Post-gluten Free And Feeling Terrible

[leadmeastray88]

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?

[spunky]

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]

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]

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

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!

sickchick

[leadmeastray88]

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

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

Thank you both for your responses.

[leadmeastray88]

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

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!

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.

[TammyK]

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.

[rsm]

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

[leadmeastray88]

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]

Waiting is the hardest!!!

[ericajones80]

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

[rmducote]

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?