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

A Little Input Please


beth01

Recommended Posts

beth01 Enthusiast

I was diagnosed three weeks ago and have been as gluten free as I can right now ( mistakes have been made by the newbie).  I was wondering ( and I know this sounds like a rather stupid impatient question), when will I start to feel better?  I am still waking up every day nauseous, and am still relying pretty heavily on the dicyclomine for the cramping and am still using my heating pad every day for the pain.  I have had two glutenings in the last three weeks, have been keeping a food diary, and am trying to stay away from any processed foods.  I started vitamins right away, cleaned my house from top to bottom ( no gluten here), cut out dairy, just fresh fruits, veggies, and whole meats.  I have eaten Chex, kind of my go to food right now, seems it the only thing that doesn't make me feel like crap. The insomnia is getting worse, the constipation is back with a vengeance, and along with it all is the frustration.  I know it takes time and possibly years for your body to heal from this especially after being sick for over 20 years, but I haven't worked in months and the money is running out and I am not sure how long before I start to feel better so I can go out and get a job without having to call in sick or have to take a nap. lol

After re-reading this I sound like a whiner and am asking questions that you might not be able to answer since everyone is different, but thought maybe a little feedback might be helpful and maybe a little advise as to things I can change.  Thanks for taking the time to read my pity party and thank in advance for any advice given :)

 


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



Celiac.com Sponsor (A8-M):



cyclinglady Grand Master

Hang in there! If you can avoid the glutenings, you should feel relief soon. It took me about six weeks to see improvement. Everyone heals differently though. Some take a bit longer and others less.

Good job on cleaning gluten out of your house. Do not eat out until you are feeling better. Every glutening sets off your system and can take 1 to 3 weeks to recover. Be diligent. Keep snacks with you to avoid eating at restaurants. Simple foods to encourage healing.

You will get better!

GFinDC Veteran

I'd dump the Chex cereal for now.  Some people report reactions to it.  Instead eat eggs, meat or cooked veggies for breakfast.  The simpler your diet is (fewer foods) the better for healing.

 

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.
Get your vitamin/mineral levels tested also.
Don't eat in restaurants
Eat only whole foods not processed foods.
Eat only food you cook yourself, think simple foods, not gourmet meals.
Take probiotics.
Take gluten-free vitamins.
Take digestive enzymes.
Avoid dairy if it causes symptoms.
Avoid sugars and starchy foods. They can cause bloating.
Avoid alcohol.
Watch out for cross contamination.

Telith Newbie

Just a question, before you knew Gluten was the culprit, what made you feel better?  When I get glutened, I buy ginger ale, and let it go flat while I drink an energy drink.  I don't know if it's the caffeine or the increase of my metabolism or just the brain to body connection of "something is wrong, we need to step up our game" placebo effect but it just makes me feel better. Even the smell of Blue Amp just makes me feel better.  It's horrible for me, no doctor will ever recommend it, but dammit I feel better and I feel better enough that I'm able to focus on what I can actually do to make my symptoms go away for real.  Which is important.

 

You may want to look at what you're cooking with, I know it's a pain in the ass to replace everything, but you don't have to do it all at once, just enough to be able to make sure you're not accidentally getting old contamination making this worse.

 

I started physically feeling better after two weeks, but I had no appetite, was afraid of food, and my digestive symptoms have always taken a back seat to migraines, fatigue, brain fog, and depression, which all lasted much longer.

 

I personally would suggest rice porridge (It's pretty much just over cooked rice as soupy or thick as you want it) with whatever you feel like adding.  I use broth when I'm truly feeling horrid and then slowly add veggies, cheese, and protein like fish or chicken as I feel better/ actually feel hungry instead of knowing I need to put fuel into my body.

 

Everyone is different, we all have our own tricks. Unfortunately it takes a while to figure out which tricks work for you.  That's been the hardest part for me.

nvsmom Community Regular

Are you eating Chex with milk?  About 50% of celiacs are lactose intolerant at diagnosis because our villi which make the lactase that digests the milk sugars (lactose),and if our villi is damaged, it just can't make enough lactase to handle milk. Fortunately most celiacs regain the ability to handle milk after about 6 months gluten-free.

 

I would advise dumping milk for a few months and see if that helps.  Hopefully you'll start feeling better soon.  Most people start seeing some improvements in the first month, but we usually advise that a good 6 months gluten-free are needed to get a better picture of how the gluten-free diet is helping you.

 

Best wishes.

Fenrir Community Regular

I'm about 10 days in of being gluten-free. I don't think I've been glitened yet but I have seen some marginal improvements.

 

My bloating, gas, joint pain and headaches are improved. Overall GI function is better. However, no improvement yet in the upper right quadrant pain.

 

I'm guessing it could take a while for everyting to fix itself.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

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

      Ibuprofen

    2. - Jmartes71 posted a topic in Coping with Celiac Disease
      0

      My only proof

    3. - Scott Adams replied to wellthatsfun's topic in Coping with Celiac Disease
      1

      still struggling with cravings

    4. - Scott Adams replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Oh my goodness medication causing pain !!!!

    5. - Scott Adams replied to Me,Sue's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Knowing what to do when feeling unwell.


  • 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
      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
      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
      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
      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
      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.