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

Can't Stay Well

cwj-tlj

Recommended Posts

cwj-tlj Rookie
cwj-tlj
Posted

I was diagnosed 3 months ago. At first I felt better than I have in years. Then it seemed I couldn't stay unglutened. I have been sick once a week for 4 weeks. I have had MRI of the head to apease my DH and boss. 3 days ago I ordered a Sonic salad minus the cheese and opened it up only to find a fried onion ring. Normally ,I would have thrown it away however I was starving and just took off the ring and all of the surrounding lettuce. By the next morning I felt very fatigued and went to bed around 5pm and didn't get out of bed literally for 17 hours. The week before I got equally as sick on a work trip because of flouridex gel which only after I called the company they said there was a byproduct of gluten. Seriously this is really tough. Has anyone had this much trouble getting well. My doc says I am very sensitive now but this may get better with time.

Thanks in advance for listening.

Anyone else had problems with flouridex gel ? I guess I should have not eaten the salad. Is anyone else had a similar experiece? Thanks

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

Celiac.com Sponsor (A8-M):


Lisa Mentor
Lisa
Posted
I was diagnosed 3 months ago. At first I felt better than I have in years. Then it seemed I couldn't stay unglutened. I have been sick once a week for 4 weeks. I have had MRI of the head to apease my DH and boss. 3 days ago I ordered a Sonic salad minus the cheese and opened it up only to find a fried onion ring. Normally ,I would have thrown it away however I was starving and just took off the ring and all of the surrounding lettuce. By the next morning I felt very fatigued and went to bed around 5pm and didn't get out of bed literally for 17 hours. The week before I got equally as sick on a work trip because of flouridex gel which only after I called the company they said there was a byproduct of gluten. Seriously this is really tough. Has anyone had this much trouble getting well. My doc says I am very sensitive now but this may get better with time.

Thanks in advance for listening.

Anyone else had problems with flouridex gel ? I guess I should have not eaten the salad. Is anyone else had a similar experiece? Thanks

Sonic had almost nothing that would be suitable for those of us with Celiac.

I noticed that this is you second post, so I wanted to welcome you to the Board.

Gluten can be a nasty monster, because it hides everywhere. If you try to go 100% gluten free to the best of your ability, it should show some remarkable changes. I do have to admit that in the beginning it is almost impossible to go 100%. There are way too many traps. But, you are three months into a suggested diet and it should be easier for you. The benefits for a gluten free diet far out weighs the pain and the fatigue, at least for me. It keeps me on the straight road.

I usually keep some gluten free snack bars in my purse or some nuts when I find myself not able to eat food...it beats throwing up and intestinal issues and three days of fatigue and brain fog.

You have to weigh you choices. B)

Guest j_mommy
Guest j_mommy
Posted

I've been gluten-free since may 15 and have had some up and downs....but am much better than I was before. It is tuff getting teh hang of things and knowing you need to call/email companies to make sure of products!!

I also do what Lisa does and that's keep snacks with me. That way if I can't get home or to the office for lunch...I've got something to hold me over!

Good Luck!

darkangel Rookie
darkangel
Posted

I've just about quit eating out for the time being and when I do, I don't do fast food. Even the stuff I cook at home, I keep simple, with few ingredients and stuff I KNOW is not a problem for me. It's an adjustment, but I think you'd be better off to play it ultra safe while you're in this highly reactive state.

If you do eat out and you order something like that salad and it comes out wrong, send it back. You need to be polite but very clear with your server that your food must be uncontaminated... they can't just pluck off the croutons or onion ring and send it back out to you... that it will make you very ill. No restaurant wants a lawsuit on their hands.

And I agree with the previous poster: always carry some gluten-free snack items in your purse or car so you're never caught with that desperate, hungry feeling that makes you take chances.

cwj-tlj Rookie
cwj-tlj
Posted
  • Author
I've just about quit eating out for the time being and when I do, I don't do fast food. Even the stuff I cook at home, I keep simple, with few ingredients and stuff I KNOW is not a problem for me. It's an adjustment, but I think you'd be better off to play it ultra safe while you're in this highly reactive state.

