Jump to content

  • 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

Tested Negative For Celiac

Mo92109

Recommended Posts

Mo92109 Apprentice
Mo92109
Posted

About 3 years ago, a Dr took blood and said I had an intorerace to wheat. After that, I had that horrible celiac test done, and it was negative. Well, I went on eating what I wanted and dealt with the D and all that. Eventually, I was getting so, so bad, that I decided to go gluten-free on my own. I started to feel great, for awhile. I did start to notice allergy symptoms - like itching and sneezing if I was gluttoned by accident.

Anyway, my stomach was bloated to the point I was getting mistaken for being pregnant (I am pretty thin otherwise) and I was having occsional stomach pain, even though I was very strict with my food.

So I go see a specialist. I get a blood test since he is positive I developed celiac, but, alas, that is negative too. I am happy and sad. Now what? ANYone been through this or have any ideas what I should do now? I am going to see a dietitian soon, but I don't know what that's gonna do since I don't know what food exactly to stay away from.

Has anyone ever looked into holistic healing? I'm usually a skeptic, but mainstream medicine is getting on my nerves. This is so slow and no one knows what's wrong with me.

I thought maybe I'd go on a gluten challege of some sort and keep a diary of what I eat and how I feel after, but am kind of scared from the allergy perspective. I just ate a teensy bit now and my nose is itching really bad...

Thanks for any feedback/suggestions/stories, anything...

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted
About 3 years ago, a Dr took blood and said I had an intorerace to wheat. After that, I had that horrible celiac test done, and it was negative. Well, I went on eating what I wanted and dealt with the D and all that. Eventually, I was getting so, so bad, that I decided to go gluten-free on my own. I started to feel great, for awhile. I did start to notice allergy symptoms - like itching and sneezing if I was gluttoned by accident.

Anyway, my stomach was bloated to the point I was getting mistaken for being pregnant (I am pretty thin otherwise) and I was having occsional stomach pain, even though I was very strict with my food.

So I go see a specialist. I get a blood test since he is positive I developed celiac, but, alas, that is negative too. I am happy and sad. Now what? ANYone been through this or have any ideas what I should do now? I am going to see a dietitian soon, but I don't know what that's gonna do since I don't know what food exactly to stay away from.

Has anyone ever looked into holistic healing? I'm usually a skeptic, but mainstream medicine is getting on my nerves. This is so slow and no one knows what's wrong with me.

I thought maybe I'd go on a gluten challege of some sort and keep a diary of what I eat and how I feel after, but am kind of scared from the allergy perspective. I just ate a teensy bit now and my nose is itching really bad...

Thanks for any feedback/suggestions/stories, anything...

I tested negative for years even though I was eventually so sick that I was homebound. No one ever mentioned to try the diet to see if it helps anyway. That delay in correct diagnosis caused permanent damage and effected many of my bodies systems. I reccommend everyone try the diet strictly for a month or two to see if it helps. Don't challenge until you are symptom free for at least a couple of weeks. You may also want to eliminate dairy at first. Good luck and hope you feel better soon.

GravStars Contributor
GravStars
Posted

you tested positive for a wheat intolerance, but negative for celiac? so wouldn't that mean all gluten isn't a problem, just wheat, so you definitely at the least shouldn't be eating wheat, right?

nettiebeads Apprentice
nettiebeads
Posted

I agree with Raven - since you felt better going gluten-free, then do so. Listen to your body. I was dx'd by diet challenge alone. My current gp knows I go to this site for info and support (lots of it here); I mentioned wishing I could get tested just to see what exactly I have, but he feels that the tests are far too unreliable to be considered accurate enough for correct dx. He's content enough to go with my previous gp's dx and the fact that I know my body well enough to recognize when I get glutened. I don't get the D any more - just extreme fatigue and high irritibility levels. You could try Enterolab and see what results you get there, plus the gene profiling. That's something I'm interested in - I'd like to know what I may have passed on to my dd.

Annette

Mango04 Enthusiast
Mango04
Posted

You could have non-celiac gluten intolerance. You'll be hard pressed to get that particular diagnosis from a mainstream doctor. If you know you feel better when you don't eat gluten, don't eat gluten :) Trust what your body is telling you. Don't even go on the gluten challenge if you know a teensy bit is giving you trouble...

