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

I'm Not Celiac...

khyricat

Recommended Posts

khyricat Rookie
khyricat
Posted

The blood tests came back "negative" now she said soemthing about less then 20 which meant negative is this true? I need to look up the testing results others posted. I was actually hoping it was this, because otherwise I am still undiagnosed. I know my bumps and stuff aren't as bad as the pics I've seen of DH- they are just itchy bumps and only get red when scratched too long... and I try hard not to scratch, but they are spreading and my tummy problems are gettign worse and they still kee telling me its just IBS. the drugs don't worka dn they have reversed the original diagnosis of Crohns because they say the test was read wrong and I didn't hae any scarring or ulcerations when they looked back at it... any suggestions would be welcome at this point.

I am pretty sure its food based, but I can't figure out WHAT FOOD! I have another appt on the 5th of August (she finally called me back with test results for the celiac test almost a month later, but won't move the other appt up) and I am going to ak her about sending me for an enterolab screening and getting insurance to cover it... because I can't help but wonder if it will make a BIG difference if we do it!

Does anyone else know fo ailments that do similar things- lassitude, diahrea and constipation both, fatty stools, basically I found like 40 yesses on the list of symptoms for celiacs.. that helped me hope it was that!

would going on a gluten free diet anyway maybe help if the celiac blood panel was negative?

Amie in MI

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

Celiac.com Sponsor (A8-M):


taneil Apprentice
taneil
Posted

The blood tests could be negative and you still have celiac disease and/or DH. Go with Entrolab, because there results are more sensative than blood tests.

Guest jhmom
Guest jhmom
Posted

Hi Amie:

I am sorry you are having such problems getting a diagnosis. There are many of us here that know exactly what you are going through. I went through so many procedures (colonoscopy,etc) only to be told I had a severe case of IBS, well I knew better and I would not accept it! I also leanred that doctors are not very educated on this disease and only see things in black in white, they want to see positive results, they want to see someone skinny, they want to see damamged villi etc...and if they don't they thinks its IBS. Of course in their defense it does take time for a disease to show up in the blood, but time was something I didn't have, I had already suffered for over a year. I took the enterolab route (along with my 8 yr old daughter) and our results were positive, we began the gluten-free diet and could tell a difference within a couple of days.

I think if your blood test come back negative that you should either be tested through Open Original Shared Link or try the gluten-free diet for a couple of months.

Good luck to you, I hope you get some answers soon! :D

khyricat Rookie
khyricat
Posted
  • Author

Thanks- mom says she thinks the doc is laughable because they are ruling things out without proper testing in her mind- she has crohns and I didn't have any new physical tests- just bloodwork, but they are saying because I didn't have physical signs of crohns 3 years ago I don't have it now... even though my SED levels are high, AND she says I sound like her friend michelle who has celiacs and went misdiagnosed for 10 years.

I think once I am back on 2 feet after Fri's wisdom teeth removal (no time to shop for things between now and then) I am going to go gluten free... I may be in the interim, I think most of the stuff I have to eat is safe, but I didn't doublecheck the spices I used in the low tomato mild chili I made myself after overcooking beans and some other things like that....

I am goign to call the doc this afternoon- she only mentioned 2 things being normal in my celiac panel but I thought they had 4, so I'm going to have a serious talk with her and ask to see the actual results- fax or email, since I don't want to wait until the appt on 8/5...

And I am going to seriously research other docs.. but I hate the idea of traveling out of the COUNTY to see one- this practice is the only one in the county, although tehre are multiple docs there, maybe I'll switch but she's the second one I've seen in the office.

Amie

GEF Explorer
GEF
Posted

Wow, Aug is a long time to wait for an appointment. You know your body best sometimes and when it's telling you that something is wrong, something is probably wrong. I hope you feel better soon and that you get your answers.

Gretchen

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. Wheatwacked
      - Wheatwacked replied to GlutenFreeChef's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      12

      Blood Test for Celiac wheat type matters?

      no argument. Never take the pills sold for Nuclear events, except in a nuclear event when instructed to by authorities. Some of these go up to 130 milligrams per pill. 5000 times the strength of the dietary supplement. 130 times the safe upper limit. 130 mg = 130,000 mcg. Dietary supplements like Lugol's Solution and Liquid Iodine are 50 micrograms...
    2. 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...
    3. 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...
    4. 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.
    5. 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...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,142
    • Most Online (within 30 mins)
      7,748
    Mark Conway
    Newest Member
    Mark Conway
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

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

  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • Wheatwacked
      Blood Test for Celiac wheat type matters?

      By Wheatwacked · Posted

      no argument. Never take the pills sold for Nuclear events, except in a nuclear event when instructed to by authorities.  Some of these go up to 130 milligrams per pill. 5000 times the strength of the dietary supplement.  130 times the safe upper limit.  130 mg = 130,000 mcg. Dietary supplements like Lugol's Solution and Liquid Iodine are 50 micrograms per drop.  It takes 20 drops to reach the safe upper limit. In the US the Safe upper limit is 1100 mcg.  In Europe 600 mcg and in Japan 3000 mcg ( 3 mg).
    • 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.
×
×
  • 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.