If you do eat out and you order something like that salad and it comes out wrong, send it back. You need to be polite but very clear with your server that your food must be uncontaminated... they can't just pluck off the croutons or onion ring and send it back out to you... that it will make you very ill. No restaurant wants a lawsuit on their hands.

And I agree with the previous poster: always carry some gluten-free snack items in your purse or car so you're never caught with that desperate, hungry feeling that makes you take chances.

Thanks for all of the suggestions. I guess "discipline" comes to mind and "even a molecule will get ya!" Got to get better at going to the store more often so I'm not at risk. My life is totally unmanageable with gluten. In fact it's close to wrecking my life at this point. I would just love to get a few weeks under my belt so I can remember how great I feel when it's all out of my system. Going to keep it simple for a while. Thanks everyone and am grateful my condition is treatable at this moment.

loraleena Contributor
loraleena
Posted

Darkangel, who is the singer on your picture - cute!

darkangel Rookie
darkangel
Posted
Darkangel, who is the singer on your picture - cute!

That's the fabulous Ms. Jada Pinkett Smith, rock star, actress and wife of Will Smith.

To the OP, it took me many years to get to this point. It's really hard mentally to give up "normal" foods, particularly when family get togethers and all social stuff seems to revolve around food. I've shot myself in the foot many, many times, but now, I just find it easier to keep everything as simple as possible, even though I don't have a celiac disease diagnosis yet. People eventually realize you can't eat the office birthday cakes, etc. and stop bugging you about it. Anyway, in my experience, it takes a long adjustment period. Hang in there.

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

Celiac.com Sponsor (A8-M):


covsooze Enthusiast
covsooze
Posted

Welcome to the board! You will get there, but it is tough at first. Stick around here and ask lots of questions if you're unsure about any foods etc and as the others have said, make sure you take snacks with you.

Susie x

submarinerwife Newbie
submarinerwife
Posted

CW,

I was diagnosed a little over a year ago. The first few months are the worst I promise you it does get easier. After a few months of what you went through, I completely stopped eating out until I had gone a few months of no more symptoms. Then slowly started eating out a bit at a time, (no fast food they just don't care enough, and its too risky even the french fries and shakes have gluten.) I agree with everyone else about always carrying a snack with you, it really minimizes the risk of "cheating". Don't think of it as a diet, it is a complete lifestyle lifesaving change. I nearly died of this and these past few months of feeling good have been heaven! It is so worth it. There are a lot of good snack foods out there, my kids even prefer some of the things I eat over what is out there for them!

Good Luck

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. cristiana
      - cristiana replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      14

      Ibuprofen

      Hi Colleen Are you supplementing B12/having injections? I have learned recently that sometimes when you start addressing a B12 deficiency, it can temporarily make your symptoms worse. But it is important not to stop the treatment. Regarding your problems with anxiety, again that is another symptom of a B12 deficiency. I didn't know...
    2. Jmartes71
      - Jmartes71 posted a topic in Coping with Celiac Disease
      0

      My only proof

      Hello still dancing around my celiac disease and not getting medically backed up considering Ive been glutenfree since 1994.All my ailments are the core issue of my ghost disease aka celiac disease. Im angery because the "celiac specialist " basically lightly dismissed me.Im extremely angery and fighting for a new primary care physician which is hard to do...
    3. Scott Adams
      - Scott Adams replied to wellthatsfun's topic in Coping with Celiac Disease
      1

      still struggling with cravings

      I totally get this. It's absolutely a grieving process, and it's okay to feel gutted about the loss of those simple joys, especially at 18. Your feelings are completely valid—it's not about being ungrateful for your amazing boyfriend, it's about mourning the life you thought you'd have. That "tortured by the smell" feeling is so real. It does get easier, ...
    4. Scott Adams
      - Scott Adams replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Oh my goodness medication causing pain !!!!

      Many of us with celiac find that the fillers in medications can cause a reaction, and sometimes our bodies just process things weirdly. That "rebound muscle pain" and "burning feet" you described sounds awful and is a huge red flag. It's frustrating enough managing the diet without medication causing setbacks. So sorry you're dealing with this, but you're...
    5. Scott Adams
      - Scott Adams replied to Me,Sue's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Knowing what to do when feeling unwell.

