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. - Iam replied to Larzipan's topic in Related Issues & Disorders
      33

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

    2. - trents replied to Scatterbrain's topic in Sports and Fitness
      6

      Feel like I’m starting over

    3. - bobadigilatis replied to Larzipan's topic in Related Issues & Disorders
      33

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

    4. - cristiana replied to Scatterbrain's topic in Sports and Fitness
      6

      Feel like I’m starting over


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,302
    • Most Online (within 30 mins)
      7,748

    Mamacin
    Newest Member
    Mamacin
    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

    • Iam
      Yes.  I have had the tmj condition for 40 years. My only help was strictly following celiac and also eliminating soy.  Numerous dental visits and several professionally made bite plates  did very little to help with symptoms
    • trents
      Cristiana makes a good point and it's something I've pointed out at different times on the forum. Not all of our ailments as those with celiac disease are necessarily tied to it. Sometimes we need to look outside the celiac box and remember we are mortal humans just like those without celiac disease.
    • bobadigilatis
      Also suffer badly with gluten and TMJD, cutting out gluten has been a game changer, seems to be micro amounts, much less than 20ppm.  Anyone else have issues with other food stuffs? Soy (tofu) and/or milk maybe causing TMJD flare-ups, any suggestions or ideas? --- I'm beginning to think it maybe crops that are grown or cured with glyphosphate. Oats, wheat, barley, soy, lentils, peas, chickpeas, rice, and buckwheat, almonds, apples, cherries, apricots, grapes, avocados, spinach, and pistachios.   
    • cristiana
      Hi @Scatterbrain Thank you for your reply.   Some of these things could be weaknesses, also triggered by stress, which perhaps have come about as the result of long-term deficiencies which can take a long time to correct.   Some could be completely unrelated. If it is of help, I'll tell you some of the things that started in the first year or two, following my diagnosis - I pinned everything on coeliac disease, but it turns out I wasn't always right!  Dizziness, lightheaded - I was eventually diagnosed with cervical dizziness (worth googling, could be your issue too, also if you have neck pain?)  A few months after diagnosis I put my neck out slightly carrying my seven-year-old above my head, and never assigned any relevance to it as the pain at the time was severe but so short-lived that I'd forgotten the connection. Jaw pain - stress. Tinnitus - I think stress, but perhaps exacerbated by iron/vitamin deficiencies. Painful ribs and sacroiliac joints - no idea, bloating made the pain worse. It got really bad but then got better. Irregular heart rate - could be a coincidence but my sister (not a coeliac) and I both developed this temporarily after our second Astra Zeneca covid jabs.   Subsequent Pfizer jabs didn't affect us. Brain fog - a big thing for people with certain autoimmune issues but in my case I think possibly worse when my iron or B12 are low, but I have no proof of this. Insomnia - stress, menopause. So basically, it isn't always gluten.  It might be worth having your vitamins and mineral levels checked, and if you have deficiencies speak to your Dr about how better to address them?    
    • knitty kitty
      @NanceK, I do have Hypersensitivity Type Four reaction to Sulfa drugs, a sulfa allergy.  Benfotiamine and other forms of Thiamine do not bother me at all.  There's sulfur in all kinds of Thiamine, yet our bodies must have it as an essential nutrient to make life sustaining enzymes.  The sulfur in thiamine is in a ring which does not trigger sulfa allergy like sulfites in a chain found in pharmaceuticals.  Doctors are not given sufficient education in nutrition (nor chemistry in this case).  I studied Nutrition before earning a degree in Microbiology.  I wanted to know what vitamins were doing inside the body.   Thiamine is safe and nontoxic even in high doses.   Not feeling well after starting Benfotiamine is normal.  It's called the "thiamine paradox" and is equivalent to an engine backfiring if it's not been cranked up for a while.  Mine went away in about three days.  I took a B Complex, magnesium and added molybdenum for a few weeks. It's important to add a B Complex with all eight essential B vitamins. Supplementing just one B vitamin can cause lows in some of the others and result in feeling worse, too.  Celiac Disease causes malabsorption of all the B vitamins, not just thiamine.  You need all eight.  Thiamine forms including Benfotiamine interact with each of the other B vitamins in some way.  It's important to add a magnesium glycinate or chelate supplement as well.  Forms of Thiamine including Benfotiamine need magnesium to make those life sustaining enzymes.  (Don't use magnesium oxide.  It's not absorbed well.  It pulls water into the intestines and is used to relieve constipation.)   Molybdenum is a trace mineral that helps the body utilize forms of Thiamine.   Molybdenum supplements are available over the counter.  It's not unusual to be low in molybdenum if low in thiamine.   I do hope you will add the necessary supplements and try Benfotiamine again. Science-y Explanation of Thiamine Paradox: https://hormonesmatter.com/paradoxical-reactions-with-ttfd-the-glutathione-connection/#google_vignette
×
×
  • 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.