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

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
      131,600
    • Most Online (within 30 mins)
      7,748
    rita jean
    Newest Member
    rita jean
    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

    • Wheatwacked
      Potential celiac need advice

      By Wheatwacked · Posted

      Yes.  Now, if you hit your finger with a hammer once, wouldn't you do your best not to do it again?  You have identified a direct connection between gluten and pain.  Gluten is your hammer.  Now you have to decide if you need a medical diagnosis.  Some countries have aid benefits tgat you can get if you have the diagnosis, but you must continue eating a gluten-normal diet while pursuing the diagnosis. Otherwise the only reason to continue eating gluten is social. There are over 200 symptoms that could be a result of celiac disease.. Celiac Disease and Non Celiac Gluten Sensitivity  both cause multiple vitamin and mineral deficiency.  Dealing with that should help your recovery, even while eating gluten.  Phosphatidyl Choline supplements can help your gut if digesting fats is a problem,  Consider that any medications you take could be causing some of the symptoms, aside from gluten.        
    • trents
      Potential celiac need advice

      By trents · Posted

      Welcome to the forum, @Ben98! If you have been consciously or unconsciously avoiding gluten because of the discomfort it produces then it is likely that your blood antibody testing for celiac disease has been rendered invalid. Valid testing requires regular consumption of generous amounts of gluten. The other strong possibility is that you have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms with celiac disease but does not have the autoimmune component and thus does not damage the small bowel lining. It is 10x mor common than celiac disease. There is currently no test for NCGS. Celiac disease must first be ruled out. Some experts in the field believe it can be a precursor to the development of celiac disease. Having one or both of the primary genes for developing celiac disease does not imply that you will develop active celiac disease. It simply establishes the potential for it. About 40% of the population has the genetic potential but only about 1% develop active celiac disease. 
    • Ben98
      Potential celiac need advice

      By Ben98 · Posted

      TTG blood test and total IGA tested on many occasions which have always remained normal, upper GI pain under my ribs since 2022. I had an endoscopy in 2023 which showed moderate gastritis. no biopsy’s were taken unfortunately. genetic test was positive for HLADQ2. extreme bloating after eating gluten, it’ll feel like I’ve got bricks in my stomach so uncomfortably full. the pain is like a dull ache under the upper left almost like a stitch feeling after a long walk. I am just wanting some advice has anyone here experienced gastritis with a gluten issue before? thank you  
    • Wheatwacked
      Unusual bright yellow but odourless discharge

      By Wheatwacked · Posted

      "Conclusions: The urinary iodine level was significantly lower in women with postmenopausal osteoporosis, and iodine replacement may be important in preventing osteoporosis"  Body iodine status in women with postmenopausal osteoporosis Low iodine can cause thyroid problems, but Iodine deficiency will not show up in thyroid tests.  Iodine is important for healing, its job is to kill off defective and aging cells (Apoptosis). Skin, brain fog, nails, muscle tone all inproved when I started taking 600 mcg (RDA 150 - 1000 mcg) of Liquid Iodine drops. Some with dermatitis herpetiformis, Iodine exacerbates the rash.  I started at 1 drop (50 mcg) and worked up to 12 drops, but I don't have dermatitis herpetiformis.
    • cristiana
      How long does it take to gain weight?

      By cristiana · Posted

      That's great news, you can do this.  Let us know how things go and don't hesitate to ask if you have any more questions. Cristiana 😊
×
×
  • 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.