Negative Tests- Good News, But Sooo Frustrating!

[Kelsie]

Hi,

 

So, my testing is not going well (or going well, depending how you look at it lol).  I've had a colonoscpy, endoscopy and celiac blood work (although the GI doc only ran one blood test): ....all negative.  I am staying on a gluten diet, despite my symptoms, as my Rheumatologist may want to send me to another GI for a second opinion.

 

Continuing Symptoms:

- insomnia- most night I can't get to sleep until 1-4 am

- morning fatigue, even on night where I can fall asleep around midnight and get 7 hours sleep, I'm a zombie until 2-3 pm, then I wake up and feel more normal

- BM's- not regular, foul smelling, sticky, sometimes yellow.  Yesterday was almost grey like and looks like clay! ewww

- swollen eyelids in the morning, sometimes with hives

- headaches, occasional migraine with flashing lights when I close my eyes

- gas, bloating, cramping- although this doesn't always happen

 

Before I started my testing, I was gluten free for a long time, with the occasional cheat meal.  Then I got really sick....constant diarrhea for like 8 weeks, going to the bathroom 12-15 times a day.  I was totally drained, lost about 20 lbs.  During that 8 weeks, prior to testing, I was only able to eat rice and oatmeal.  I did a three week gluten challenge before my endoscopy.  But when the blood test was done, I was more or less Gluten free.  I am starting to think that wasn't enough of a gluten challenge?

 

Hopefully my RA doc will have a good plan, I am not sure how long I can continue eating gluten, but I really do want answers

 

 

[BlessedMommy]

I'm sorry that you don't have a clear answer! Could you stay on gluten long enough to get the rest of the blood work run? It's best to run all of the blood tests, if only one is run, it may miss celiac.

 

If the doctor refused to order it, you can order it through a private lab and self pay. 

[Kelsie]

Thanks Ruth, yes I am staying on gluten until I can see who the RA doc's will be sending me to for a second look.  I will request the full blood work at that time, I just hope its not months from now that I can get an appt