I did answer you on the lupus board but will also post here. Yes, you can still have celiac if your bloodwork is negative. Have you ever tried to go gluten free? If you were gluten free when your celiac bloodwork was done, it would come back negative. But false negatives are common in any case.
You can test yourself for gluten sensitivity by simply going on the gluten free diet (see this gluten-free how-to guide
for help with this), then after a week or two, try eating gluten again and see what happens. Generally you will know pretty quickly if you are gluten sensitive or not...you will feel good while gluten-free and bad when you go back on gluten. Unless you are one of the rare celiacs who are asymptomatic or "silent" celiacs, but you say you have gastro symptoms, so I doubt that you are in that category.
Speaking of symptoms, some common ones are (from celiac.com):
Diarrhea or Constipation
Steatorrhea (fatty stools that float rather than sink)
Any problem associated with vitamin deficiencies
Iron deficiency (anemia)
Unexplained weight loss (or weight gain)
Easily fractured bones
Abnormal or impaired skin sensation, including burning, prickling, itching or tingling
Peripheral neuropathy* (tingling in fingers and toes)
Some people on celiac.com have used the stool testing offered by Enterolab (www.enterolab.com); I haven't used them but I understand that they do not diagnose celiac but they will tell you if you are sensitive to gluten. They also test for the celiac genetic markers, HLA DQ2 and HLA DQ8. Insurance will usually not cover these tests so you would have to pay. You don't need a doctor to order these tests however.
You have a family history of autoimmune disease, you have a positive ANA, gastric issues, joint pain, Raynaud's, fatigue, etc.....a lot of your symptoms sound like celiac disease and others sound more like lupus. I should mention that good doctors rarely go ONLY by bloodwork....they also take your symptoms into account when making a diagnosis. It's possible that you have multiple autoimmune disorders which makes it harder to figure out what's going on....it's difficult to disentangle all of the symptoms, etc. That's been one of my biggest problems; I'm still trying to figure everything out and I've been through years of doctors appts and bloodwork, MRIs, endoscopies and colonoscopies, lumbar punctures, etc, etc.
I've probably had celiac disease most of my life, and I started developing other AI diseases in childhood/teen years. Celiac disease can "
open the door" for other AI diseases to develop (see this article
for how this works). As you can see in my signature, I've been diagnosed with Hashimoto's thyroiditis, psoriasis, autoimmune hepatitis, rheumatoid arthritis, something that may be lupus or maybe not, etc. I blame celiac for some of these and Lyme disease for the fibromyalgia and maybe some of the other AI diseases.
The other question is, have you been tested for Lyme disease? Lyme can cause elevated ANA and many many other symptoms. It can both mimic and trigger autoimmune diseases and fibromyalgia. You should know that the standard bloodwork for Lyme disease is not sensitive enough to detect most cases of Lyme. You can call Igenex labs and they will send you a test kit to take to your doctor. Igenex is one of the few labs in the country that uses the most up-to-date methods for testing. To find out about
others you can ask on the Lyme disease forum; I just know about
Igenex because that's who I used.
But like most Lyme disease doctors/labs, Igenex doesn't take insurance so you have to pay up front and get your insurance to reimburse you. I ended up positive for Lyme disease when I thought that NEVER in a million years could I possibly have it. I'm not the outdoorsy type.
Anyway, this post is way too long now and I apologize for that, but I wanted to get everything out there for you to think about
Good luck....keep us posted!!
Lyme Disease, AIH, Hashimoto's, "lupus-like" CTD?, fibro, RA, celiac disease, asthma, psoriasis, Raynaud's, hypertension, osteopenia, sleep apnea, RLS, GERD, degenerative disc disease, cubital tunnel, tarsal tunnel, Doxycycline, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP, Darvon, Morphine Sulfateautoimmunediseasesgfliving.blogspot.com