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

Questions About Celiac Disease


Gutcheck

Recommended Posts

Gutcheck Newbie

I am a celiac patient. I've known that I had Dermititus Herpediformus (sp?) for about 20 years. Recently I had the gut-scope done to me and found I have Celiac Sprue. Since being diagnosed with D.H. long ago, I have taken Dapsone every day and kept eating whatever I wanted. Upon learning of this new development, I have decided to try to go 100% gluten free and see if it affects how I feel. But I have some questions that I need answers for:

1. Does the amount of gluten ingested affect the amount of villi damage done? In other words, is one little particle of gluten like a duodenal atomic bomb - flattening villi in all directions - or is it dependant on how much gluten you have eaten in determing the amount of damage done?

2. They told me if I went gluten-free that my villi damage was not permanent and they would begin growing back normally. What is the time period for this rejuvenation?

3. Is Dapsone bad for you?

4. Is "Ezekial" brand bread really Gluten Free? Dr. Phil's wife said it was.

5. What about 1-a-day vitamins for men and Tums?

Thanks in adavance for any information you can give me.

And when will Bard'sTale Beer be available? It's supposed to be the only Gluten-free beer available.


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



Celiac.com Sponsor (A8-M):



lovegrov Collaborator

If you have DH andd celiac you don't need to just "try" going gluten-free, you NEED to go gluten-free. While one crumb of gluten will not flatten all your villi, continued exposure to gluten can slowly make you sicker and sicker. You also remain more likely to develop certain cancers and other autoimmune diseases. It's possible you could go along for years with no problems, or things could slowly pile up until you end up in the hospital, like I did.

Dapsone can have severe side effects in some people, but thsoe side effects are rare and can be montiored with regular visits to the doctor. I took it for more than 20 years but wasn't aware of the connection with celiac.

Ezekiel bread is not gluten-free. Some claim sprouted wheat is OK but I wouldn't take the chance. Spelt is also off-limits. We all keep our fingers crossed for Bard's beer. They're trying to find ways and places to distribute it now.

richard

Forty320 Newbie

Just thought I'd mention, my mum used to sprout wheat regularly, but tests revieled the sprouts were not gluten-free.

Niteyx13 Explorer

Open Original Shared Link

Also has gluten-free beer, but I don't think they ship. They are located in the NY area from what I can see. =)

Deanna

DawnI Rookie

please make sure you stay gluten Free.........it gets easier as you go along and everyone is here For you.

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. - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      8

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    2. - MichaelDG posted a topic in Board/Forum Technical Help
      0

      celiac.com support

    3. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      8

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    4. 0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

    5. - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      8

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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

    • Total Members
      133,327
    • Most Online (within 30 mins)
      7,748

    dnamutant
    Newest Member
    dnamutant
    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

    • Jane02
      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • MichaelDG
      How do I contact someone at celiac.com concerning the cessation of my weekly e-newsletter? I had been receiving it regularly for years. When I tried to sign-up on the website, my email was not accepted. I tried again with a new email address and that was rejected as well. Thank you in advance!
    • knitty kitty
      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
×
×
  • 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.