Negative blood test...feeling lost

[Celifack]

Hi everybody, 

I have had symptoms of Celiac since mid pregnancy and they have gotten worse over the last 5 months post partum. I have constipation, periods stopped, extreme fatigue,  joint pain, weak muscles, dizzyness, migraines, light sensitivity,  pins and needles in hands and feet, elevated TSH, depreason and anxiety. Was put on thyroid meds but it didn't help any of my symptoms. My doctor told me to try gluten free and reintroduce it. I tried it for 2 weeks and started feeling quite a bit better, then reintroduced it and felt worse than ever! It's definitely a gluten problem. She suggested I get the Celiac panel run so I got tested for Ttg iga, DGP igg and EMA all came back NEGATIVE! by this point I had only reintroduced gluten for a few days. She said my antibodies shouldn't go down by much in this time frame. Should I push for a referral to a GI doctor? I don't know why I feel the need for diagnosis? Probably my mother in law laughing when I said I can't eat gluten anymore and she tried to offer me things like donuts, saying it's just a little.  She just doesn't get it. So now, do I suffer for 6 weeks to get the biopsy or just stop eating gluten and be done with it. 

I have also noticed while introducing new foods to my baby that he throws up whenever I give him anything wheat based. I doubt they can diagnose a baby and I refuse to damage his intestines for a diagnosis. 

Maybe I should get my daughter tested as well? She is 3 and has been complaining of upset tummy and is frequently constipated. She is growing well though but is also quite thin. She is not a big eater. She may be constipated because she holds it. She is afraid to poop on the potty.

Since I have had symptoms for only about 10 months, could there not be much damage yet?

Sorry for the long post! 

[notme]

my celiac was triggered by pregnancy.  had no clue.  symptoms creeped up (started with indigestion, deemed as 'colitis' or 'ibs') but eventually all the ones you mentioned above all joined the party.  sounds like you are headed in the right direction.  one of the points of diagnosis is the reaction to the gluten-free diet.  keep digging.  half the people on here don't have a firm diagnosis (science really needs to catch up with this disease)  and a false negative blood test is fairly common, for whatever reason - if you've not been eating gluten every day for like 8 weeks, it may not detect antibodies, which is what these tests are measuring.  sorry you're having this dilemma!  hope you find some answers.

[ironictruth]

Get your thyroid checked out in a thorough manner. It can cause really wacky stuff. And lots of folks with thyroid issues are gluten-free. 

My brother had negative celiac bloodwork and a positive biopsy. My thyroid ultrasound presents like Hashimoto's but my serum levels are fine and I have normal thyroid antibodies. My neck hurts like hell though.

I have also read that there are ttg antibodies which are not routinely tested for in the US. Ttg 6 has CNS involvement. 

You can also be gene tested to possibly rule out celiac. My brother's son is gene positive, has confirmed food allergies and throws up if exposed to gluten.