Waiting For Results

[HilHil]

Hello- I am new to understanding Gluten Sensativity and Celiacs. I went 100% certified gluten free for 5 days and felt amazing. I started to slowly bring 1 gluten item back into my diet and it has been down hill spiral. Hand aches, tingling, feels as though I swallowed saw dust, jaw pain, lower back pain, extremely tired, change in mood. I had 2 coronas on Sunday and I now have severe stomach cramps, diarrhea, muscle spasms. I am miserable and want to go back to gluten free. My Celiacs gene test results should be back by the end of the week. Has anyone ever had these symptoms?

[beth01]

Welcome to the club.  I think we have all had these symptoms at one time or another.

 

I would recommend reading the newbie thread and learn about cross contamination.

 

Are they doing more than the gene testing?  Are you having an endoscopy?  You need to still be eating gluten for the endoscopy.

[Georgia-guy]

Welcome HilHil! As Beth said, you still need to be eating gluten for testing to be accurate. The genetic test only tests to see if you carry the gene for celiac, and is not a diagnostic test. Your doctor should also order the following tests:

Ttg IgA

Ttg IgG

IgA total syrum

Dgp IgA

Dgp IgG

The IgA total syrum test is important because many people with celiac will be IgA deficient, causing a false negative on the ttg IgA and dgp IgA tests. Until all testing is complete, you do need to continue eating gluten at a normal level to avoid a false negative (celiac reacts to gluten in your system, so without gluten a reaction won't be present for the tests to see). I know it's hard, I went gluten free for a week and a half at my dietician's recommendation to see if my issues faded, and then had to eat gluten again for almost 2 months before I was able to get the blood tests done to check for celiac. People with celiac also tend to have issues with more foods than just gluten (dairy and soy being the 2 I have heard the most), so it is also wise to keep a "food and symptom journal" to keep track of what you eat, and when symptoms occur.

[HilHil]

They tested me for Limes, Lupus, Crohns, bacterial infection and all the standard testing. I had to request the Celiac Gene. I wanted to see if I had the gene before going through all the Celiac testing. Since my insurance changed in Jan I have to be careful. If the gene comes back positive then I will have no choice to go gluten again ( and be horribly sick, I imagine) and have the full tests completed. I know something is not right, my body is telling me. There are so many people who don't know anything about gluten sensitivity or Celiacs, people look at me like I am crazy. Hopefully the tests will come back with something. I have missed 3 days of work because of how bad I have felt, today I am forcing myself to go in. Thanks for all the details and replies on my last post!

[beth01]

I love insurance companies.  You would think they would pay for the panel before they would pay for the gene testing. I looked into getting the gene testing done and it was between 8 and 10 thousand dollars!!! The whole celiac panel doesn't cost that combined.  I hope you get the answers you need, it's no fun feeling like crap all the time.