Trial For Chronic Fatigue

[organicmama]

I'm not really sure if I am allergic, gluten sensitive, or not, with only the controversial IgG tests showing positives for gluten, wheat, and casein. I am doing a trial Gluten-free Casein-free diet to see if that works.

What should my expectations be regarding improvement? I have been on the diet since 5/10. I feel mildly better, but still often fatigued. I am only 33 years old. I am not sure when to expect improvement or assume that it's not gluten and casein. The doctors in my area are less than helpful and can offer little insight.

[SarahJimMarcy]

My daughter is 13, we've been gluten free for 10 weeks and she is now starting to feel better. (As are we all - even those of us who tested negative for celiac.) It takes a while. She is still fatigued and we found her Vitamin D level low on a recheck. And she's a kid! Keep going. If you're feeling mildly better now, you should continue to improve. :-)

[organicmama]

Thanks for the reply. After reading about all of the potential side effects, I thought I'd finally found an answer to my unexplained neuro, autoimmune, and pain issues for the past nine years. Now after having been on the diet a month without significant improvement, I'm starting to be concerned that I'm not getting much but a placebo effect. The diet has not been hard for me though, so I will try to be hopeful and carry on.

[adab8ca]

Thanks for the reply. After reading about all of the potential side effects, I thought I'd finally found an answer to my unexplained neuro, autoimmune, and pain issues for the past nine years. Now after having been on the diet a month without significant improvement, I'm starting to be concerned that I'm not getting much but a placebo effect. The diet has not been hard for me though, so I will try to be hopeful and carry on.

Oh, it can take much much longer to feel better (not to discourage you). I had neuro problems and pain and I have been into this 9 months and am starting to see improvement.

Be good to yourself, take it one day at a time but the changes may not be quick. Patience is a virtue in this stupid celiac game. Everyone told me (the Dr's) that I should start to feel better in a few days but everyone is different.

[organicmama]

I guess with so much advice to try for 2 wks, 4 wks, etc., you expect there to be a big change in that time.

[notme]

i have been recovering (gluten-free) since july of last year and i STILL over-do it when i am feeling good! i can do more and more but some days i feel like i could take a nap for no apparent reason. reminding myself that i was misdiagnosed/doing damage for 25 years; it's going to take awhile for things to mend properly. and every month my period (not only does it sneak up on me - used to be a straight 28 day on the money never fail - now it is wildly irregular) knocks me *out.* so goodnight zzzzzzzzzzzzzz........

[TexasJenn]

I don't have any insight about what to expect and when, as I have only been gluten-free since 6/3. I am young, like you (32 years old) diagnosed 6/2 with Celiac. My only symptoms are chronic fatigue and muscle pain, and I'm not sure when to expect to notice a difference, either. But I wanted to encourage you to hang in there! From what I have read on here, GI symptoms seems to resolve more quickly, but the overall blah feeling can take quite a while longer. I guess maybe that's because damage done to the small intestine takes time to heal, and then you need to start absorbing nutrients properly for a while before nutritional deficiencies are corrected. It makes sense that it would take some time, but I imagine it will be frustrating to not feel better after a while of this drastic diet/lifestyle change.

Hang in there!

Jenn