Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

When Will It Get Better?


jcronan

Recommended Posts

jcronan Rookie

It has been almost 2 weeks since I went gluten free. I was hoping that I would be feeling better by now, but in some ways I feel worse. I have been extremely careful regarding everything I eat and drink. I cleaned my kitchen and office and reorganized everything to avoid cross-contamination. I have not cut dairy out, but am thinking about starting to immediately. I know many people have said it can take a few weeks to feel better, but is it normal that I feel worse?


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



Celiac.com Sponsor (A8-M):



Diane-in-FL Explorer

It has been almost 2 weeks since I went gluten free. I was hoping that I would be feeling better by now, but in some ways I feel worse. I have been extremely careful regarding everything I eat and drink. I cleaned my kitchen and office and reorganized everything to avoid cross-contamination. I have not cut dairy out, but am thinking about starting to immediately. I know many people have said it can take a few weeks to feel better, but is it normal that I feel worse?

Yes, you could be going through gluten withdrawal and that can make us feel worse for a while. Hang in there......there is a lot of help for you here. :)

livelifelarge24 Enthusiast

Diane is right, gluten withdrawal can be pretty harsh. I had migraines and dizziness from it. I am a strong proponent of a COMPLETELY clean diet for at least a month. No dairy, no packaged foods, no nuts, nothing that could in your wildest dreams be an allergen. Then once you feel a big difference in yourself you can add things back in one thing per week. That way you will known of there is something else you also cannot tolerate well. Kudos to you for being so vigilant! I would be willing to bet you are either getting a tiny but of gluten somewhere still (have you checked your cosmetics, pet food etc? Chucked old collandars and a scratched cutting boards?) or maybe need ro cut out dairy and other trouble foods to give your body a chance to heal.

elizabethh Newbie

I second what everyone else said, it can make you feel crappy, just hang in there. I know when I went gluten free I felt dizzy and weak, but it gets better and when it gets better it gets WAY better! Make sure all products you're using are gluten free, lipstick/lipgloss is a big one, and having gluten free lotions and shampoos does help a lot so you have to worry less, Desert Essence organics products and most Dove products are safe. And SOAP! I KEPT getting super super sick last year and it turned out it was the soap I was using at work! (Bath and Body Works which btw if you didn't already know you should avoid it) I loved bath and body works and victoria's secret SO much, and worked at both stores. But unfortunately oats and wheat germ oil are used a LOT in their products. :( Wash your hands between touching things and your food/face/mouth. If you touch a handle to something like the fridge or a drawer for example, chances are someone with gluten on their hands has touched it, so you should wash after to avoid CC because that's a big one.

jcronan Rookie

Thanks for all of the great advice. I did go out and by some kitchenware (cutting board, pots, utensils, colander, etc.) that are only to be used with gluten free items. I also checked my shampoo, makeup etc. I did find one of my face scrubs listed wheat so I gave it away. I also cooked several meals for easy lunches so I will have good choices that I know are safe that I can bring to work or make easily when I get home for dinner.

I am optimistic that I am on the right path. It really helps to get input and support from everyone here on the forum. Sometimes it even helps to vent a little. My friends and family try, but I don't think they fully understand. They keep referring to this as a "diet" or "allergies". When I get frustrated and try to explain it all to them I have to remind myself it is new for them too and they haven't read all that I have on the subject so they will learn much slower than I will. Thanks again.

heidi g. Contributor

I haven't completely cut out gluten free processed foods or dairy and I been doing the gluten free diet and I still feel horrible.

So maybe that's what you need to do to. I have been told my alot of people you can be sensitive to certain foods and that you have to eat alot of fresh foods for a month and then you can start adding in other stuff slowly. For example I have found that corn gives me the same reaction that gluten does. So I try to stay away from high fructose corn syrup or corn syrup. Which that is hard because corn syrup is in alot of things too :(

Diane-in-FL Explorer

I haven't completely cut out gluten free processed foods or dairy and I been doing the gluten free diet and I still feel horrible.

