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Negative Test Result

scaredblossom

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scaredblossom Rookie
scaredblossom
Posted

So the Dr called today and my Celiac sereology was negative! I told him I have been eating gluten free since the test and he said ok and left it at that! Now what??? I have also noticed that I and my daughter's have a butterfly shaped rash across the bridge of our nose and cheeks! theirs is more noticiable than mine since I wear make-up most of the time! How closely related is Lupus and Celiacs??? Should I keep eating this diet and do I need to be as strict!!

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cristalbleu13 Newbie
cristalbleu13
Posted

So the Dr called today and my Celiac sereology was negative! I told him I have been eating gluten free since the test and he said ok and left it at that! Now what??? I have also noticed that I and my daughter's have a butterfly shaped rash across the bridge of our nose and cheeks! theirs is more noticiable than mine since I wear make-up most of the time! How closely related is Lupus and Celiacs??? Should I keep eating this diet and do I need to be as strict!!

have you been diagnosed with celiac disease before ??

scaredblossom Rookie
scaredblossom
Posted
  • Author

have you been diagnosed with celiac disease before ??

No but all my symptoms pointed to it!! After my endoscopy, small bowel series, and celiac sereology test I took myself off gluten and have been feeling much better!!

pricklypear1971 Community Regular
pricklypear1971
Posted

Did they ever test you for Lupus?

ravenwoodglass Mentor
ravenwoodglass
Posted

If your feeling better on the diet stay on it. Also be sure to get actual copies of all tests and lab reports.

cristalbleu13 Newbie
cristalbleu13
Posted

No but all my symptoms pointed to it!! After my endoscopy, small bowel series, and celiac sereology test I took myself off gluten and have been feeling much better!!

If the endoscopy showed that you had a celiac disease that means you'll have it all your life it's like me i'd been on gluten free diet for 16 yrs then stopped and after 4 years i started havong ibs symptoms , stomach problems , lost weight , anxiety and panic attacks and much more and i believe it's it back again so went back on diet again without talking to the doctor , i did the test was negative but i'll do the endoscopy and see what i've got inside , and yeah if you have been on gluten free diet nothing will show up good luck that all what i can say ;)

Lisa Mentor
Lisa
Posted

If your feeling better on the diet stay on it. Also be sure to get actual copies of all tests and lab reports.

Yes, Raven is correct. Too often here, we see false test interpretations by the medical field, or incomplete testing.

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scaredblossom Rookie
scaredblossom
Posted
  • Author

All tests were negative!! and now my insurance has lapsed I don't want to go back on gluten!! It made me too sick and I feel so much better!!

scaredblossom Rookie
scaredblossom
Posted
  • Author

Never tested for Lupus though wondering if we should be now!!

pricklypear1971 Community Regular
pricklypear1971
Posted

Well, Celiac and Lupus are both autoimmune diseases. Some Lupus patients have Celiac, vice versa.

Some AI patients respond to a gluten-free diet without being Celiac. Perhaps they are NCGI - who knows? Perhaps it helps because it reduces inflammation.

At any rate, if you have the prototypical Lupus rash I would suggest testing. If gluten-free helps, then stay that way.

scaredblossom Rookie
scaredblossom
Posted
  • Author

Ughhhhh just so stumped and feel stupid here I am back to being the hypochondriac again!!! :( Oh BTW what is NCGI?

pricklypear1971 Community Regular
pricklypear1971
Posted

Non Celiac Gluten Intolerance.

scaredblossom Rookie
scaredblossom
Posted
  • Author

OH lol

Pauliewog Contributor
Pauliewog
Posted

I also tested negative for Celiac. I had the genetic test as well. Twice I did a gluten challenge (eating gluten after being off of it). Both times I spent 12 hours vomiting. The doc and I settle on non-Celiac gluten intolerance. Like you, I had so many symptoms and problems. Being gluten free I feel so much better. I am not willing to give up another day to vomiting so I am very strict about staying gluten-free!

scaredblossom Rookie
scaredblossom
Posted
  • Author

I also tested negative for Celiac. I had the genetic test as well. Twice I did a gluten challenge (eating gluten after being off of it). Both times I spent 12 hours vomiting. The doc and I settle on non-Celiac gluten intolerance. Like you, I had so many symptoms and problems. Being gluten free I feel so much better. I am not willing to give up another day to vomiting so I am very strict about staying gluten-free!

