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Tests Are Negative

possiblyglutensensitive

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possiblyglutensensitive Explorer
possiblyglutensensitive
Posted

I called my doctor and received the news:

anti gliadin (which I didn't know she tested for) is NEGATIVE

tTG (anti transglutaminase) is NEGATIVE

I don't get it. why is my nausea gone and neck and shoulder pain so much improved?

Am I crazy?

could the tests be wrong? Is it that there are many proteins in the "gluten" family and gliadin is just one of them and in fact I very well COULD be gluten intolerant, at the very least (even if not celiac)?

Does that result mean I can relax and not be so worried about cross contamination if I eat out? I'm going on a trip and have been really worried about the food at the hotel. Should I stop worrying about it?

Should I stay gluten free? What should i tell my family and friends???

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mushroom Proficient
mushroom
Posted

I would think it means you are non-celiac gluten intolerant. Here is some reading for you:

https://www.celiac.com/articles/1101/1/Gluten-Sensitivity-A-Gastroenterologists-Personal-Journey-Down-the-Gluten-Rabbit-Hole-by-Dr-Scot-Lewey/Page1.html

Open Original Shared Link

ravenwoodglass Mentor
ravenwoodglass
Posted

If your feeling better gluten free then it is because you need to be gluten free. Whether you are celiac or gluten intolerant you need to be just as strict. My tests were all negative also and many doctors went by those results as I get sicker and sicker. Because of false negative tests and doctors taking the tests as proof positive my diagnosis was delayed for many many years. Go by what your gut is literally telling you.

cassP Contributor
cassP
Posted

nonceliac gluten intolerance sounds about right.

also- from what ive read-> wheat has more different protein chains than the human body- that is INSANE- no wonder we cant digest it. and yes, gliadin is only one of them- but i think scientists have determined that this one is the most problematic. but there's also Wheat Germ Agglutin- which aggravates the digestive tract as well, and in particular aggravates Grave's antibodies. WGA can also trigger celiac, lead to Barrett's Esophagus, and speed up prostate cancer.

also- a light bulb went off when you said "nausea & shoulder neck pain"- both of these are signals of a congested gall bladder. and gall bladder issues are ALSO common in people with Gluten Intolerance. of course other things can cause gall bladder issues- but i have done liver flushes before and purged hundreds of gall stones... and my mother currently is having gall bladder flair ups. i keep reminding her how much gluten can lead to this.. but i dont think she's ready to give it up. i also got her to buy a tincture which ive taken before too for the gall bladder (gold coin grass). i got it at www.sensiblehealth.com

hope you come to your own conclusions and feel better!

:)

Marz Enthusiast
Marz
Posted

Hello and welcome :)

I'd say stay on the diet and see how it goes. Do try to stay away from CC as much as you can. What you can do after a few weeks if you're still not sure, is do a gluten challenge - eat plain wheat 3 times a day for a week or two. If the symptoms come back with a vengence (or new ones, like fatigue, d, pain, depression etc), you're gluten-intolerant :)

There are many symptoms of gluten-intolerance, nausea is definitely one of them (I had constant nausea/nausea after eating, went away after going gluten-free). So is joint pain (flares up whenever I get CC'd).

If you read around on these forums, lots of people had negative tests, and found major relief from their symptoms going gluten-free. The "celiac" condition is the very tip of the iceberg of gluten intolerance, and is a highly specific reaction to only 1 type of wheat protein in the gut. Dermatitis Herpetiformis is another specific reaction to gluten in the skin. Other people suffer from mainly neurological damage. Medical science has only developed a handful of blood tests, to the most common reactions, but I'm sure there's still many reactions they haven't discovered yet and are passing through the current blood test panel. That's just my take on the problem :)

Good luck with travelling and staying gluten-free!

possiblyglutensensitive Explorer
possiblyglutensensitive
Posted
  • Author

I have decided to stay gluten-free even with negative test results.

I feel this is the best thing for me.

I have contacted the hotel where I will be staying and they will accomodate gluten-free for me. So people can be really understanding!

Jill0711 Rookie
Jill0711
Posted

I just wanted to add my two cents :) I have been recently diagnosed via biopsy. My bloodwork was negative, but the biopsy was positive. I'm living proof that you can have negative bloodwork, but still have Celiac Disease. There is a percentage of people who will always have negative bloodwork even with active Celiac. Like others have said, if you are feeling better then go with that regardless of the testing.

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ravenwoodglass Mentor
ravenwoodglass
Posted

Hello and welcome :)

I'd say stay on the diet and see how it goes. Do try to stay away from CC as much as you can. What you can do after a few weeks if you're still not sure, is do a gluten challenge - eat plain wheat 3 times a day for a week or two. If the symptoms come back with a vengence (or new ones, like fatigue, d, pain, depression etc), you're gluten-intolerant :)

There are many symptoms of gluten-intolerance, nausea is definitely one of them (I had constant nausea/nausea after eating, went away after going gluten-free). So is joint pain (flares up whenever I get CC'd).

