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

I'm So Stupid

lorka150

By lorka150
in Coping with Celiac Disease

Recommended Posts

lorka150 Collaborator
lorka150
Posted

Well, I kept getting sicker and sicker and hit a really low weight of 88lbs. (I am 5'7'').

Turns out, I've been consuming gluten this whole time - Bob's Red Mill carob powder is not gluten free. I'm a little irritated at my stupidity.

Could this have been why I am having so much trouble getting better? Because of one thing?!!!

I looked back at my food journals and 90% of my really bad days I had eaten that the same day or the day before.

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

Celiac.com Sponsor (A8-M):


burdee Enthusiast
burdee
Posted

I was soooo sorry to read that you unintentionally continued to consume gluten in the Bob's Red Mill Carob Powder and kept getting symptoms and losing weight. But please don't be too hard on yourself. Your physical symptoms are enough punishment. Many of us have accidentally ingested gluten whether by cross contamination or not reading labels carefully or trusting restaurants or family 'cooks'. 8 months after I went gluten free (6 months after my diagnosis) I discovered that I had been consuming a 'gluten' pill 3 times a day when I took digestive enzymes with malt diastase (BARLEY :blink: )!! A year before I suspected celiac, a naturopath recommended those to help with my 'malabsorption' symptoms. He even suggested celiac, but I said I didn't have diarrhea. He wasn't knowledgable enough to tell me celiacs get constipation too. <_< Anyway I continued ingesting that barley for 8 months causing continuing symptoms. Even after eliminating that, I still had some gluten, dairy and soy (all my intolerances) slips regularly enough to feel crappy until I figured this all out. Now at 20 months after I first TRIED to go gluten-free (and then DF/SF) I'm FINALLY learning what 'normal' feels like. Keep gluten sleuthing ... You'll get healthy soon. ;)

BURDEE

jerseyangel Proficient
jerseyangel
Posted

Sorry that you have felt unwell for so long. It is so frusterating when we are trying so hard and being so careful and still something gets past us. You are so not alone. We all go through that. It really just takes some time to figure out what is safe. Yes--that one thing could be the thing that has made you sick this whole time, providing there was no other gluten getting in. A tiny amount can cause a reaction--it really dosen't matter what the actual food was. Hopefully now you'll be feeling much better :)

Archived

This topic is now archived and is closed to further replies.

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

  • Member Statistics

    • Total Members
      133,351
    • Most Online (within 30 mins)
      7,748
    Bea71
    Newest Member
    Bea71
    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

    • par18
      Is it gluten?

      By par18 · Posted

      Thanks for the reply. 
    • Scott Adams
      nothing has changed

      By Scott Adams · Posted

      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
    • Scott Adams
      Is it gluten?

      By Scott Adams · Posted

      Yes, I meant if you had celiac disease but went gluten-free before screening, your results would end up false-negative. As @trents mentioned, this can also happen when a total IGA test isn't done.
    • Seaperky
      Trip to Anaheim/Disney

      By Seaperky · Posted

      I found at Disney springs and Disney they have specialist that when told about dietary restrictions they come and talk to you ,explain cross contamination measures tsken and work with you on choices. Its the one place I dont worry once I've explained I have celiac disease.  Thier gluten free options are awesome.
    • Churley
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Churley · Posted

      Have you tried Pure Encapsulations supplements? This is a brand my doctor recommends for me. I have no issues with this brand.
×
×
  • 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.