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

Post-gluten Free And Feeling Terrible

leadmeastray88

Recommended Posts

leadmeastray88 Contributor
leadmeastray88
Posted

Its been exactly a week today that I started gluten free, and while I felt great in the beginning, I felt terrible last night and feel terrible again today. I have bad stomach aches and cramping again.

I'm trying to be as careful as I can with cc as I am living with my family who is not gluten free, and am sticking to simple foods, as well as cutting our dairy and soy for now.

Did you guys feel terrible too at first, post-gluten free?

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

Celiac.com Sponsor (A8-M):


spunky Contributor
spunky
Posted

You might want to keep in touch with a trusted doctor to rule out other stuff, but for me going gluten free resulted in only mild improvement after the first two weeks...hardly noticeable improvement, then a bumpy road for the next several months. Apparently some people are lucky and get better faster.

The improvement for me was so gradual and slow it was ridiculous, and it took 2 full years for me to finally really start to feel GOOD most of the time.

So don't expect too much too soon. Also, though, make sure you are in fact staying completely away from gluten grains and gluten-derived ingredients.

Cath724 Apprentice
Cath724
Posted

Yes, many of us go through the gluten "withdrawal"-- check out some of these threads that others have shared on this...

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

I've only been gluten-free 3 weeks and am thinking about tracking what I eat to try to trigger what makes me feel worse, so you may want to try that---other food sensitivies seem to appear once you go gluten-free, it seems. For example, I was never lactose intolerant but am terribly so right now since I went off the gluten, but folks on here say that this is sometimes just a temporary reaction. You may also feel worse after ingesting soy, I'm told, and may also be reacting from less yeast.

sickchick Community Regular
sickchick
Posted

I had aweful withdrawls. I wanted to punch anyone who looked at me! And I am so not violent! I stayed inside my apartment for like 2 weeks! lol!

I am completely off Dairy and Soy. I just deal with it (I use coconut milk now and love it) I use coconut oil in recipes instead of butter.

Also I didn't ever feel completely good (without having 'd') until I cut out Nighshades and Soy Lecithin.

You'll do it all in your own time. I needed time to mourn over salsa and pasta sauce :lol:

I would be lying if I said I didn't miss Chipotle and Chilis. You get used to it though and once you stop feeling like crap it will all be worth it....

like curry?

Hang in there...you are worth it! B)

sickchick

leadmeastray88 Contributor
leadmeastray88
Posted
  • Author
Yes, many of us go through the gluten "withdrawal"-- check out some of these threads that others have shared on this...

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

I've only been gluten-free 3 weeks and am thinking about tracking what I eat to try to trigger what makes me feel worse, so you may want to try that---other food sensitivies seem to appear once you go gluten-free, it seems. For example, I was never lactose intolerant but am terribly so right now since I went off the gluten, but folks on here say that this is sometimes just a temporary reaction. You may also feel worse after ingesting soy, I'm told, and may also be reacting from less yeast.

Thank you for those links to those other threads - I know the questions around here can get somewhat repetitive, so I apologize :P

A food diary - that sounds like a good idea! I think I'll try that.

Thank you both for your responses.

leadmeastray88 Contributor
leadmeastray88
Posted
  • Author
I had aweful withdrawls. I wanted to punch anyone who looked at me! And I am so not violent! I stayed inside my apartment for like 2 weeks! lol!

I am completely off Dairy and Soy. I just deal with it (I use coconut milk now and love it) I use coconut oil in recipes instead of butter.

Also I didn't ever feel completely good (without having 'd') until I cut out Nighshades and Soy Lecithin.

You'll do it all in your own time. I needed time to mourn over salsa and pasta sauce :lol:

I would be lying if I said I didn't miss Chipotle and Chilis. You get used to it though and once you stop feeling like crap it will all be worth it....

like curry?

Hang in there...you are worth it! B)

sickchick

That's so nice, thank you for the encouragement :)

It has been very frustrating lately - I can't even describe it. And my lab hasn't arrived from Enterolab yet which is making me very anxious! Hopefully in the next couple weeks I'll have some answers. :P

TammyK Apprentice
TammyK
Posted

Did your doctor order the lab from EnteroLab or did you do this personally for yourself? My daughter had a negative blood test too and I am trying to decide if I need to take the panel as well. My ND suggested it. What are you looking for? Can EnteroLab diagnosed Celiac or does it just "gluten sensativity"? Guess I am trying to figure out if it will be helpful even though I know she can't eat gluten.

Try to remember that you are on the road to healing. We just spent numerous weeks dealing with seizures and migraines in our 11 yr old daughter caused by gluten. It was very stressing but now I feel myself coming off the "high" of it all. For weeks I was reading or dealing with doctors to figure it all out. It took time to pin triggers. (Yet I know it's not all over but the initial craziness is).

You will soon understand your body better. This time is critical to putting all the pieces of the puzzle together. Food and symptom diaries are extremely helpful.

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

Celiac.com Sponsor (A8-M):


rsm Newbie
rsm
Posted

the first week was heaven, then up's and downs for a good six months. Hang in there! (16 months now.)

leadmeastray88 Contributor
leadmeastray88
Posted
  • Author
Did your doctor order the lab from EnteroLab or did you do this personally for yourself? My daughter had a negative blood test too and I am trying to decide if I need to take the panel as well. My ND suggested it. What are you looking for? Can EnteroLab diagnosed Celiac or does it just "gluten sensativity"? Guess I am trying to figure out if it will be helpful even though I know she can't eat gluten.

I ordered the tests from Enterolab myself, because my surgeon refused to scope me and I'm sick and tired of waiting around. I don't want to wait another 6 months to get into a gastro when these tests take 3 weeks to get back.

I ordered the gluten sensitivity stool panel, the gluten sensitivity/celiac gene panel, the milk sensitivity panel and the malabsorption panel.

To me, a diagnosis of celiac isn't necessary - as long as I know I'm sensitive to gluten - the treatment is the same either way

sickchick Community Regular
sickchick
Posted

Waiting is the hardest!!! B)

ericajones80 Newbie
ericajones80
Posted

yea I'm not too much of a fan of the waiting either

rmducote Apprentice
rmducote
Posted
Its been exactly a week today that I started gluten free, and while I felt great in the beginning, I felt terrible last night and feel terrible again today. I have bad stomach aches and cramping again.

I'm trying to be as careful as I can with cc as I am living with my family who is not gluten free, and am sticking to simple foods, as well as cutting our dairy and soy for now.

Did you guys feel terrible too at first, post-gluten free?

have you also checked any medications and all over the counter items,as well as toothpaste and mouthwash?

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,198
    • Most Online (within 30 mins)
      7,748
    Jamie0230
    Newest Member
    Jamie0230
    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

    • Scott Adams
      Does Dailymed.nlm.nih.gov site have filters for gluten?

      By Scott Adams · Posted

      Clearly from what you've said the info on Dailymed is much more up to date than the other site, which hasn't been updated since 2017. The fact that some companies might be repackaging drugs does not mean the info on the ingredients is not correct.
    • RMJ
      Waiting Gastroenterology review

      By RMJ · Posted

      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
      Does Dailymed.nlm.nih.gov site have filters for gluten?

      By Bev in Milw · Posted

      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
      Food Allergies

      By Ginger38 · Posted

      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 
    • JForman
      7yo struggling!

      By JForman · Posted

      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...