Negative Celiac Panel Test (3 Times)

[discodiver]

I've had 3 celiac panel tests done and each one has come back negative. I love my GI doctor but she thinks I'm crazy with this "Gluten Intollerance" stuff. I've also had 3 colonoscopys done and she has also told me that there is no evidence of Villi damage or Celiacs Disease. It that is true...then why do I feel like crud after eating a hamburger? This past Sunday I felt great and the family decided to stop and get something to eat. I ordered a hamburger and onion rings and with 3 hours of eating them my anxiety/deperssion was out of control. I could not think straight, could not concentrate and had a rage that scared me.

Here is the strange thing. I do not seem to experience the typical GI problems associated with Celiacs disease/Gluten Intollerance that most people do. My problems are all with anxiety, muscle aches, headaches, joint pain, extreme fatigue and brain fog. Could this be so? Anyone else have a similar experience.

Also...how long do typical symptoms last after eating gluten? I know we are all differnt but a general time frame would be wonderful. As I mentioned earlier...I had a hamburger Sunday afternoon and I still feel like 10 miles of dirt road. Thanks in advance for any help.

[sb2178]

Which tests have you had done? Neuro stuff tends to show up in an older form of the test (IgA and IgG anit-gliadin antibodies). Celiac is typically diagnosed with an upper endoscopy (top of the intestines, right after the stomach), not a colonoscopy (bottom of the intestines). You also need to get a bunch of biopsies taken, one or two is not enough.

Have you also had a total IgA done?

Have you been tested for: fructose intolerance, diabetes (blood sugar swings can totally screw you up), wheat allergy?

Have you tried the diet? It may be worth it to just do the diet even if you can't get a diagnosis.

Those are all my ideas. Good luck.

[mommyto3]

I had neuro symptoms for a long long time before any GI symptoms started to show up. I had (and still get if I'm glutened) twitching, shooting nerve pains, increased sensitivity to touch (ie seams drive me crazy), brain fog, and pretty bad depression. The symptoms tend to last anywhere from 1 to 3 days depending on how much I ate.

I had the IgA test done by Enterolab which showed both gluten intolerance and an autoimmune reaction to gluten. I never bothered with the blood test or endoscopy because I refuse to go back on gluten (my blood test would be neg without ingesting gluten for a while since I've been gluten free for 4 months).

Try going 100% gluten free and see how you feel. With me the change was instant and undeniable. I was gluten free for about a month before I decided to go with Enterolab just to confirm.

Good luck!!!

[Skylark]

You live with your body; your doctor does not. It's great that you don't have celiac antibodies or damage because you can absorb your food.

You are gluten intolerant, which pretty much requires the same diet as celiac. Doctors aren't very smart about gluten intolerance, but gluten can definitely make you anxious, tired, and sore.

I haven't eaten a hamburger bun worth of gluten for years. Last time I ate mocchi balls that had a little wheat flour mixed in with the rice (oops) I was anxious for four days.

[ravenwoodglass]

First off if your doctor is looking for celiac evidence in a colonoscopy the doctor is clueless. You need to go in from the other end with an endoscopy. If you choose to have that test done I would go to a different GI doctor to have them do it. However you can have neuro issues for a long time before GI stuff shows up. You can also have celiac and have negative celiac panels. I can't count the number of times they did panels on me and all were negative. I don't know why but somewhere between 20 and 30% of us will have false negative panels.

When you done with all the testing you choose to do then do give the diet a good strict try. Your body will know the answer.

[tater218]

I had the biopsy during an exploratory upper endo and they told me it was possibly celiac and wanted me to do a gluten challenge by eating 4 slices of 12 grain bread a day for 30 days and repeat the biopsy. I haven't even had my blood work yet (thats tomorrow) My GI dr told me he's pretty sure that it is celiac disease but to be sure he wants to do the challenge. After he told me this, and they were not looking for Celiac, they were expecting to find ulcers and stuff in there. I started reading up and I'm just like WOW, answers to so much that I thought was jus tme being unhealthy or whatever, its all symptoms of celiac! Brain fog, headaches, bloating/gas, constipation but severe diarrhea at times, my hair falls out (has for years), nausea and this is just some of the stuff I have been dealing with for years! I started cutting back glutenous foods right away and saw mild improvement, and everytime I ate something with gluten I felt like crap on a stick again. My dh and I discused it and there is no medical treatment for it other than diet, I can change my own diet, I'm going to do the panel test tomorrow, but I will not do a gluten challenge. I can't justify putting myself in so much pain, and sickness just to get a diagnosis that they basically already know. I do know that I have the gene for it, that was found on earlier labs, my ALT is high, I'm Vit D and Vit B12 deficent, and those are the things they checked. I am a firm believer in the theory if it makes you feel bad, don't do it. Negative tests or not, if eating a hamburger doesn't go over well, don't eat them. I have read so many stories about false negs, misdiagnoses, etc.. do what makes you feel best. Good Luck!

[anabananakins]

Here is the strange thing. I do not seem to experience the typical GI problems associated with Celiacs disease/Gluten Intollerance that most people do. My problems are all with anxiety, muscle aches, headaches, joint pain, extreme fatigue and brain fog. Could this be so? Anyone else have a similar experience.

I vote try the diet. You might feel amazingly better. I do and I don't test positive either. You have to be strict though. It gets much easier.

However, as better as I feel now, there were other things wrong with me that might be problems for you. The fatigue and muscle aches could be Vitamin D. I knew nothing about it being an issue but when my specialist said I needed to exercise more (for my insulin resistance) and when I complained that I was too tired and everything hurt he test my Vit D and it was insanely low. I know feel like an ambassador for Vitamin D testing!

And another doctor put me on nystatin for candida and that has done wonders for my brain fog and sugar cravings. Things to consider/investigate maybe? Part of me is annoyed that it took seeing so many doctors to sort this stuff out, like each fixated on a particular symptom and how to fix rather than considering all the possibilities, and it means my records are all over the place. At least it's all the same pathology lab doing the tests so if I ask for re-tests on any of these the prior results will show up. And it's nice seeing results at last, even if I do feel like all I do is pay attention to my health. I've learned though, no one else will!