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

Just Started gluten-free Diet - Help! Feeling Horrible!

katetastic619

Recommended Posts

katetastic619 Newbie
katetastic619
Posted

I'll make this short and sweet. My name is Kate, 26 yr old PT student. Diagnosed with Celiac Disease. Just started going gluten-free several days ago and am feeling worse then ever. Bad gas and bloat, pains and nausea, reflux, headache, insomnia, fatigue, etc...almost like an intensification of my usual daily symptoms...

Can any of you share your experiences when you first started going gluten-free? Is it normal to feel a lot worse before you get better? Is there some sort of withdrawal people tend to go through? I guess I just want to know what others have gone through and what is typical when first starting the diet.

Thanks guys!

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

Celiac.com Sponsor (A8-M):


Ursa Major Collaborator
Ursa Major
Posted

Hi Kate, and welcome to our boards. Yes, many people will have horrible withdrawal symptoms when first going gluten-free. Those may take up to two weeks before you'll start feeling better.

Also, in order to get better, you are well advised to eliminate dairy and soy as well, as those can hinder healing and keep you feeling sick.

ravenwoodglass Mentor
ravenwoodglass
Posted
I'll make this short and sweet. My name is Kate, 26 yr old PT student. Diagnosed with Celiac Disease. Just started going gluten-free several days ago and am feeling worse then ever. Bad gas and bloat, pains and nausea, reflux, headache, insomnia, fatigue, etc...almost like an intensification of my usual daily symptoms...

Can any of you share your experiences when you first started going gluten-free? Is it normal to feel a lot worse before you get better? Is there some sort of withdrawal people tend to go through? I guess I just want to know what others have gone through and what is typical when first starting the diet.

Thanks guys!

Many of us go through a withdrawl that can last up to a month. Hang in there and as advised cutting soy and dairy will help also. You can add them back in carefully when your symptoms resolve. Make sure you check all your meds, script and OTC, the labeling laws do not apply to drugs of any kind. Go with naturally gluten free food at first and stay out of restaurants and away form alcohol until you have healed.

hathor Contributor
hathor
Posted

Yes, withdrawal is a definite possibility:

Open Original Shared Link

katetastic619 Newbie
katetastic619
Posted
  • Author

Thanks for the info and support!

I am so exhausted right now. I'm sleeping roughly 11 hours a night and I'm still tired. As in, I could conceivable sleep a few more hours.

Ugh!

Sophy Newbie
Sophy
Posted

I am totally in the same boat!!

I have terrible gas - insane! I've never had this in my life. And my intestines hurt, I'm nauseous, dizzy and exhausted.

Maybe not the best thing to say, but it is good to read that someone is going through a similar thing and that this site exists so one does not feel so alone in the withdrawal - ha.

Good luck and keep it up.

Let me know how it goes.

mftnchn Explorer
mftnchn
Posted

I was not too symptomatic when I discovered the problem via Enterolab. I got worse after going Gluten-free Casein-free, and it lasted quite awhile because it seemed to trigger my lyme disease which had been quiescent.

After more than 6 months, I am still having up and downs.

Here's my sense of what happened to me: the celiac had caused several intestinal motility issues...basically just shut down or worked very slowly. When I was young I had hard constipation, but for many years it wasn't hard, just many days between stools with little discomfort usually. Like a sleeping intestine.

After going Gluten-free Casein-free it was like my system suddenly started to wake up and let me know how badly things had been! After three months and some elimination dieting I took soy out of my diet as well.

There are definite signs I am on the right track and when I feel good I feel much better than for many years. So I am hopeful that with patience I will eventually stabilize.

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

Celiac.com Sponsor (A8-M):


  • 3 weeks later...
Rpm999 Contributor
Rpm999
Posted

would it be wise to just wein (sp?) off gluten then? it sounds just like drugs/medicine, unless you wein off you'll go through hell....i mean, why WOULDN'T you just have less and less gluten? it'd be easier to get into the routine i'd assume...or hope :lol:

hathor Contributor
hathor
Posted

I think that would just drag out your symptoms. You would be getting a fix, but not enough of one.

I haven't ever heard of anyone doing the slow method for eliminating gluten, so I can't say for sure. When I stop smoking and cut out coffee (NOT at the same time :lol: ) I cut back for a period until giving both up. I felt not quite right when I was cutting back and still felt horrible when I finally went completely off each substance.

Harobed Newbie
Harobed
Posted

I haven't ever heard of anyone doing the slow method for eliminating gluten, so I can't say for sure.

I tried it, It does not work! I cut out bread and pasta but didn't check ingredients. Anytime I would eat something with wheat, I did okay for a day, but if I ate it 2 days in a row I got really sick.

I tried again, just adding more vegetables and it still did not work.

The reason I did it this way was because I am addicted to breads! I found it too difficult to just stop cold turkey.

Finally after getting sick over and over again, I stopped and went cold turkey.

It is so much better that way!

sometimes taking breads and pasta out of your diet forces you to eat more fruit and veggies. Some of these things will give you gas. It takes your body a few weeks to adjust to the new foods.

In the meantime your intestines begin healing after 24 hours..but it takes a while for them to be completely healed...up to two years. (as told by my dietician)

All I can say is hang in there, and add the vegetables slowly to your diet. Start with potato and non gassy foods, then slowly add broccoli, cabbage, onions and other things that can be more of a problem

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.