Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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 Celiac.com!
    eNewsletter
    Donate

The Emotonal Toll

AnemicAwareness

Recommended Posts

AnemicAwareness Rookie
AnemicAwareness
Posted

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?

Link to comment
Share on other sites
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

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.

Link to comment
Share on other sites
AnemicAwareness Rookie
AnemicAwareness
  • Author
Posted

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.

Link to comment
Share on other sites
IrishHeart Veteran
IrishHeart
Posted

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?

Link to comment
Share on other sites
AnemicAwareness Rookie
AnemicAwareness
  • Author
Posted

I have been gluten-free only three days now.

Link to comment
Share on other sites
kareng Grand Master
kareng
Posted

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.

Link to comment
Share on other sites
AnemicAwareness Rookie
AnemicAwareness
  • Author
Posted

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.

Link to comment
Share on other sites
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


kareng Grand Master
kareng
Posted

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.

Link to comment
Share on other sites
AnemicAwareness Rookie
AnemicAwareness
  • Author
Posted

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

Link to comment
Share on other sites
kareng Grand Master
kareng
Posted

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)

Link to comment
Share on other sites

Archived

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

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


  • Member Statistics

    • Total Members
      121,088
    • Most Online (within 30 mins)
      7,748
    Aventine
    Newest Member
    Aventine
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Anmol
      Recently Diagnosed Celiac- Need advice

      By Anmol · Posted

      Thanks this is helpful. Couple of follow -ups- that critical point till it stays silent is age dependent or dependent on continuing to eat gluten. In other words if she is on gluten-free diet can she stay on silent celiac disease forever?    what are the most cost effective yet efficient test to track the inflammation/antibodies and see if gluten-free is working . 
    • trents
      Recently Diagnosed Celiac- Need advice

      By trents · Posted

      Welcome to the community forum, @Anmol! There are a number of blood antibody tests that can be administered when diagnosing celiac disease and it is normal that not all of them will be positive. Three out of four that were run for you were positive. It looks pretty conclusive that you have celiac disease. Many physicians will only run the tTG-IGA test so I applaud your doctor for being so thorough. Note, the Immunoglobulin A is not a test for celiac disease per se but a measure of total IGA antibody levels in your blood. If this number is low it can cause false negatives in the individual IGA-based celiac antibody tests. There are many celiacs who are asymptomatic when consuming gluten, at least until damage to the villous lining of the small bowel progresses to a certain critical point. I was one of them. We call them "silent" celiacs".  Unfortunately, being asymptomatic does not equate to no damage being done to the villous lining of the small bowel. No, the fact that your wife is asymptomatic should not be viewed as a license to not practice strict gluten free eating. She is damaging her health by doing so and the continuing high antibody test scores are proof of that. The antibodies are produced by inflammation in the small bowel lining and over time this inflammation destroys the villous lining. Continuing to disregard this will catch up to her. While it may be true that a little gluten does less harm to the villous lining than a lot, why would you even want to tolerate any harm at all to it? Being a "silent" celiac is both a blessing and a curse. It's a blessing in the sense of being able to endure some cross contamination in social settings without embarrassing repercussions. It's a curse in that it slows down the learning curve of avoiding foods where gluten is not an obvious ingredient, yet still may be doing damage to the villous lining of the small bowel. GliadinX is helpful to many celiacs in avoiding illness from cross contamination when eating out but it is not effective when consuming larger amounts of gluten. It was never intended for that purpose. Eating out is the number one sabotager of gluten free eating. You have no control of how food is prepared and handled in restaurant kitchens.  
    • knitty kitty
      14 year old with Celiac & EOE still suffering...

      By knitty kitty · Posted

      Forgot one... https://www.hormonesmatter.com/eosinophilic-esophagitis-sugar-thiamine-sensitive/
    • trents
      50 YO Male Recently Diagnosed with Celiac Disease

      By trents · Posted

      Welcome to the forum community, @ekelsay! Yes, your tTG-IGA score is strongly positive for celiac disease. There are other antibody tests that can be run when diagnosing celiac disease but the tTG-IGA is the most popular with physicians because it combines good sensitivity with good specificity, and it is a relatively inexpensive test to perform. The onset of celiac disease can happen at any stage of life and the size of the score is not necessarily an indicator of the progress of the disease. It is likely that you you experienced onset well before you became aware of symptoms. It often takes 10 years or more to get a diagnosis of celiac disease after the first appearance of symptoms. In my case, the first indicator was mildly elevated liver enzymes that resulted in a rejection of my blood donation by the Red Cross at age 37. There was no GI discomfort at that point, at least none that I noticed. Over time, other lab values began to get out of norm, including decreased iron levels. My PCP was at a complete loss to explain any of this. I finally scheduled an appointment with a GI doc because the liver enzymes concerned me and he tested me right away for celiac disease. I was positive and within three months of gluten free eating my liver enzymes were back to normal. That took 13 years since the rejection of my blood donation by the Red Cross. And my story is typical. Toward the end of that period I had developed some occasional diarrhea and oily stool but no major GI distress. Many celiacs do not have classic GI symptoms and are "silent" celiacs. There are around 200 symptoms that have been associated with celiac disease and many or most of them do not involve conscious GI distress. Via an autoimmune process, gluten ingestion triggers inflammation in the villous lining of the small bowel which damages it over time and inhibits the ability of this organ to absorb the vitamins and minerals in the food we ingest. So, that explains why those with celiac disease often suffer iron deficiency anemia, osteoporosis and a host of other vitamin and mineral deficiency related medical issues. The villous lining of the small bowel is where essentially all of our nutrition is absorbed. So, yes, anemia is one of the classic symptoms of celiac disease. One very important thing you need to be aware of is that your PCP may refer you to a GI doc for an endoscopy/biopsy of the small bowel lining to confirm the results of the blood antibody testing. So, you must not begin gluten free eating until that is done or at least you know they are going to diagnose you with celiac disease without it. If you start gluten free eating now there will be healing in the villous lining that will begin to take place which may compromise the results of the biopsy.
    • Anmol
      Recently Diagnosed Celiac- Need advice

      By Anmol · Posted

      Hello all- my wife was recently diagnosed with Celiac below are her blood results. We are still absorbing this.  I wanted to seek clarity on few things:  1. Her symptoms aren't extreme. She was asked to go on gluten free diet a couple years ago but she did not completely cut off gluten. Partly because she wasn't seeing extreme symptoms. Only bloating and mild diarrhea after a meal full of gluten.  Does this mean that she is asymptomatic but enormous harm is done with every gram of gluten.? in other words is amount gluten directly correlated with harm on the intestines? or few mg of gluten can be really harmful to the villi  2. Why is she asymptomatic?  3. Is Gliadin X safe to take and effective for Cross -contamination or while going out to eat?  4. Since she is asymptomatic, can we sometimes indulge in a gluten diet? ----------------------------------------------------------------------------------------------- Deamidated Gliadin, IgG - 64 (0-19) units tTG IgA -  >100 (0-3) U/ml tTG IgG - 4   (0-5) Why is this in normal range? Endomysial Antibody - Positive  Immunoglobulin A - 352 (87-352) ------------------------------------------------------------------------------------------------ Thanks for help in advance, really appreciate! 
×
×
  • Create New...