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

Bunch Of Questions

lorka150

By lorka150
in Coping with Celiac Disease

Recommended Posts

lorka150 Collaborator
lorka150
Posted

Hi everyone,

Just a bunch of questions for everyone.

1. During this weather change, does it really affect anyone? I'm finding I'm feeling flu-like most evenings.

2. What were your first symptoms to ease off, and which ones took a little longer to go gluten free?

3. Is anyone ever just scared to eat because you just are sick of getting sick?

4. Does anyone take pepto-bismol for nausea? I've been feeling nauseated lately.

5. What can help me sleep? I wake up fine, crash around 4pm-10pm, then am up til like 3. Valerian sometimes works. Does anyone else get this?

6. What vitamins/supplements do you take?

Thanks everyone.

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

Celiac.com Sponsor (A8-M):


kevsmom Contributor
kevsmom
Posted
Hi everyone,

Just a bunch of questions for everyone.

1. During this weather change, does it really affect anyone? I'm finding I'm feeling flu-like most evenings.

2. What were your first symptoms to ease off, and which ones took a little longer to go gluten free?

3. Is anyone ever just scared to eat because you just are sick of getting sick?

4. Does anyone take pepto-bismol for nausea? I've been feeling nauseated lately.

5. What can help me sleep? I wake up fine, crash around 4pm-10pm, then am up til like 3. Valerian sometimes works. Does anyone else get this?

6. What vitamins/supplements do you take?

Thanks everyone.

<{POST_SNAPBACK}>

kevsmom Contributor
kevsmom
Posted

Hi Lorka 150 -

When I was first diagnosed, it was all I could do to come home from work and fall into bed. I was sleeping all evening and waking up and watching tv for a few hours, just in time to fall asleep for another hour or so before I had to get up. Well I guess I was getting my 8 hours of sleep, just not when I wanted them.

My body was retaining no nutrients, so I just couldn't function. I even ended up in the hospital because I wasn't retaining Vitamin K (for clotting) and developed a nose bleed that wouldn't stop and bruises all over my body. I had to get 6 units of blood and 1 unit of plasma. Once I went gluten free and got my blood levels back on track I have a lot more energy than I have had in a long time.

The first symptom that went away for me was the diarrhea. I had it for 3 months before being diagnosed and had lost 30 pounds. I didn't mind losing the weight, but that wasn' the way to do it.

I do take vitamins. Right now I am taking the Spring Valley Allergy Free Naurally Complete Multivitamin and the Iron. In the past I have taken CVS brand.

Be careful and read the ingredients. Before I went gluten-free I was taking Walmart brand - big mistake. THEY ARE NOT GLUTEN FREE (It does list gluten in the ingredients, although it is the last ingredient and I almost missed it). :huh:

Good luck -

Cindy (aka kevs mom - I really do have my own identity)

nettiebeads Apprentice
nettiebeads
Posted
I do take vitamins.  Right now I am taking the Spring Valley Allergy Free Naurally Complete Multivitamin and the Iron.  In the past I have taken CVS brand. 

Be careful and read the ingredients.  Before I went gluten-free I was taking Walmart brand - big mistake.  THEY ARE NOT GLUTEN FREE (It does list gluten in the ingredients, although it is the last ingredient and I almost missed it).  :huh: 

Good luck -

Cindy (aka kevs mom - I really do have my own identity)

<{POST_SNAPBACK}>

My daughter just inherited my Walmart supplements. I'd used them before, but ignored my own advice and didn't read the labels when I restocked last month. But thanks to this forum, I was about to answer another post on what I took and so I finally read the label. Gluten was the very last word :angry::angry: No wonder it was all I could do to make it through the week at work - I was poisoning myself!!! I always forget to take my supplements during the weekend - different routine.

Cindy Chabot Newbie
Cindy Chabot
Posted

Hi

My son and I have been gluten-free since August and we're both not feeling that great. He just spent the last three days in bed. The intestinal problems are much better but the fatigue is overwhelming sometimes. I have been taking a multivitamin and fiber capsules for the past couple of weeks.

I have read so many other posts and I realize that we should start feeling better in a little while. Until then we just have to grin and bear it.

tarnalberry Community Regular
tarnalberry
Posted
3. Is anyone ever just scared to eat because you just are sick of getting sick?

