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. trents
      - trents replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Seeking advice on potential gluten challenge

      Welcome to the celiac.com community, @JudyLou! There are a couple of things you might consider to help you in your decision that would not require you to do a gluten challenge. The first, that is if you have not had this test run already, is to request a "total IGA" test to be run. One of the reasons that celiac blood antibody tests can be negative...
    2. JudyLou
      - JudyLou posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Seeking advice on potential gluten challenge

      Hi there, I’m debating whether to consider a gluten challenge and I’m hoping someone here can help with that decision (so far, none of the doctors have been helpful). I have a history of breaking out in a horrible, burning/itchy somewhat blistering rash about every 8 years. This started when I was in my early 30’s and at that point it started at the ankle...
    3. marzian
      - marzian commented on Scott Adams's article in Diagnosis, Testing & Treatment
      5

      A Future Beyond the Gluten-Free Diet? Scientists Test a New Cell Therapy for Celiac Disease (+Video)

      This is very exciting news. The research lends itself to preventing the immune system in other autoimmune disorders from getting out of sorts. As someone with a compendium of autoimmune disorders I feel a bit of hope.
    4. Jmartes71
      - Jmartes71 posted a topic in Related Issues & Disorders
      0

      Medications

      Hello, just popped in my head to ask this question about medications and celiac? I have always had refurse reaction to meds since I can remember of what little meds my body is able to tolerate. I was taking gabapentin 300mg for a week, in past I believe 150? Any ways it amps me up not able to sleep, though very tired.However I did notice it helped with...
    5. Scott Adams
      - Scott Adams replied to GlutenFreeChef's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Blood Test for Celiac wheat type matters?

      I'm not saying that some celiacs won't need it, but it should be done under a doctor's supervision because it can cause lots of problems in some people.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,139
    • Most Online (within 30 mins)
      7,748
    kathleen apodaca
    Newest Member
    kathleen apodaca
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • trents
      Seeking advice on potential gluten challenge

      By trents · Posted

      Welcome to the celiac.com community, @JudyLou! There are a couple of things you might consider to help you in your decision that would not require you to do a gluten challenge. The first, that is if you have not had this test run already, is to request a "total IGA" test to be run. One of the reasons that celiac blood antibody tests can be negative, apart from not having celiac disease, that is, is because of IGA deficiency. If a person is IGA deficient, they will not respond accurately to the celiac disease blood antibody tests (such as the commonly run TTG-IGA). The total IGA test is designed to check for IGA deficiency. The total IGA test is not a celiac antibody test so I wouldn't think that a gluten challenge is necessary. The second is to have genetic testing done to determine if you have the genetic potential to develop celiac disease. About 30-40% of  the general population have the genetic potential but only about 1% actually develop celiac disease. So, genetic testing cannot be used to diagnose celiac disease but it can be used to rule it out. Those who don't have the genetic potential but still have reaction to gluten would not be diagnosed with celiac disease but with NCGS (Non Celiac Gluten Sensitivity).  Another possibility is that you do have celiac disease but are in remission. We do see this but often it doesn't last.
    • JudyLou
      Seeking advice on potential gluten challenge

      By JudyLou · Posted

      Hi there, I’m debating whether to consider a gluten challenge and I’m hoping someone here can help with that decision (so far, none of the doctors have been helpful). I have a history of breaking out in a horrible, burning/itchy somewhat blistering rash about every 8 years. This started when I was in my early 30’s and at that point it started at the ankles and went about to my knees. Every time I had the rash it would cover more of my body, so my arms and part of my torso were impacted as well, and it was always symmetrical. First I was told it was an allergic reaction to a bug bite. Next I was told it was eczema (after a biopsy of the lesion - not the skin near the lesion) and given a steroid injection (didn’t help). I took myself off of gluten about 3 weeks before seeing an allergist, just to see if it would help (it didn’t in that time period). He thought the rash looked like dermatitis herpetiformis and told me to eat some bread the night before my blood tests, which I did, and the tests came back negative. I’ve since learned from this forum that I needed to be eating gluten daily for at least a month in order to get an accurate test result. I’m grateful to the allergist as he found that 5 mg of doxepin daily will eliminate the rash within about 10 days (previously it lasted for months whether I was eating gluten or not). I have been gluten free for about 25 years as a precaution and recommendation from my doctor, and the pattern of breaking out every 8 years or so remains the same except once I broke out after just one year (was not glutened as far as I know), and now it’s been over 9 years. What’s confusing to me, is that there have been 3 times in the past 2 years when I’ve accidentally eaten gluten, and I haven’t had any reaction at all. Once someone made pancakes (they said they were gluten-free, they were not) and I ate several. I need to decide whether to do a gluten challenge and get another blood test. If I do, are these tests really accurate? I’m also concerned that I could damage my gut in that process if I do have celiac disease. My brother and cousin both had lymphoma so that’s a concern regarding a challenge as well, though there is a lot of cancer in various forms in my family so there may be no gluten connection there. Sorry for the ramble, I’m just doubting the need to remain gluten free if I don’t have any reaction to eating it and haven’t had a positive test (other than testing positive for one of the genes, though it sounds like that’s pretty common). I’d appreciate any thoughts or advice! 
    • Jmartes71
      Medications

      By Jmartes71 · Posted

      Hello, just popped in my head to ask this question about medications and celiac? I have always had refurse reaction to meds since I can remember  of what little meds my body is able to tolerate. I was taking gabapentin 300mg for a week,  in past I believe 150? Any ways it amps me up not able to sleep, though very tired.However I did notice it helped with my bloating sibo belly.I hate that my body is that sensitive and medical doesn't seem to take seriously. Im STILL healing with my skin, eye, and now ms or meningioma ( will know in April  which)and dealing with this limbo nightmare. I did write my name, address ect on the reclamation but im not tech savvy and not sure if went through properly. I called my city representative in Stanislaus County and asked if theres a physical paper i can sign for proclamation for celiac and she had no clue about what I was saying, so I just said I'll go back on website. 
    • Scott Adams
      Blood Test for Celiac wheat type matters?

      By Scott Adams · Posted

      I'm not saying that some celiacs won't need it, but it should be done under a doctor's supervision because it can cause lots of problems in some people.
    • Jmartes71
      Airborne Gluten?

      By Jmartes71 · Posted

      I also noticed I get debilitating migraines when I smell gluten, wheat and its not taken seriously when it affects one in every way.Im still begging to properly be heard.I also noticed tolerance level is down the drain with age and life changes. I have been told by incompetent medical that im not celiac or that sensitive. Diagnosed in 1994 by gi biopsy gluten-free ever since along with other lovely food allergies. Prayers
×
×
  • 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.