Would testing really be worth it in this case?

[maysarah27]

I'm so so so sorry if this kind of question gets old or is annoying. I'm just at the end of my rope and don't know where to go from here...

I've been having possible celiac symptoms for a couple of years now, but only clued in that celiac was a possibility several months ago. I have neuro based symptoms like brain fog, tension headaches, migraines, dizziness, vertigo, anxiety etc, as well as GI symptoms ranging from C/D, bloating, extreme/noxious gas, and the list goes on. I've also struggled in the past with iron deficiency and low b12, and various skin rashes that couple be potential DH?

Now the tricky bit. I'm a Canadian citizen who was living in the UK around March/April when I started looking into celiac testing, but I wasn't able to get tested there due to having to return to Canada to apply for a new UK visa. I also am not able to get tested while I am in Canada because I cancelled my provincial health coverage due to wanting to sever ties with Canada for tax purposes (I am in the process of fully emigrating to the UK). I am basically stuck in between countries without being able to get tested.

I tried a gluten-free diet from May 1 until July 1 and had an immense improvement in bloating, gas, and several neuro symptoms. Silly me decided to see if I could handle gluten a couple of days ago and the skin symptoms, bloating, gas, dizziness, brain fog and copious amounts of fatigue are back in full force. I feel AWFUL and don't know how I could possibly bear a couple of months like this in order to get properly tested when I DO go back to the UK. I just don't know if it is really worth it right now. On the one hand it would be lovely to have that rock solid evidence of a diagnosis, but then I keep thinking of how horrible I feel right now (that would not be a fun 9 hour plane ride back to the UK lol....).

Has anyone else had any similar experiences in terms of their ability to be diagnosed? I can barely function right now and don't know if I can do an entire gluten challenge. I just need some advice, support, anything...

[Zodi1993]

Hi, 

You need to have gluten in your system for the blood test to be accurate.  If you eliminate gluten from your diet than the test will not be accurate. Getting a biopsy from your GI doctor will help confirm the diagnosis.  Just eat a small amount everyday prior to testing. Try and keep a food journal so that you can pin point what, when and how your body changes when you eat gluten. Eating simple and clean foods will also help. Read the labels as Gluten is notorious for hiding out in spices, cosmetics and medicines. Make sure your kitchen is clean and you examine your risk of cross contamination. Shared cutting boards and cooking utensils is a common cause of people getting glutened. When going for your test ask about testing for other food allergies. My daughter is Celiac and found out through testing that she is also allergic to sesame seeds, shrimp and yeast. So just eliminating gluten was not enough for her. 

This forum is amazing and the wealth of knowledge and kindness is truly a blessing.