So maybe that's what you need to do to. I have been told my alot of people you can be sensitive to certain foods and that you have to eat alot of fresh foods for a month and then you can start adding in other stuff slowly. For example I have found that corn gives me the same reaction that gluten does. So I try to stay away from high fructose corn syrup or corn syrup. Which that is hard because corn syrup is in alot of things too :(

If going gluten free meant that all we had to do is stop eating the stuff, it would be easy. But it gets complicated when we have to look for all these other foods that can be bad for us too, plus cc. *sigh* It does get better.....hang in there. :)


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



Celiac.com Sponsor (A8-M):



BabsV Enthusiast

I felt wretched for the first couple of weeks after going gluten-free -- I blame it on a combination of withdrawal AND doing a major clean out of my kitchen. Hello flour dust and crumbs! Thinking back, I should have had someone else do it...

Everyone heals differently and depending on the extent of the damage to your body and accidental glutenings (they happen, especially at the beginning...the learning curve is so step) it can be a couple steps forward and one step back. When I was diagnosed the doctor told me to give it a minimum of 3 months for ANY sort of improvement and more like 6-12 months for real improvement. I am almost 6 months into living gluten-free and while some of my symptoms improved after 2-3 months it is only now that I am seeing a real improvement in my pain issues. I am not pain free at this point but I have much less pain. I am hoping another 3 months will see me in even better shape!

You just have to stick with it and don't get discouraged. I found that dropping dairy and gluten-free replacement foods for a couple of months at the beginning really did make a big improvement overall. Actually, I have only reintroduced dairy in the last month -- the doctor said to hold off as long as I could stand it. Stick to natural simple foods. And take a probiotic. Those have proven invaluable to me in terms of getting rid of my 'gut gurgle.' If I miss taking one the gurgle comes back and takes a few days to go away. Sigh.

Good luck. It really does get better. It can just take more time for some of us!

jeanzdyn Apprentice

Everyone is different. It is my understanding that there are a few ups and downs in getting used to the new diet. Personally, I have not had any bad effects, but that could change. I have noticed that I am more sensitive to some foods. I have backed off on some foods and will try to 'rotate' those foods back into my diet to see what symptoms are triggered.

If you think that some particular food is causing symptoms stop eating that for a couple of weeks and then maybe try some and see what happens.

And try not to stress out over all this! Stress is bad. I know that it may be difficult for you not to stress with this dietary change, but you have to try to totally relax for 30 to 60 minutes each day, forget about the diet, forget about the symptoms, and focus on something else!!

Like BabsV said, "stick with it and don't get discouraged."

You can come here to the forum for encouragement and advice and to vent and whatever you need! We are all in the same boat.

SammyJ17 Newbie

Wow!! I did not know that there was a withdrawal period - although it does make sense! I am a little worried as I was just diagnosed on Feb. 2 and we are going on vacation next week - so I may be having withdrawal symptoms while away on vaca....With luck, I won't have any symptoms.

My doctor, similar to another person's post, said that the condition of my small intestine and stomach, it is going to take several months before I am better. He said that I will not even notice a difference (i.e. feeling better, less pain) for at least 3 months!

I actually have been feeling a little dizzy and have had a headache today but though I was maybe coming down with something.....

Thank you to everyone for all your posts! Not only are you helping the person that posted the original question, but you continue to help people like me who have just started the journey!

