Help! With "negative" Results And Feeling Lost

[lischro]

So I just got off the phone with the b%$@#iest nurse- who informed me that my tests were negative. After a fight to get some more information about the levels, she would only say "IGA was 127 and TTG was 3." I don't even know what these mean! So any help with understanding those???

I'm on day 3 of my gluten free diet because I am convinced that is what is going on with me. I have to admit that I am disappointed and feel completely discouraged as I thought this was finally going to make everything make sense.

My plan is to keep going with the gluten-free diet and just see. I know I've read that tests can be false negatives, but now I'm feeling like I am completely done with doctors and tests. It's ridiculous the lack of empathy I've gotten from various doctors and the "I'm sorry we just can't help you" attitude.

It's gotten to the point where my family acts like I'm a hypocondriac then has no problem pointing out my lack of energy and moodiness.... hmm... here's your sign.

Sorry for the venting! I just need some support

[Dixiebell]

Sadly, some people do not have the gift of compassion. I think you should go back to the Dr. office and tell them you want a copy of your test results and then post them here.

[Tynk]

So I just got off the phone with the b%$@#iest nurse- who informed me that my tests were negative. After a fight to get some more information about the levels, she would only say "IGA was 127 and TTG was 3." I don't even know what these mean! So any help with understanding those???

I'm on day 3 of my gluten free diet because I am convinced that is what is going on with me. I have to admit that I am disappointed and feel completely discouraged as I thought this was finally going to make everything make sense.

My plan is to keep going with the gluten-free diet and just see. I know I've read that tests can be false negatives, but now I'm feeling like I am completely done with doctors and tests. It's ridiculous the lack of empathy I've gotten from various doctors and the "I'm sorry we just can't help you" attitude.

It's gotten to the point where my family acts like I'm a hypocondriac then has no problem pointing out my lack of energy and moodiness.... hmm... here's your sign.

Sorry for the venting! I just need some support

I received a false negative on my blood test for Celiac Disease when I was a teenager. My mom has the disease and was unwilling to accept the blood test result as I seemed to mimic her symptoms before she was diagnosed. She pushed and pressured our family doctor for a Biopsy. After my biopsy the surgeon informed us that I do infact have Celiac Disease.

I caution starting a gluten-free diet without having a biopsy if you want to know 100% that you have Celiac Disease. The problem with going gluten-free before a biopsy is that your Villi heal from not eating wheat/gluten. So in the end it will look as though you do not have celiac disease.

Good luck.....hope you are feeling better

[lischro]

Thank you for replying!

I'm hesitant to get a biopsy just because I think it will be expensive. My idea is to start the gluten free diet just to see if I feel better. If I feel better than I know what I should be doing as far as avoiding gluten. I've just had it with doctors. The most ironic thing of all is when I was diagnosed with hypothyroidism about 3 eyars ago (ironically I have all of the same symptoms and they completely match those of celiac) I was seeing a general interal medicine doctor. He recommended that I see an endocrinologist and a gastrointestinal specialist... so I did about a year and a half ago.

Now, the GI doc is saying they can't help me (literally, they said that) and that I should see a primary physician. ARE YOU KIDDING ME! I was referred by one to see specialists and now the specialists don't want me.... it's a mess. And even with insurance I feel like I've spent enough money on visits etc...

I can't tell you enough how much I appreciate that there are people "like me" going through similar things. Thank you guys!

[lischro]

Oh- one more thing-

Does Iga test result of 127 and a ttg test result of 3 mean anything????

I will get a copy, but just curious if this means anything to anyone....

[ravenwoodglass]

Yea you need to get a hard copy of those tests. Keep in mind that false negatives on both blood and biopsy are not uncommon.

If the IGA at 127 was a total IGA then that looks a little low IMHO. If the 127 was for the celiac IGA testing then that looks like a high or positive result.

There is IMHO no excuse for the nurse being so rude to you. Do be sure to mention it to the doctor. She deserves a reprimand.

[lischro]

Thank you, Ravenwood! What is IMHO?

[IngridBeth]

Sorry for your experience - most folks in health care professions are wonderful, but sometimes you encounter one who makes you wonder why on earth they went into a people-helping profession!

