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. dixonpete
      0

      Hookworm load planner

    2. AlwaysLearning
      - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

      Get tested for vitamin deficiencies. Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
    3. Colleen H
      - Colleen H replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

      Thank you so much for your response Yes it seems as though things get very painful as time goes on. I'm not eating gluten as far as I know. However, I'm not sure of cross contamination. My system seems to weaken to hidden spices and other possibilities. ??? if cross contamination is possible...I am in a super sensitive mode of celiac disease...
    4. Jmartes71
      - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not...
    5. AlwaysLearning
      - AlwaysLearning replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does m...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,089
    • Most Online (within 30 mins)
      7,748
    Clare Durham
    Newest Member
    Clare Durham
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • AlwaysLearning
      Gluten related ??

      By AlwaysLearning · Posted

      Get tested for vitamin deficiencies.  Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
    • Colleen H
      Gluten related ??

      By Colleen H · Posted

      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      My only proof

      By AlwaysLearning · Posted

      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
    • AlwaysLearning
      Gluten related ??

      By AlwaysLearning · Posted

      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
×
×
  • 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.