Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Tests Are Negative

possiblyglutensensitive

Recommended Posts

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???

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      128,181
    • Most Online (within 30 mins)
      7,748
    ViRose
    Newest Member
    ViRose
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.7k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Wheatwacked
      Testing

      By Wheatwacked · Posted

      Once you have removed the inflammatories, it is time to focus on the deficiencies.  A lot of them not specific to Celiac, but deficiency in them elicits symptoms associated with Celiac. According to research, celiac disease tends to be more prevalent in urban areas compared to rural areas.  Same is true with airborne viruses.  Because urban residents get less sunlight.  To top it off we use lotion and gear to block the little light there is.  This compremises the vitamin D blood level.  A virus attack further lowers vitamin D and the immune system loses control over the Celiac genes and they go into acute symptoms. 40% to 75% depending depending on country are vitamin D deficient. 50% do not eat the Adequit Intake for potassium (4700 mg a day) 90% do n ot eat the Adequit Intake for Choline. Iodine intake since 1970 had dropped 50%.  The western diet is typically excessive in omega 6 fatty acid compared to omega 3.  Above 14:1 by some estimates.  So they sell us expensive, processed oils to compensate.  Anyway after 10 years gluten free myself,  here is what has helped me in just the past few years; once I realized I was at a healing plateau and just GFD would not cut it, and reallized my deficiencies.  Most recently, I started a statin which I only took for two weeks before it started to cripple me.   Got a prescription for Nicotinic Acid to 2000 and am more flexible now Plus HDL went 29 to 44, eGFR from 55 to 79. I also learned if the pharmacist gets a prescription for Niacin that it is dealer's choice whether you get Nicotinic Acid or Niacinimide.  And it comes out of a regular vitamin manufacturer.   "likely deficiencies and what I take to boost my intake (I get anorexic at the drop of a hat so I take them to keep me stable):  the ones that helped me the most noticibly Was increasing vitamin D blood level to 80 ng/ml and Iodine to 500 mcg once or twice a day, Thiamine, Choline, and Iodine. 10,000 IU vitamin D 500 mg Thiamine or more Choline Iodine – 600 to 1200 mcg of Liquid Iodine Vitamin B2 helps break down proteins, fats, and carbohydrates. It plays a vital role in maintaining the body's energy supply.  500 mg Nicotinic Acid - increase capillary blood flow, lower cholesterol. I recently started 2000 mg a day instead of a statin which I cannot tolerate. I the first month my HDL went from 29 to 44. eGFR (kidney function) jumped from 55 ti 75. It also has make my whole body less stiff. The ichy, flushing with the first few doses goes away. The non flush forms of vitamin B3 do not work. It is the relaxing of the capillaries and tendons. 500 mg Pantothenic Acid vitamin B5 Omega-3 and Omega-6 Fatty Acids in Vegetables  Eating more of the vegetables low in omega six and high omega 3 can reduce inflammation Whole Milk Vanilla yogurt to which I add 100 grams of raspberrys, black berries and blueberries has lots of probiotics and makes my tummy and body happy. Red Bull has sugar (not high fructose corn syrup) and the vitamins (B2,3,5,6 need to metabolize to ATP energy and Taurine as an antioxident). It is a good source of energy for me because my genetic hyperlipidemia does not process complex carbs well.        
    • trents
      For people with celiac disease and corn intolerance from it: Is salt still okay for most people?

      By trents · Posted

      Gluten-like cross reactions to other foods are from the proteins that make them up. Dextrose is the sugar component found in corn.
    • Ryangf
      For people with celiac disease and corn intolerance from it: Is salt still okay for most people?

      By Ryangf · Posted

      I just found out a few days ago that some salt like table salt contains dextrose that’s derived from corn. I’ve been thinking about getting rid of using table salt and just using my own kosher or Himalayan salt, but tbh I’m reluctant to do it. I’ve cut out a lot of things and I don’t really want to cut out anything else that I’m not sure will effect me…in a super small amount that it might be added to salts to stabilize the iodine. I don’t want to be further alienated when I have to go to a restaurant with my friends. Also most of the items at my house that have salt in it canned food etc. are some of the few quick things I can eat- because I’m not the one paying for the food in my household and i can only ask for so much. I’m not in a place financially where I can get a lot of my specialized items- although my family tries their best to get items I Can actually stand. I get I can bring a my own salt with me at a restaurant and ask for no seasoning but it feels like a lot to me- cause I already check for cross contamination and ask if the food has like a high volume of corn in it like cornstarch etc. I’ve also heard most dextrose is not derived from the Zein (corn gluten) portion of it- so it might be safe- but idk if that’s true. I just wanna know if anyone actually responded to it negatively.
    • Scott Adams
      I’m so confused…

      By Scott Adams · Posted

      For my first couple of years after discovering my celiac disease I also had to avoid cow's milk/casein and eggs, as well as other things, but could tolerate duck eggs and sheep and goat's milk products. I'm not sure if you've tried those, but it could be worth testing them out.
    • knitty kitty
      I’m so confused…

      By knitty kitty · Posted

      Hello, @Kwinkle, How are you doing?   Have you tried adding a Magnesium supplement?   The B Complex vitamins need magnesium to work properly, especially thiamine vitamin B 1.   Magnesium deficiency symptoms and Thiamine deficiency symptoms both include gas and bloating.  Thiamine deficiency symptoms also include loss of appetite and fatigue.   My gas and bloating resolved rather quickly when I took Benfotiamine (a form of thiamine shown to promote intestinal healing) and Magnesium Glycinate in addition to my B 50 Complex (all twice a day plus the following...).   I found Magnesium L-Threonate or Magnesium Taurate are better when taken with a form of thiamine called TTFD (Tetrahydrofurfuryl dusulfide) because all of these cross the blood brain barrier easily, which corrects the loss of appetite, fatigue and anxiety.    Like @Celiacandme said, keeping a food/mood/poo'd journal is a big help in finding problematic foods, and for making sure your diet is not carbohydrate heavy.  If you're eating a lot if processed gluten free facsimile foods, be aware they do not have vitamins and minerals added to them like their gluten containing counterparts.  For every 1000 kcal of carbohydrates, we need an extra 500 mg of thiamine to turn them into energy and not store them as fat.   Let us know how you're doing!
×
×
  • Create New...