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
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?

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.

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.

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.

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)

Archived

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

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


  • Member Statistics

    • Total Members
      131,556
    • Most Online (within 30 mins)
      7,748
    Rachel Wilson
    Newest Member
    Rachel Wilson
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Taken Seriously

      By Scott Adams · Posted

      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      Looking for a gluten-free roomie in Denver CO

      By Scott Adams · Posted

      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Allergy medication: cetirizine by the HealthA2Z is it gluten free?

      By Scott Adams · Posted

      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      Protein or fat?

      By Scott Adams · Posted

      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      Diagnosed celiac for 1-2 months ago and everything makes me bloated.

      By Beverage · Posted

      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • 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.