Get email alerts Get E-mail Alerts Sponsor: Sponsor:

Ads by Google:

   Get email alerts  Subscribe to FREE email alerts

I'm Not Celiac...

5 posts in this topic

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


Share this post

Link to post
Share on other sites

Ads by Google:

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.


Share this post

Link to post
Share on other sites

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 Enterolab or try the gluten-free diet for a couple of months.

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


Share this post

Link to post
Share on other sites

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.



Share this post

Link to post
Share on other sites

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.



Share this post

Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

  • Forum Statistics

    • Total Topics
    • Total Posts
  • Topics

  • Posts

    • Weird things people have said
      I've had people say strange things about celiac to me lately... Like someone said, "Oh I'm just a mild celiac so I don't have to worry about cross-contamination." And then someone else said that they're celiac but things have calmed down now so they can have a bit of gluten here and there. And I told my doctor that back in 2014 I thought I had been gluten free but I actually wasn't because I had been repeatedly glutening myself with an old colander. And he just looked at me like I was insane, like a colander?? Sure... I'm not crazy, right? Even if you have no symptoms you have to avoid cross-contamination because you can be doing damage internally right? You can never have 'just a bit'. And a colander is a big source of cross-contamination right?? I know all this but why do these other people not? Why does my doctor not know? So confusing and spreading misinformation... And then they look at me like *I'M* crazy.
    • fructose malabsorption and gluten intolerant
      Look up FODMAPS.   That might clarify things for you.  There really are a lot of diet recommendations so make sure you bring a list of questions regarding foods to your doctor's  and dietician's appointments.  
    • Recovery?
      Thank you for sharing those web sites. I will look at them. We have been gluten free since December so it's been a while. Once, he had a gluten free beer, the kind that they take the gluten out, and his legs felt very heavy and had a more difficult time walking. I really don't want to experiment.  Although I am very careful about what we eat, I am concerned that some of our medication could contain gluten. Is there any easier way to tell if medication has gluten. I did find a website which listed drugs and known gluten but every drug was on it or was determined to be gluten free
    • fructose malabsorption and gluten intolerant
      I don't have celiac but doctors or amazed I don't so they told me to fallow the gluten-free diet like I have it... any way I was wondering if one can have corn, corn starch if they have fructose malabsorption. I am so confused on what I can and can't have.. i have an appt next week hopefully with a dietitian... also can you have sugar free stuff since it's not sugar.. I'm reading online and I'm getting a bunch of mixed info on both. 
    • Depression / anxiety issues
      Hi all.  Still feeling the same way this past week. I'm thinking of dropping dairy starting from today, I don't know if I have a problem with it or not, but I drink 2 coffees a day with milk. I'm just constantly tired all the time, and getting trough the day is pretty hard, I noticed a couple of weeks ago that my sleep was improving but the last couple of days I have been waking up at least 3 times during the night, then when I get up in the morning it feels like I have been hit by a bus, like I haven't slept at all. I keep waking up during the night needing to drink water as I feel dehydrated, I don't know why as I drink 2-3 litres of water everyday 
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • Jmg  »  admin

      Hello Admin!
      I don't know whether this is of interest to post on your articles feed:
      Kind Regards,
      · 2 replies
    • celiac sharon  »  cyclinglady

      Hello cycling lady, have you noticed my picture is showing up as you?  Have no idea why but it's rather disconcerting to see my picture and your words 😉  Do you know how to fix it?  You seem to have far more experience with this board than I do
      · 1 reply
    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it. Thank You,
      · 2 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
    • Most Online

    Newest Member