Another possibility is your blood test could have been negative if you didn't have enough gluten in your system. Or, you could have a wheat allergy, which is different than celiac. That can be hard to test for as well...

Mo92109 Apprentice
Mo92109
Posted
  • Author

Thanks - I know I don't make sense, I just feel so lost. Sometimes I think I can't eat ANYTHING. I don't know if it's gluten, wheat or anything. I made an appointment with an allergist and am thinking about a holistic healer. I know I am forever done with "breads", but it would be nice to have light beer here and there and not be in a panic in a restaurant.

Getting rid of the giant bloated stomach would be nice too and I have had that on and off (mostly on) following a strict gluten-free diet.

tarnalberry Community Regular
tarnalberry
Posted

It may be worth trying an elimination diet to determine what the source of the problem is. Perhaps it's gluten, but perhaps it's dairy or soy. Continuing to work with doctors is a good idea too, but you have to find a doctor who's willing to work with you. Elimination diets are difficult to do, and you'll want to take some time planning one if you're going to go that route, but it may help pin down your problem.

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

Celiac.com Sponsor (A8-M):


JodiC Apprentice
JodiC
Posted

Depending where you live you could try a biofeedback machine. These will tell you what you are allergic or intolerant to. You could also contact YORK INDUSTRIES (out of New York). They do a blood test for all the major allergens. Sometimes other conditions can cause your symptoms like endometriosis. This is what finally alerted my doctor and me to start doing some more research (more me than my doctor). I ended up having a complete hystorectomy due to undiagnosed celiac disease.

loraleena Contributor
loraleena
Posted

Do the stool test from enterolabs. It will tell you at least whether you are gluten intolerant or not and I suspect you are.

Susan123 Rookie
Susan123
Posted

I was diagnosed with non-Celiac Gluten Intolerance. For the two biopsies I had both were negative but my antibody levels were elevated greatly and I had one of the genes. For me, I choose to do the Gluten-Free diet. but I also have a wheat allergy. My only symptoms is a burning in my stomach the next day and headaches that could or could not be related. My doctor said the burning in the stomach could be the allergy side of things as allergies induce excess stomach acid to be produced. Do what works for you... if it makes you feel better than do it!

Guest greengirl
Guest greengirl
Posted

A lot of people on this forum have found out they have problems with corn - the bloating continued after they were strictly gluten free.

I was still having problems after going gluten free so I'm doing the specific carbohydrate diet (from the book Breaking the Vicious Cycle by Elaine Gottschall). It's still gluten free but is designed to promote healing, and then after a time you can go back to a regular gluten free diet.

Christine

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. knitty kitty
      - knitty kitty replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      results from 13 day gluten challenge - does this mean I can't have celiac?

      @catnapt, Wheat germ contains high amounts of lectins which are really hard to digest and can be irritating to the digestive tract. They can stimulate IgG antibody production as your blood test shows. Even beans have lectins. You've simply eaten too many lectins and irritated your digestive tract. You may want to allow your digestive tract...
    2. knitty kitty
      - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      49

      My journey is it gluten or fiber?

      I take Now B-1 (100 mg) Thiamine Hydrochloride, and Amazing Formulas L-Tryptophan (1000 mg). Both are gluten free and free of other allergens. I've taken them for a long time and haven't had a problem with them. I take Vitamin A from BioTech called "A-25". It's gluten and allergen free and made in the USA. It's a powder form of Vitamin A. ...
    3. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      results from 13 day gluten challenge - does this mean I can't have celiac?

      good luck! vital wheat gluten made me violently ill. I will touch the stuff ever again.
    4. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      results from 13 day gluten challenge - does this mean I can't have celiac?

      I wouldn't consider this lucky. I can NOT tolerate the symptoms. And I googled it and I was not even getting 10 grams of gluten per day and I was extremely ill. They'd have to put me in the hospital. I'm not kidding. I will have my first appt with a GI dr on March 4th I will not eat gluten again - at least not on purpose ...
    5. xxnonamexx
      - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      49

      My journey is it gluten or fiber?