If you read around on these forums, lots of people had negative tests, and found major relief from their symptoms going gluten-free. The "celiac" condition is the very tip of the iceberg of gluten intolerance, and is a highly specific reaction to only 1 type of wheat protein in the gut. Dermatitis Herpetiformis is another specific reaction to gluten in the skin. Other people suffer from mainly neurological damage. Medical science has only developed a handful of blood tests, to the most common reactions, but I'm sure there's still many reactions they haven't discovered yet and are passing through the current blood test panel. That's just my take on the problem :)

Good luck with travelling and staying gluten-free!

Off Topic but Marz that is the cutest kitten picture I have seen in a long time.

HMReiss Newbie
HMReiss
Posted

I have had a rough two years, I had 1/4 of my lung removed because of a tumor, all my hair fell out, severe tendonitis, nausea, anemia, B12 deficient..... My friend suggested two months ago that I was celiac and all my symptoms (including life long bipolar) matched so I went gluten free. Within a week my eyebrow started coming back, bipolar gone and I felt 100 times better. My army of doctors were skeptical but I insisted we test. My blood work came back negative, but I had a speckled ANA so they suggested Lupus. I insisted on an endoscopy, sure enough I have extreme celiac, that is now showing some improvement after being gluten-free for 2 months. I am going to get another endoscopy in 6 months and a bone density test to see how bad it is.

You may not be celiac but if you feel better go with it. I learned something along the way when people wouldn't believe that I was sick or a doctor would dismiss me. You are the only one who can judge how you feel, doctors treat symptoms not patients. Good luck!

IrishHeart Veteran
IrishHeart
Posted

I have decided to stay gluten-free even with negative test results.

I feel this is the best thing for me.

I have contacted the hotel where I will be staying and they will accomodate gluten-free for me. So people can be really understanding!

I tested NEG, too..but remained very sick and in pain for years. Go with your instincts! Tests can be wrong/inaccurate (even my PC doctor said this! Imagine that.) LOL

Yes, people are much more savvy about food sensitivities now and will often accomodate those of us who need it. One chef came out to meet me because his son has a severe allergy to peanuts and he assured me he would be very careful preparing my gluten-free, soy-free, dairy-free dinner. I was so touched by his kindness, I gave him a hug. :)

cassP Contributor
cassP
Posted

I have had a rough two years, I had 1/4 of my lung removed because of a tumor, all my hair fell out, severe tendonitis, nausea, anemia, B12 deficient..... My friend suggested two months ago that I was celiac and all my symptoms (including life long bipolar) matched so I went gluten free. Within a week my eyebrow started coming back, bipolar gone and I felt 100 times better. My army of doctors were skeptical but I insisted we test. My blood work came back negative, but I had a speckled ANA so they suggested Lupus. I insisted on an endoscopy, sure enough I have extreme celiac, that is now showing some improvement after being gluten-free for 2 months. I am going to get another endoscopy in 6 months and a bone density test to see how bad it is.

You may not be celiac but if you feel better go with it. I learned something along the way when people wouldn't believe that I was sick or a doctor would dismiss me. You are the only one who can judge how you feel, doctors treat symptoms not patients. Good luck!

GOOD for u for being so persistent!!!!! i dont know why it has to be such a battle sometimes- but we really to have to be our own advocate!!!! happy you stood up for yourself, and hope you're feeling better and better

IrishHeart Veteran
IrishHeart
Posted

GOOD for u for being so persistent!!!!! i dont know why it has to be such a battle sometimes- but we really to have to be our own advocate!!!! happy you stood up for yourself, and hope you're feeling better and better

Amen,sister!!

If I were not my own best advocate, I think I'd either be in a wheelchair or mental health ward by now. Seriously, it was that bad.

ravenwoodglass Mentor
ravenwoodglass
Posted

I have had a rough two years, I had 1/4 of my lung removed because of a tumor, all my hair fell out, severe tendonitis, nausea, anemia, B12 deficient..... My friend suggested two months ago that I was celiac and all my symptoms (including life long bipolar) matched so I went gluten free. Within a week my eyebrow started coming back, bipolar gone and I felt 100 times better. My army of doctors were skeptical but I insisted we test. My blood work came back negative, but I had a speckled ANA so they suggested Lupus. I insisted on an endoscopy, sure enough I have extreme celiac, that is now showing some improvement after being gluten-free for 2 months. I am going to get another endoscopy in 6 months and a bone density test to see how bad it is.

You may not be celiac but if you feel better go with it. I learned something along the way when people wouldn't believe that I was sick or a doctor would dismiss me. You are the only one who can judge how you feel, doctors treat symptoms not patients. Good luck!

Welcome to the board. Glad your feeling better. It can be amazing how much the diet can help and how few doctors know how often the tests are a false negative. It's wonderful to hear you are getting your health back.

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    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
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