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The Emotonal Toll

AnemicAwareness

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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?

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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.

AnemicAwareness Rookie
AnemicAwareness
Posted
  • Author

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
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?

AnemicAwareness Rookie
AnemicAwareness
Posted
  • Author

I have been gluten-free only three days now.

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.

AnemicAwareness Rookie
AnemicAwareness
Posted
  • Author

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.

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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.

AnemicAwareness Rookie
AnemicAwareness
Posted
  • Author

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

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)

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