      It's so tough when you're doing everything right and still get hit with it. I'm glad you're figuring out a system that works for you—the peppermint tea and rehydration powders are smart moves. It sounds like you've really learned to listen to your body, and that's half the battle. Sticking to simple, safe food at home is the best way to build yourself back u...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,871
    • Most Online (within 30 mins)
      7,748
    GR82BNTX
    Newest Member
    GR82BNTX
    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

    • cristiana
      Ibuprofen

      By cristiana · Posted

      Hi Colleen Are you supplementing B12/having injections? I have learned recently that sometimes when you start addressing a B12 deficiency, it can temporarily make your symptoms worse.  But it is important not to stop the treatment.  Regarding your problems with anxiety, again that is another symptom of a B12 deficiency.   I didn't know what anxiety was until it hit me like a train several months before gastrointestinal issues began, so I can certainly relate.   Two books which helped me hugely were At Last A Life by Paul David (there is a website you can look up) and The Depression Cure: The Six-Step Programme to Beat Depression Without Drugs by Dr Steve Llardi.  Although his book is aimed at people who have depression, following the principals he sets out was so helpful in lessening my anxiety.  Llardi suggests we need to focus on getting enough: - physical exercise - omega-3 fatty acids - natural sunlight exposure - restorative sleep - social connectedness - meaningful, engaging activity   ... and we should feel a lot better. That is not to stay you must stop taking medication for depression or anxiety if you have been prescribed it, but adopting the changes Dr Llardi sets out in the book should really help. Can I just ask two more questions:  1) you say that you are B12 deficient, did they test your iron levels too?  If not, you really ought to be checked for deficiency and, 2) did they check your thyroid function, as an overactive thyroid can be cause rapid heartbeat and a lot of coeliacs have thyroid issues? Cristiana        
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      Hello still dancing around my celiac disease and not getting medically backed up considering Ive been glutenfree since 1994.All my ailments are the core issue of my ghost disease aka celiac disease. Im angery because the "celiac specialist " basically lightly dismissed me.Im extremely angery and fighting for a new primary care physician which is hard to do in Northern Cali.So currently without and looking.Im angery that its lightly taken when its extremely serious to the one who has it.My only evidence is a brochure back in the days when I got news letters when I lived at my parents.It was published in 1998.I was diagnosed before any foods eliminated from my diet. Angery doctors don't take seriously when Im clearly speaking.I did write to the medicine of congress and have case number.
    • Scott Adams
      still struggling with cravings

      By Scott Adams · Posted

      I totally get this. It's absolutely a grieving process, and it's okay to feel gutted about the loss of those simple joys, especially at 18. Your feelings are completely valid—it's not about being ungrateful for your amazing boyfriend, it's about mourning the life you thought you'd have. That "tortured by the smell" feeling is so real. It does get easier, I promise, but it's okay to sit in the sadness and just vent about how much it stings right now. Thanks for sharing that. Celiac.com has published a book on our site by Jean Duane PhD called Gluten-Centric Culture, which covers many of the social aspects of having celiac disease: This chapter in particular covers issues around eating with family and others - Gluten-Centric Culture: Chapter 5 - Grabbing A Bite Together:    
    • Scott Adams
      Oh my goodness medication causing pain !!!!

      By Scott Adams · Posted

      Many of us with celiac find that the fillers in medications can cause a reaction, and sometimes our bodies just process things weirdly. That "rebound muscle pain" and "burning feet" you described sounds awful and is a huge red flag. It's frustrating enough managing the diet without medication causing setbacks. So sorry you're dealing with this, but you're definitely on the right track by connecting the dots. You can search this site for 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
      Knowing what to do when feeling unwell.

      By Scott Adams · Posted

      It's so tough when you're doing everything right and still get hit with it. I'm glad you're figuring out a system that works for you—the peppermint tea and rehydration powders are smart moves. It sounds like you've really learned to listen to your body, and that's half the battle. Sticking to simple, safe food at home is the best way to build yourself back up. It's great you can take the time to rest properly. Thanks for sharing what works; it's a big help to others figuring this out too. This article, and the comments below it, may be helpful:    
×
×
  • 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.