<{POST_SNAPBACK}>

Only food that I can't be sure is gluten-free. What can I be POSITIVE is gluten-free? Whole, fresh fruits and vegetables. Whole, unprocessed beans and nuts (that would mean raw on the nuts). Whole, fresh, unprocessed meat (that really really really means unprocessed).

Claire Collaborator
Claire
Posted
Hi

My son and I have been gluten-free since August and we're both not feeling that great.  He just spent the last three days in bed.  The intestinal problems are much better but the fatigue is overwhelming sometimes.  I have been taking a multivitamin and fiber capsules for the past couple of weeks.

I have read so many other posts and I realize that we should start feeling better in a little while.  Until then we just have to grin and bear it.

<{POST_SNAPBACK}>

For the fatigue try CoQ10. This is an enzyme. I can only speak for myself - it has been a life safer. Claire

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

Celiac.com Sponsor (A8-M):


jenvan Collaborator
jenvan
Posted

on symptoms... my constipation was the first to improve, after several months of gluten-free. brain fog, fatigue and fibromyalgia type pain are still present at 8 mos gluten-free. i have had more energy the past 2 weeks...so hopefully i'm turning a corner!

debbiewil Rookie
debbiewil
Posted

The diarrhea cleared up first. Then the brain fog, unless I accidently got glutened. I still have sleep problems, although I've seen a bit of improvement in the last few days. I'm starting to have occasional days when I have energy! Not much, but any improvement is welcome. I only started gluten-free end of August, so I'm about in the same time frame as you.

Oh, I take basic one-a-day. Per their website, they don't add gluten but won't guarantee it's gluten free.

Q. How much gluten does this contain?

A. We do not add any gluten to our products. However, we cannot guarantee that all raw materials are 100% gluten-free.

It was what I had, and I figured that would work for now. When this bottle is done, I might look for one of the others that will guarantee being gluten free. But the one-a day is available anyplace, and comes in several different formulas, which makes it very convenient. I haven't added anything else, yet, but am thinking about it.

Debbie

darlindeb25 Collaborator
darlindeb25
Posted

1. During this weather change, does it really affect anyone? I'm finding I'm feeling flu-like most evenings. How long have you been gluten-free--maybe you are getting gluten in someway or maybe it is an intolerance to something else that you havent found yet. I cant tolerate much corn or soy and it is a different reaction then gluten for me.

2. What were your first symptoms to ease off, and which ones took a little longer to go gluten free? My first symptoms to go were the diarrhea--the chemical embalances too longer--my panic eased in time--the overall achiness did get better in time, I will always have to deal with my neuropathy symptoms.

3. Is anyone ever just scared to eat because you just are sick of getting sick? I used to be this way. In the beginning, I ate only cottage cheese and fruits, along with caramel corn rice cakes and peanut butter. I never put anything in my mouth that I have the slightest doubt about. The one thing I do that sometimes can be tricky is kissing :P and I am not giving that up ;) .

4. Does anyone take pepto-bismol for nausea? I've been feeling nauseated lately. I find that when I take anything for nausea, it makes me feel better for the time being, but I feel worse the next day. The one thing I do use is Walmart's Equate Gas Relief Extra Strength--I dont have any after effects with it. I havent taken pepto-bismol for years.

5. What can help me sleep? I wake up fine, crash around 4pm-10pm, then am up til like 3. Valerian sometimes works. Does anyone else get this? This I cant help with--I never found the answer. Even if I stay up late, I tend to be a clock watcher. I wake several times in the night--but my prob may be my neuropathy.

6. What vitamins/supplements do you take? I take Nature Made Woman +50 with iron, a good B complex, B12 1000mcg sublingual and I try to take calcium, all gluten free---I am on Long Island now and I have found that some CVS vitamins do state gluten free on them. Always read the ingreds though--I found barley in a gluten free product.

Deb

Rusla Enthusiast
Rusla
Posted

1." 3. Is anyone ever just scared to eat because you just are sick of getting sick? I used to be this way. In the beginning, I ate only cottage cheese and fruits, along with caramel corn rice cakes and peanut butter. I never put anything in my mouth that I have the slightest doubt about. The one thing I do that sometimes can be tricky is kissing :P and I am not giving that up ;) ."