I assume I'm going to have to settle on non-Celiac gluten intolerance, it's very upsetting in a way to not have a diagnosis!! :( I have had such a hard time dealing with people thinking it's all in my head and it just seems that it will have to stay that way! I just wonder if I should try a challenge to see if it still makes me sick...I'm scared though, I honestly don't think I can handle being sick again!! This is just so darn depressing!! Sorry!! :(

MitziG Enthusiast
MitziG
Posted

I understand wanting a celiac dx as reassurance that you aren't "imagining" your symptoms. The reality is, most people who are gluten intolerant are NOT celiac. More and more doctors are starting to recognize gluten intolerance as a real issue however. If you feel better off gluten, then that is how you should eat, and it is really nobody else's business.

As for lupus, yes, you should be tested, just to rule it out. And don't be surprised if your dr thinks you are an over-reacting hypochondriac. That is par for the course it seems.

EdwardHupp Newbie
EdwardHupp
Posted

I have been the same way for years. I tested negative 2 years ago I stacked to gluten free and feel much better all symptoms going away. I have heard of a lot of negative results, best thing to do try gluten free diet for 6 months it doesn't hurt to be gluten free. My girlfriend also is negative but enjoys gluten free which has helped with any stomach issues prior.

UKGail Rookie
UKGail
Posted

Having had a negative celiac blood test and endoscopy a couple of years ago, my GP sent me to a rheumatologist specialising in lupus thinking that I had another autoimmune disease. After lots more blood tests,including repeat celiac panel, it came back to looking at a gluten sensitivity again for lack of other plausible alternatives. Trialling a gluten free diet put my problems into a fast reverse. These included a photosenstive rash on my face,hives, mystery swellings etc, which took a couple of months to gradually resolve after starting the diet.

Most of my problems resolved after 6 months strictly gluten free, except for some continuing lower abdominal pain and tenderness. I am now about to have another endoscopy, following a short (2 weeks) gluten challenge. Now that length of challenge may not be sufficient to formally confirm celiac, but that and a colonoscopy will at least rule out any other co-existing conditions. The challenge has proved to me that gluten is indeed the enemy, as is dairy (at least for now), irrespective of the formal outcome of the endoscopy. I felt far too ill to contemplate a gluten challenge before now. I could only focus on getting better via the gluten free diet. And 2 weeks on gluten is all really I can take. A full 3 month challenge is quite out of the question. This will therefore be the final stage of my journey to "diagnosis".

scaredblossom Rookie
scaredblossom
Posted
  • Author

Having had a negative celiac blood test and endoscopy a couple of years ago, my GP sent me to a rheumatologist specialising in lupus thinking that I had another autoimmune disease. After lots more blood tests,including repeat celiac panel, it came back to looking at a gluten sensitivity again for lack of other plausible alternatives. Trialling a gluten free diet put my problems into a fast reverse. These included a photosenstive rash on my face,hives, mystery swellings etc, which took a couple of months to gradually resolve after starting the diet.

Most of my problems resolved after 6 months strictly gluten free, except for some continuing lower abdominal pain and tenderness. I am now about to have another endoscopy, following a short (2 weeks) gluten challenge. Now that length of challenge may not be sufficient to formally confirm celiac, but that and a colonoscopy will at least rule out any other co-existing conditions. The challenge has proved to me that gluten is indeed the enemy, as is dairy (at least for now), irrespective of the formal outcome of the endoscopy. I felt far too ill to contemplate a gluten challenge before now. I could only focus on getting better via the gluten free diet. And 2 weeks on gluten is all really I can take. A full 3 month challenge is quite out of the question. This will therefore be the final stage of my journey to "diagnosis".

Thanks, I think the gluten free diet really is helping and i feel much better!!

sandsurfgirl Collaborator
sandsurfgirl
Posted

But you have your diagnosis!! Gluten free has made a big difference for you. If you don't have a problem with gluten then you won't feel any different. My DH eats gluten free at home and eats gluten when he is out and at work. He doesn't notice a difference either way because he has no problems with it.

You need actual copies of all tests. I personally know people (and have seen it here on this board) who were told they didn't have celiac because the docs didn't know how to interpret the tests.

Any positive, even a slight one points to celiac.

The tests are so unreliable I think it will be years before we truly know if all the Non Celiac Gluten Intolerance people are really celiacs for whom the tests failed. They aren't sensitive enough and maybe there are other markers that haven't been discovered yet. Or like Enterolab, he has his own markers but he hasn't been accepted by the larger medical community.

For your sanity, if you choose to stay gluten free, which I 100% recommend, and very strict I might add... do NOT tell people about your diagnosis debacle. Tell them you have celiac and it was a blood test. You don't need the hassle of proving yourself to ignorant people or the emotional pain of them not believing you. Make your life easier. They won't know the difference and when it comes down to it, it's YOUR body and your business, not theirs.

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