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

Thanks For The Support


Jenniferxgfx

Recommended Posts

Jenniferxgfx Contributor

I'm new here, but I've been reading for awhile and not really posted myself. Your experiences and insight have been really helpful to me.

I've come to realize that gluten (wheat in general) is bad for me, and it's taken some time to get in to see a GI doc to get a biopsy. I finally saw her on the 15th and she scheduled an endoscopy for July 18. Up till the 15th, I'd been eating "gluten lite" for a month or so and was really feeling an improvement in some of my debilitating symptoms (like fibromyalgia pain and asthma), and coming to see how my stomach hurt only after meals that cottoned wheat. I committed to going on a "gluten bender" for the next month, and tried really hard to get in several wheat servings a day. (another symptom is severe gerd with nausea and I've been eating very little for about 18months. I've lost 30% of my body weight in that time, between my appetite, D, and vomitting. It's been hard to eat enough gluten for testing.)

Anyhow! So I got word of a cancellation and I'm having my endoscopy Monday! I've never looked forward to a test before in my life. In fact, I have PTSD from my medical experiences, so this is a pretty big step. I'm so glad to possibly have answers. I've had years of being told I'm too fat, too lazy, too sensitive, and worry too much and if I'd just lose weight, exercise, and suck it up, my symptoms would go away. I have a permanent back injury, but there's a million other things that improve without gluten in my life. You've shown me I'm not the only one, and I'm not a hypochondriac. Regardless of Monday's results, gluten will be out of my life, and my quality of life will improve. Thank you so much for sharing your experiences and understanding!


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



Celiac.com Sponsor (A8-M):



Jenniferxgfx Contributor

Sorry for those typos. I don't have much energy and am online from my phone while resting. Autocorrect has a mind of it's own!

rosetapper23 Explorer

You go, girl! Please let us know how your tests turn out...

Hawthorn Rookie

I've had years of being told I'm too fat, too lazy, too sensitive, and worry too much and if I'd just lose weight, exercise, and suck it up, my symptoms would go away.

Aren't people just darlings? I've had this too, and thanks to this kind of thing can now add lack of confidence to the list.

The good news is for me at least, off the gluten these symptoms disappeared for me. The weight was starting to come off and I was getting to the point where I wanted to exercise because I felt able to.

Good luck and hope you feel normal again soon :)

mommida Enthusiast

I'm wishing you fast and steady healing! I'm glad you have your mind set on going gluten free after the test no matter what the doc may say. Gluten lite may have healed some of the damage that would have diagnosed you.

The most hurtful comments were from doctors pre-diagnoses. Accusations of anorexia, you're too high strung, perfectionist syndrome, depression, and whatever goof ball comment instead of HELPING me.

These doctors would have said stupid crap if you were the perfect weight, over weight, or under weight. The just weren't trained to find the cause of your symptoms, only to push pills.

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.