was for left lower quad pain, it was not followed up on   Then in May of 2024 I saw a foot specialist for problems with my feet. Some of that pain is due to a very obvious deformity of both of my legs- the right worse than the left. The dr suggested that my symptoms sounded like an auto immune condition (???) and I thought he was nuts but he ordered some lab work- it came back negative except for a weak positive on one test HLA-B27 and there was a follow up test recommended but that was never ordered and this dr gave me a useless Rx for custom insoles which he refused to address - and my calls to his office were never returned.   At that time I was having all over joint pains, plus some numbness in my feet (also stiffness) and some burning pain in my toes- esp the big toe on the right foot (the more deformed side of my body)   The last time I was eating any appreciable amount of gluten containing foods was in the period of Nov 2024 to around sometime in the summer of 2024. I regularly ate a barley soup that I loved and had subs and pizza and toast etc. I was no longer eating wheat pasta, had already switched to brown rice pasta but otherwise I had not yet made a clear connection between what I was calling 'refined grain products' and any symptoms that I had. And the symptoms were vague and could be attributed to other things.   I was referred to a neurologist in late 2023 for symptoms  of confusion/disorientation, that included loss of balance that I attributed, in part, to the inability to feel where my feet were. Some symptoms such as high spikes in blood pressure (some close to 200 over 100! scary stuff) were later determined to be due to covid or long covid (also had loss of sense of smell and taste)    I had periods of dizziness that did NOT include any spinning sensations, it was more of a feeling of lightheadedness as if my mind would go blank- very strange, never really got any answers about that but that eventually went away so not worried about that   WHAT OTHER THINGS from my past records might be good for the GI dr to know? I had my very first Vit D test done in 2023 and it was low at 23, supplements have gotten that up in the range of adequate but values varied up and down... most recent test was Nov 2025 and it was 45ish I think. That's on a min of 5000Ius per day (there are some fortified foods I eat sometimes that have added vit D)   I thought my serum calcium ran on the low side but it turns out that the reference ranges have changed for the labs that I use- one changed their RR back around er, 2014 I think? so I have no clue how to compare the results before and after those changes   calcium has never been below normal and most of my blood work looks "normal" except during illness or other issues like if I'm in afib- blood work looks insane LOL    I don't know what to make of all this but it sure will be nice to get some answers!         
    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      just a few days off of that drug and my digestive system is finally getting back to normal stopping the gluten challenge was not enough to get back to normal, I was still horribly constipated with what seemed like a paralyzed digestive track- nothing was moving! but now, with a few mag citrate capsules that I had to order online and stopping the chlorthalidone, things are getting back to my usual "working well" digestion   so it's clear that the symptoms I had during the gluten challenge were compounded by the new med that was started the same day (I feel like the Dr really should have known better than to do those two things at the same time, add a new drug and start a new diet protocol... but I'm just the patient, what do I  know, right?)   I am going to do another 24 hr urine in a few weeks to see if lowering the dose of vit D gets my urine calcium down to a more tolerable level. that's the plan.  hope it works.  
    • Wheatwacked
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By Wheatwacked · Posted

      Keep it up.  
    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      oh geez!! i made a whole long detailed post and it didn't save it   I give up grrrrrrrrrrr  
×
×
  • 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.