If not celiac, gluten intolerant perhaps? Help 😭

[Hayley-1982]

Hi everyone 

I went to my GP in Feb as i was feeling ridiculously tired. Planning naps in the afternoon, and waking up looking forward to going back to bed again later. After blood tests it was picked up that I was very deficient in b12 and folate.

I've had 2 negative celiac blood tests, my third is pending.

I have kept a food diary over these past few weeks as I have had increasing symptoms. Tiredness that won't go away, stomach spasms, involuntary twitching in arms and legs, itchy skin, going between d and c, awful gas and awful headaches, almost daily - which I don't usually suffer from. I basically feel miserable. I have no energy and feel like I am just existing!

I'm already on fluoxetine, I take an anti histamine every day for the itching. I was also prescribed b12 and folate supplements until they can get to the bottom of my deficiency. 

I have had to eat a normal gluten diet in preparation for the tests, which I had yesterday.

Today I have been gluten free. I feel very heady and tired, but then I don't expect to feel better overnight.

I don't know if I'm celiac yet, but if not, I strongly believe I'm gluten intolerant.

I just miss being me.

Thanks for reading xx

[cyclinglady]

Hi!

Make sure you are getting the complete celiac panel which includes the TTG, DGP and EMA.  Know that some celiacs are seronegative.  Know that people like me never test positive to the more popular screening TTG IgA and TTG IgG versions yet intestinal biopsies proved otherwise.  All celiac disease testing requires you to be on a full gluten diet.  The blood tests require about 8 to 12 weeks of gluten to be consumed prior to the blood draw..  Less and you might get a false negative.  Even though your blood tests were negative (you might not have had all the celiac blood tests) your GI might want to do an endoscopy.  That requires you to be consuming gluten daily.

the B-12 should  help.  Be sure it is sublingual (under the tongue) and preferably methylated.  If your stomach or small intestine is damaged, you can not absorb it well in those locations.