I just wanted to share that I too tested "negative" (not technically in the positive range) BUT my GP still feels there is strong enough evidence of Celiac based on my history (Fibromyalgia, IBS, etc.) and my response to gluten, and the response to going gluten-free. I think if I did not have a doctor that was so "on the ball" about it (I just casually mentioned to him that I felt worse when I ate bread and he took that seriously - I thought it was just a quirk of mine and certainly never thought it was something like Celiac!), I might still be undiagnosed. I also believe that it helps that he knows my whole history...that is part of the puzzle for sure. Anyway he said blood tests can only tell you so much, and there are other criteria for diagnosing Celiac or a gluten intolerance.

I hope you are able to find a doctor who really listens but in the mean time, maybe you are already on the right track? Good luck!

[missceliac2010]

No worries vent away! Hello!

I too have "negative" bloodwork and even a "negative" biopsy! I went through the endoscopy even and STILL got a "negative" for celiac! Despite those results, since I had been in the hospital "NPO" (eating or drinking nothing) for 3 days before those tests, I was still told to try the gluten free diet.

After having amazingly positive results from the elimination diet, my primary care doctor did not hesitate to diagnose me with Celiac Disease. My official GI doctor, however, was a different story. I went in to see him about a week after my diagnosis from my primary doc to talk to him about prescription options for if/when I am accidentally glutened. After telling him about what happened with my primary care doc, and the diagnosis, he mumbled, "well I can't officially call it Celiac without test results, but if you're feeling better gluten free then go with it." I don't know why he decided to be a jerk. But whatever, I know I have Celiac Disease, and so does my Doctor.

So there you go, that's my story! I hope it gives you hope that official diagnosis doesn't really matter as much as how you feel. You know your body, you know what it needs. Go with that.

Good luck!

Sorry for the venting! I just need some support

[ravenwoodglass]

Thank you, Ravenwood! What is IMHO?

IMHO = in my humble opinion

[lischro]

IngridBeth and MissCeliac- That is very comforting to know! I've kind of taken the approach that I will continue to test the no gluten diet to find out if it will help. I'm on day 3 and so far no changes, but am very opptimistic. I'm also a vegetarian, so it makes it a little extra challenging, but many of the things I already eat (dry beans/legumes, veggies, eggs and fruit) aren't making it seem all that bad!

I don't feel that I really need a "Diagnosis" if I can figure out how to feel better on my own.... it would just make it a lot easier to explain to family/friends and just have something tangible to hold on to... I don't know, maybe that's just me.

It makes me so angry to be told that I have "IBS" over and over again like that's supposed to help. What a cop-out diagnosis. I just want to scream: What about everything else?!

Thank you for reading!

Looking forward to losing the extreme bloating and constipation!!!!

[Marz]

Maybe this article on Celiac.com by Dr. Ken Fine will cheer you up. It certainly helped me when I got negative blood results:

Early diagnosis of gluten intolerance

He argues that current tests diagnose the disease too late. Compare it to catching heart problems early - you don't get "positive" results only when you've already had a heart attack. The tests for heart problems focus on picking up the problem before it becomes a full-blown disease. Unfortunately with celiac disease, the blood tests often only pick up the disease when it's full blown celiac disease. We should focus on sorting out the problem before it gets to that stage! He explains it much more eloquently.

After that, I was happy with my results - thought that I had maybe caught the gluten intolerance in the early stages, before my gut was too damaged! Not sure if that's really the case, but it makes me happier sticking to the diet

[missceliac2010]

Marz

Totally agree. My dad was very sick when he was formally diagnosed. I mean like skin and bones, major D and vomiting. Doctors were saying maybe cancer! O my! I am thrilled to not gotten that sick. No thanks!

I'll take a before my death bed mild/inconclusive test result!

Amen. Lol!

[Skylark]

I'm not diagnosed. I had to figure out why I had "gastritis" and "IBS" (plus a dozen other problems) on my own.

Some people find the gluten-free diet too restrictive or really want a diagnosis. Don't sweat the doctors if you don't need a piece of paper to follow the diet you need to be healthy.