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

The Emotonal Toll


AnemicAwareness

Recommended Posts

AnemicAwareness Rookie

I have been needing the bathroom every morning when I wake up. I had a flare up last week. How long do flare ups last? I am a substitute so I work when I can (which is the only work I can do right now because my stomach interupts my life). And the last week I haven't been able to work at all. How do you manage a normal work life when you need the bathroom all the time? And how long do flare ups last?


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

How long have you been gluten-free? Things can be up and down at first but if we stick to mostly whole foods we heal with less accidental cross contamination. The amount of time that a reaction lasts can vary from person to person. I only get D for one day as long as I am not continueing to CC myself but my other symptoms last a couple of weeks. Have you dropped dairy? That is a big one when we first go gluten free. Many are able to add it back when they heal. Do talk to HR so they know that you have a health issue going on if you haven't already. Some school systems will drop a sub if they aren't available too often. Let them know it is temporary and will improve.

I used to sub and I handled it by making sure I got up at least 3 hours before I went to work since I knew that was how long the D would last if I got a hit. Immodium also helped with bad days. Didn't make me feel better but would at least stop the D so I could go to work. Now I mainly volunteer and do my work over the internet (or am trying to anyway). That way if I have a bad day I still can do the work I might need to do.

AnemicAwareness Rookie

I had been told to stay gluten-free until my endoscopy/colonoscopy which will verify that I do in fact have celiacs. But I had not been having gluten (or had reduced it considerably) when I had that so reontroduced it to my diet (I'd only been gluten-free two weeks then). At that point I was also able to eat pizza and cake with some mild D. My doctors had made this preliminary diagnosis based on some bloodwork (my ferretin was really really low.) In fact, my problems had been chronic C not D. C had awful days, but not everyday.

Well, I reintroduced it and had a horrible reaction to Lindt chocolates. Something I could have three weeks before. The next day I went on a rice diet which made symptoms go down quite a bit, but I still feel really bloated and need the bathroom for about an hour every morning. Yesterday, had to miss Easter service because I was too sick.

I live with my mom - where I moved after ending a relationship after three years - and really want to move out, but I can't if I can't work. Immodium sounds like a good idea.

IrishHeart Veteran

I had been told to stay gluten-free until my endoscopy/colonoscopy which will verify that I do in fact have celiacs. But I had not been having gluten (or had reduced it considerably) when I had that so reontroduced it to my diet (I'd only been gluten-free two weeks then).

Well, I reintroduced it and had a horrible reaction to Lindt chocolates. Something I could have three weeks before.

I am not sure who told you to "stay gluten-free before your endoscopy/colonoscopy" for a verified Celiac diagnosis, but this advice is totally wrong on two counts. You need to be consuming gluten at the time of this test and an endoscopy/colonoscopy will not DX celiac--they need to do a biopsy.

And hate to tell you this, hon, but Lindt chocolates are not all gluten-free. Here is the statement from the website:

"Is there gluten or barley malt in Lindt chocolate?

Gluten can be found in several premium chocolate products that Lindt & Sprungli produces; either as a cereal ingredient or as a barley component. Additionally, there are some specific premium chocolate products that are manufactured without cereal or barley malt; however, and even though Lindt & Sprungli incorporates the most stringent cleaning process of all of our manufacturing lines, trace amounts of these gluten ingredients and components may have the opportunity to come in contact with non gluten products, and therefore we cannot make the statement that any of our premium chocolate products are purely "gluten free." We are sensitive to the fact that there are large groups of consumers who are unable to enjoy our chocolate at this time, and we hope that in the future we will be able to accommodate the needs of all our consumers, and offer options to those with varying dietary requirements."

Perhaps, this could explain your recent round of bowel issues?

AnemicAwareness Rookie

I have been gluten-free only three days now.

kareng Grand Master

I had been told to stay gluten-free until my endoscopy/colonoscopy which will verify that I do in fact have celiacs. But I had not been having gluten (or had reduced it considerably) when I had that so reontroduced it to my diet (I'd only been gluten-free two weeks then). At that point I was also able to eat pizza and cake with some mild D. My doctors had made this preliminary diagnosis based on some bloodwork (my ferretin was really really low.) In fact, my problems had been chronic C not D. C had awful days, but not everyday.

Well, I reintroduced it and had a horrible reaction to Lindt chocolates. Something I could have three weeks before. The next day I went on a rice diet which made symptoms go down quite a bit, but I still feel really bloated and need the bathroom for about an hour every morning. Yesterday, had to miss Easter service because I was too sick.

I live with my mom - where I moved after ending a relationship after three years - and really want to move out, but I can't if I can't work. Immodium sounds like a good idea.

I'm not sure if you are currently gluten-free or not. Remember that being gluten-free will effect the blood or endoscopy results. Your endoscopy will likely appear ok as some of the superficial damage will heal if you are gluten free.

AnemicAwareness Rookie

Sorry. My response may have been confusing.

I was going gluten-free, but they told me NOT to do that. So I started eating gluten again. I didn't react the first time to the Lindt chocolates, but the second time they did. THat would make sense if some do contain gluten. I may have just been lucky the first time because I had no reaction, but the second day was violently ill.

I have been going gluten-free three days now. I don't expect everything to be perfect, but I have this constant feeling like I need to go the bathroom (even when I don;t) and have D evey morning for at least an hour.


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



Celiac.com Sponsor (A8-M):



kareng Grand Master

Sorry. My response may have been confusing.

I was going gluten-free, but they told me NOT to do that. So I started eating gluten again. I didn't react the first time to the Lindt chocolates, but the second time they did. THat would make sense if some do contain gluten. I may have just been lucky the first time because I had no reaction, but the second day was violently ill.

I have been going gluten-free three days now. I don't expect everything to be perfect, but I have this constant feeling like I need to go the bathroom (even when I don;t) and have D evey morning for at least an hour.

Unless your endoscopy is tomorrow, you need to be eating gluten to get an accurate biopsy. If you know gluten bothers you, you can just decide to be gluten free without an official diagnosis. And save a few thousand dollars on the procedure.

AnemicAwareness Rookie

Colonoscopy and endoscopy are tomorrow. Thankfully, my insurance covers it all.

kareng Grand Master

Colonoscopy and endoscopy are tomorrow. Thankfully, my insurance covers it all.

Well! There you go! B)

Good luck, enjoy the massive quantities of gatorade! B)

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.