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,198
    • Most Online (within 30 mins)
      7,748

    Seeeye
    Newest Member
    Seeeye
    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

    • RMJ
      To evaluate the TTG antibody result we’d need to know the normal range for that lab.  Labs don’t all use the same units.  However, based on any normal ranges that I’ve seen and the listed result being greater than a number rather than a specific number, I’d say yes, that is high! Higher than the range where the test can give a quantitative result. You got good advice not to change your diet yet.  If you went gluten free your intestines would start to heal, confusing any further testing,
    • Bev in Milw
      Scott is correct….Thank you for catching that!      Direct link for info  of fillers.    http://www.glutenfreedrugs.com/Excipients.htm Link is on 2nd page  of www.glutenfreedrugs.com   Site was started by a pharmacist (or 2) maybe 15-20 yrs ago with LAST updated in  2017.  This makes it’s Drug List so old that it’s no longer relevant. Companies & contacts, along with suppliers &  sources would need to be referenced, same amount effort  as starting with current data on DailyMed      That being said, Excipient List is still be relevant since major changes to product labeling occurred prior ’17.           List is the dictionary that sources the ‘foreign-to-us’ terms used on pharmaceutical labels, terms we need to rule out gluten.    Note on DailyMed INFO— When you look for a specific drug on DailyMed, notice that nearly all of companies (brands/labels) are flagged as a ‘Repackager’… This would seem to suggest the actual ‘pills’ are being mass produced by a limited number of wholesaler suppliers (esp for older meds out of  patent protection.).      If so, multiple repackager-get  bulk shipments  from same supplier will all  be selling identical meds —same formula/fillers. Others repackager-could be switching suppliers  frequently based on cost, or runs both gluten-free & non- items on same lines.  No way to know  without contacting company.     While some I know have  searched pharmacies chasing a specific brand, long-term  solution is to find (or teach) pharmacy staff who’s willing help.    When I got 1st Rx ~8 years ago, I went to Walgreens & said I needed gluten-free.  Walked  out when pharmacist said  ‘How am I supposed  to know…’  (ar least he as honest… ). Walmart pharmacists down the block were ‘No problem!’—Once, they wouldn’t release my Rx, still waiting on gluten-free status from a new supplier. Re: Timeliness of DailyMed info?   A serendipitous conversation with cousin in Mi was unexpectedly reassuring.  She works in office of Perrigo, major products of OTC meds (was 1st to add gluten-free labels).  I TOTALLY lucked out when I asked about her job: “TODAY I trained a new full-time employee to make entries to Daily Med.’  Task had grown to hours a day, time she needed for tasks that couldn’t be delegated….We can only hope majorities of companies are as  conscientious!   For the Newbies…. SOLE  purpose of  fillers (possible gluten) in meds is to  hold the active ingredients together in a doseable form.  Drugs  given by injection or as IV are always gluten-free!  (Sometimes drs can do antibiotics w/ one-time injection rather than 7-10 days of  pills .) Liquid meds (typically for kids)—still read labels, but  could be an a simpler option for some products…                 
    • Ginger38
      So I recently had allergy testing for IGE antibodies in response to foods. My test results came back positive to corn, white potatoes, egg whites. Tomatoes, almonds and peanuts to name a few.  I have had obvious reactions to a few of these - particularly tomatoes and corn- both GI issues. I don’t really understand all this allergy versus celiac stuff. If the food allergies are mild do I have to avoid these foods entirely? I don’t know what I will eat if I can’t  have corn based gluten free products 
    • Kris2093u4
      Geography makes a difference.  I'm in the West and Trader Joe's gluten-free bread tastes great and is a better price than most gluten-free breads sold elsewhere in my area.  
    • JForman
      We have four children (7-14 yo), and our 7 year old was diagnosed with NCGS (though all Celiac labs were positive, her scope at 4 years old was negative so docs in the US won't call it celiac). We have started her on a Gluten Free diet after 3 years of major digestive issues and ruling out just about everything under the sun. Our home and kitchen and myself are all gluten-free. But I have not asked my husband/her dad or her other siblings to go completely gluten-free with us. They are at home, but not out of the home. This has led to situations when we are eating out where she has to consistently see others eating things she can't have and she has begun to say "Well, I can't have <fill in the blank>...stupid gluten."  How have you supported your gluten-free kiddos in the mental health space of this journey, especially young ones like her. I know it's hard for me as an adult sometimes to miss out, so I can't imagine being 7 and dealing with it! Any tips or ideas to help with this? 
×
×
  • Create New...