I don't know if this is relevant but if I kissed someone who has drank beer, or rye or any liquor like that I would get sick. Actually with beer especially I would be very sick.

I guess I messed this quote up.

jenvan Collaborator
jenvan
Posted

oh, and i just saw this article with tips to help you sleep today... it has some good ideas. Open Original Shared Link

Guest gfinnebraska
Guest gfinnebraska
Posted

Hi everyone,

Just a bunch of questions for everyone.

1. During this weather change, does it really affect anyone? I'm finding I'm feeling flu-like most evenings. I find I get headaches with the changes in the weather ~ mostly due to the pressure changes. 2. What were your first symptoms to ease off, and which ones took a little longer to go gluten free? I guess the icky bm's... I get really tired at first, and have a lot of gas (attractive, huh??!!)... then the real fun starts. So, I guess you can reverse the order for going away first. 3. Is anyone ever just scared to eat because you just are sick of getting sick? Yes, all the time! I debate every time I am asked to go out if I should just drink a diet coke or actually try and eat something. The diet coke usually wins! I HATE getting glutened, so I avoid eating unless I KNOW without a doubt that what I am putting in my mouth is gluten-free. 4. Does anyone take pepto-bismol for nausea? I've been feeling nauseated lately.

No, I usually just grin and bear it and wish I could throw up! 5. What can help me sleep? I wake up fine, crash around 4pm-10pm, then am up til like 3. Valerian sometimes works. Does anyone else get this? If I am having a bad night, I will take 1 Simply Sleep tablet. It is made by Tylenol. That works great for me. Puts me out. :)6. What vitamins/supplements do you take? I take a liquid B-12 and Viactiv Mulitvitamin. I also take a liquid multivitamin as well.

I hope that helped!! Good luck and I hope you feel better soon!!

darlindeb25 Collaborator
darlindeb25
Posted

Sorry Rusla--I didnt mean that I walk around kissing everyone--geez--just that I draw the line at worrying constantly. My man is very careful with me. He knows how easily I can be glutened and he is careful, but, if I was to get glutened by a kiss, I would just deal with it and kiss him again the next time. That comment was for a smile :rolleyes: --Deb

Archived

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

Go to topic listing

  • 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. GlorietaKaro
      - GlorietaKaro replied to GlorietaKaro's topic in Super Sensitive People
      3

      Am I nuts?

      Thanks to both of you for your responses! Sadly, even after several years of very strict gluten avoidance, I remember the symptoms well enough that I am too frightened to risk a gluten challenge— heartbeat and breathing problems are scary— Scott, thank you for the specific information— I will call around in the new year to see if I can find anyone. In t...
    2. trents
      - trents replied to GlorietaKaro's topic in Super Sensitive People
      3

      Am I nuts?

      Welcome to the celiac.com community, @GlorietaKaro! As Scott indicated, without formal testing for celiac disease, which would require you to have been consuming generous amounts of gluten daily for weeks, it would be not be possible to distinguish whether you have celiac disease or NCGS (Non Celiac Gluten Sensitivity). Their symptoms overlap. The difference...
    3. lalan45
      - lalan45 replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      29

      My journey is it gluten or fiber?

      That’s really frustrating, I’m sorry you went through that. High fiber can definitely cause sudden stomach issues, especially if your body isn’t used to it yet, but accidental gluten exposure can feel similar. Keeping a simple food/symptom journal and introducing new foods one at a time can really help you spot patterns. You’re already doing the right things ...
    4. Russ H
      - Russ H posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Anti-endomysial Antibody (EMA) Testing

      I thought this might be of interest regarding anti-EMA testing. Some labs use donated umbilical cord instead of monkey oesophagus. Some labs just provide a +ve/-ve test result but others provide a grade by testing progressively diluted blood sample. https://www.aesku.com/index.php/ifu-download/1367-ema-instruction-manual-en-1/file Fluorescence-labelled...
    5. Scott Adams
      - Scott Adams replied to JoJo0611's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Just diagnosed today

      First, please know that receiving two diagnoses at once, especially one you've never heard of, is undoubtedly overwhelming. You are not alone in this. Your understanding is correct: both celiac disease and Mesenteric Panniculitis (MP) are considered to have autoimmune components. While having both is not extremely common, they can co-occur, as chronic inflammation...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,805
    • Most Online (within 30 mins)
      7,748
    lalan45
    Newest Member
    lalan45
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • GlorietaKaro
      Am I nuts?