      What Thiamine Hydrochloride brand do you take? Is it like the other vitamins I have added? What brand Tryptophan and amount do you take. Thanks
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,368
    • Most Online (within 30 mins)
      7,748
    Klairep
    Newest Member
    Klairep
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • knitty kitty
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By knitty kitty · Posted

      @catnapt,  Wheat germ contains high amounts of lectins which are really hard to digest and can be irritating to the digestive tract.  They can stimulate IgG antibody production as your blood test shows.   Even beans have lectins.  You've simply eaten too many lectins and irritated your digestive tract.   You may want to allow your digestive tract to rest for a week, then start on gluten in "normal" food, not in concentrated vital wheat gluten. This explains it well: Lectins, agglutinins, and their roles in autoimmune reactivities https://pubmed.ncbi.nlm.nih.gov/25599185/
    • knitty kitty
      My journey is it gluten or fiber?

      By knitty kitty · Posted

      I take Now B-1 (100 mg) Thiamine Hydrochloride, and Amazing Formulas L-Tryptophan (1000 mg).   Both are gluten free and free of other allergens.  I've taken them for a long time and haven't had a problem with them. I take Vitamin A from BioTech called "A-25".  It's gluten and allergen free and made in the USA.  It's a powder form of Vitamin A.  I was having trouble digesting fats at one point, but found I tolerated the powder form much better and have stuck with it since.   Tryptophan and Vitamin A help heal the intestines as well as improves skin health.  I get Dermatitis Herpetiformis and eczema flairs when my stomach is upset.  So I'm healing the outside as well as the inside.   I take one 1000 mg Tryptophan before bedtime.   With the Thiamine HCl, take 100 mg to start.  If you don't notice anything, three hours later take another. You can keep increasing your dose in this manner until you do notice improvement.  Remember not to take it in the evening so it won't keep you too energized to sleep. When I first started Thiamine HCl, taking 500 mg to 1000 mg to start was recommended.  If you've been thiamine insufficient for a while, you do notice a big difference.  It's like the start of a NASCAR race: Zoom, Zoom, turn it up!   This scared or made some people uncomfortable, but it's just your body beginning to function properly, like putting new spark plugs in your engine.  I took 1000 mg all at once without food.  It kicked in beautifully, but I got a tummy ache, so take with food.  I added in Thiamine TTFD and Benfotiamine weeks later and felt like I was Formula One racing.  So cool.  You may feel worse for a couple days as your body adjusts to having sufficient thiamine.  Feels sort of like you haven't cranked your engine for a while and it backfires and sputters, but it will settle down and start purring soon enough.  Adjust your dose to what feels right for you, increasing your dose as long as you feel improvement.  You can reach a plateau, so stay there for several days, then try bumping it up again.  If no more improvements happen, you can stay at the plateau amount and experiment with increasing your Thiamine TTFD.  It's like being your own lab rat.  LoL Yes, take one Benfotiamine at breakfast and one at lunch.  Take the B Complex at breakfast. Take the TTFD at breakfast and lunch as well.  I like to take the vitamins at the beginning of meals and the NeuroMag at the end of meals.   You may want to add in some zinc.  I take Thorne Zinc 30 mg at breakfast at the beginning of the meal.   Are you getting sufficient Omega Threes?  Our brains are made up mostly of fat.  Flaxseed oil supplements, sunflower seed oil supplements (or eat the seeds themselves) can improve that.  Cooking with extra virgin olive oil, avocado oil, or coconut oil is also helpful.   @Wheatwacked likes phosphotidyl choline supplements for his Omega Threes.  He's also had dramatic health improvement by supplementing thiamine.  You're doing great!  Thank you for sharing your journey with us.  This path will smooth out.  Keep going!  
    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      good luck! vital wheat gluten made me violently ill. I will touch the stuff ever again.  
    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      I wouldn't consider this lucky. I can NOT tolerate the symptoms. And I googled it and I was not even getting 10 grams of gluten per day and I was extremely ill. They'd have to put me in the hospital. I'm not kidding.   I will have my first appt with a GI dr on March 4th   I will not eat gluten again - at least not on purpose   they are going to have to come up with a test that doesn't require it. 
    • xxnonamexx
      My journey is it gluten or fiber?

      By xxnonamexx · Posted

      What Thiamine Hydrochloride brand do you take? Is it like the other vitamins I have added? What brand Tryptophan and amount do you take. Thanks
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.