      By GlorietaKaro · Posted

      Thanks to both of you for your responses!  Sadly, even after several years of very strict gluten avoidance, I remember the symptoms well enough that I am too frightened to risk a gluten challenge— heartbeat and breathing problems are scary— Scott, thank you for the specific information— I will call around in the new year to see if I can find anyone. In the meantime, I will carry on has I have been— it’s working! Thanks also for the validation— sometimes I just feel crushed by disbelief. Not enough to make me eat gluten though—
    • trents
      Am I nuts?

      By trents · Posted

      Welcome to the celiac.com community, @GlorietaKaro! As Scott indicated, without formal testing for celiac disease, which would require you to have been consuming generous amounts of gluten daily for weeks, it would be not be possible to distinguish whether you have celiac disease or NCGS (Non Celiac Gluten Sensitivity). Their symptoms overlap. The difference being that celiac disease is an autoimmune disorder that damages the lining of the small bowel. We actually no more about celiac disease than we do about NCGS, the mechanism of the latter being more difficult to classify. There are specific antibody tests for celiac disease diagnosis and there is also the endoscopy/biopsy of the small bowel lining. Currently, there are no tests to diagnose NCGS. Celiac disease must first ruled out. Researchers are working on developing testing methods to diagnose celiac disease that do not require a "gluten challenge" which is just out of the question for so many because it poses serious, even life-threatening, health risks. But we aren't there yet.
    • lalan45
      My journey is it gluten or fiber?

      By lalan45 · Posted

      That’s really frustrating, I’m sorry you went through that. High fiber can definitely cause sudden stomach issues, especially if your body isn’t used to it yet, but accidental gluten exposure can feel similar. Keeping a simple food/symptom journal and introducing new foods one at a time can really help you spot patterns. You’re already doing the right things with cleaning and separating baking—also watch shared toasters, cutting boards, and labels like “may contain.”
    • Russ H
      Anti-endomysial Antibody (EMA) Testing

      By Russ H · Posted

      I thought this might be of interest regarding anti-EMA testing. Some labs use donated umbilical cord instead of monkey oesophagus. Some labs just provide a +ve/-ve test result but others provide a grade by testing progressively diluted blood sample. https://www.aesku.com/index.php/ifu-download/1367-ema-instruction-manual-en-1/file Fluorescence-labelled anti-tTG2 autoantibodies bind to endomysium (the thin layer around muscle fibres) forming a characteristic honeycomb pattern under the microscope - this is highly specific to coeliac disease. The binding site is extracellular tTG2 bound to fibronectin and collagen. Human or monkey derived endomysium is necessary because tTG2 from other mammals does not provide the right binding epitope. https://www.mdpi.com/1422-0067/26/3/1012
    • Scott Adams
      Just diagnosed today

      By Scott Adams · Posted

      First, please know that receiving two diagnoses at once, especially one you've never heard of, is undoubtedly overwhelming. You are not alone in this. Your understanding is correct: both celiac disease and Mesenteric Panniculitis (MP) are considered to have autoimmune components. While having both is not extremely common, they can co-occur, as chronic inflammation from one autoimmune condition can sometimes be linked to or trigger other inflammatory responses in the body. MP, which involves inflammation of the fat tissue in the mesentery (the membrane that holds your intestines in place), is often discovered incidentally on scans, exactly as in your case. The fact that your medical team is already planning follow-up with a DEXA scan (to check bone density, common after a celiac diagnosis) and a repeat CT is a very proactive and prudent approach to monitoring your health. Many find that adhering strictly to the gluten-free diet for celiac disease helps manage overall inflammation, which may positively impact MP over time. It's completely normal to feel uncertain right now. Your next steps are to take this one day at a time, focus on the gluten-free diet as your primary treatment for celiac, and use your upcoming appointments to ask all your questions about MP and what the monitoring plan entails. This dual diagnosis is a lot to process, but it is also the starting point for a managed path forward to better health. This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
×
×
  • 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.