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

Yay Blood Test Tomorrow!

sickchick

By sickchick
in Coping with Celiac Disease

Recommended Posts

sickchick Community Regular
sickchick
Posted

I am so happy :):):)

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

Celiac.com Sponsor (A8-M):


Guest thatchickali
Guest thatchickali
Posted

So you're having the blood test to see if you really have Celiac??

Did they make you start eating gluten again before you get it?

ravenwoodglass Mentor
ravenwoodglass
Posted

I do hope the answer to whether you are still on gluten is yes. There is a risk of a false negative even if you are consuming it on a regular basis. Please be sure if you have not already that you give the diet a good shot after all your testing is over.

Guest thatchickali
Guest thatchickali
Posted

I had a negative blood test, stool testing is the most accurate way of testing.

Lisa Mentor
Lisa
Posted
I had a negative blood test, stool testing is the most accurate way of testing.

Of testing what?

Guest thatchickali
Guest thatchickali
Posted

Stool sampling is the most accurate way at this time to test for celiac disease

Lisa Mentor
Lisa
Posted
Stool sampling is the most accurate way at this time to test for celiac disease

Ali,

There are three ways to test/diagnose for Celiac Disease.

1. Blood Test

2. Endoscopy for a Biopsy

3. Positive Dietary Response.

If you are refering to Enterolabs stool testing, yes they can test for gluten sensitivity and other sensitivities, but they cannot and do not claim to diagnose Celiac Disease.

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

Celiac.com Sponsor (A8-M):


Guest thatchickali
Guest thatchickali
Posted

I just worded it wrong, it is the best for detecting gluten intolerance/sensitivity

Lisa Mentor
Lisa
Posted
I just worded it wrong, it is the best for detecting gluten intolerance/sensitivity

maybe so, :)

sickchick Community Regular
sickchick
Posted
  • Author

Well my ND and I decided it's a good place to start. She rolled her eyes when I brought in the Dr Green book so I am hoping and yes I have been a gluten-eating maniac and I spent half of last night in the bathroom. I just don't want to drag it on any longer then necessary and if she isn't convinced I have it by the day we get the lab results back (she's testing for 5 different things) then I will take my money and go see someone else.

And if the tests are positive, then that's good enough for me :)

Thanks everyone for your support B)

Guest thatchickali
Guest thatchickali
Posted

Well it's good that you are getting the blood test, but if you can tell that eating gluten makes you sick and being off it makes you better, well I'd stay off it no matter what the blood test says. I know it would be exciting to have a definate diagnosis, but it sounds like you've found your solution!

Good luck!

JNBunnie1 Community Regular
JNBunnie1
Posted

Well if the nitwit can't even pay attention when you say you have a sensitivity to wheat, I'd can her and find someone else, even if it's a conventional doctor. My 'conventional' doctor was PROUD of me for figuring it out myself, he didn't insist on tests because he didn't want to mess up my life insurance in the future with an official diagnosis, and has referred to me as celiac since. I have the best doctor in the world though, who only ever prescribed me ANYTHING when I asked for anti nausea medication and once when I had a UTI. He didn't act like he could 'fix' me with drugs. Anyone in the Hartford Ct area is welcome to PM me and get his name!

sickchick Community Regular
sickchick
Posted
  • Author
B) Way to go JNBunnie1
gfpaperdoll Rookie
gfpaperdoll
Posted

I think MommaGoose is the anti Enterolab police of this forum - heaven forbid that anyone that does not have an actual positive biopsy think they might have celiac. We must just be a bunch of Enterolab diagnosed hypochondriacs. well maybe except for my one friend that is double DQ1 & positive biopsy & then positive thru Enterolab for gluten and dairy. Oh NO, wait, although she has a positive biopsy it must be only gluten intolerance because she does not have DQ2 or DQ8, okay maybe it is just in her head too...

But what I really think is that anyone smart enough to quit eating gluten before the villi are damaged should not care what anyone says that had to wait to get a positive biobsy before listening to what their body was telling them & then to down play the suffering of others.

NoGluGirl Contributor
NoGluGirl
Posted

Dear sickchick,

We are pulling for you! :) Let us know when the results come in! I am sure all will be anxious to hear! Meanwhile, keep in mind, the antibody tests can be negative even if you are Celiac. That is what happened to me. I could have started the diet nearly seven years ago had I had this doctor at the time!

What was worse, we spent $300 to send my blood to a special lab said to know more about Celiac than anywhere. I become violently ill from even a microscopic speck of gluten. I always had a feeling those test results were wrong. For the past year, I have seen a holistic physician, and she pointed me in the right direction. She knows with the typical history of a Celiac, and the digestive problems in my family and other conditions, that I am Celiac. I used to be anemic, I have Thyroid disease, I have had ovarian cysts, and my teeth began going bad during the last several years, where I never had problems with my teeth before.

What is frightening to me is how many doctors who are GIs had no idea about Celiac, yet claim to be experts on it. I actually had one tell me who did my colonoscopy and endoscopy in 2001 that there was no way you could poop food out whole! :rolleyes: I do not think they even knew what to look for! These people think they know everything there is to know.

Thank goodness for this forum and informed doctors!

Dear gfpaperdoll,

I know what you mean! Doctors assume because they went to medical school, they are smarter than you! :angry: Here is a question for you: "How many doctors does it take to screw in a lightbulb?" The answer is: "None! They would not know where to put it!" :lol: I had a whole team of morons in white coats telling me I was just mental after going through four horrific days of GI testing up at IU Med. That is not including all of the idiots I saw in town. Speaking of, I have some nasty letters to write!

Sincerely,

NoGluGirl

sickchick Community Regular
sickchick
Posted
  • Author

I can't say how monumentally this forum has helped me. I learn something everyday.

I am not expecting a positive or negative but I figured it was a place to start. And I am just keeping positive. I know I have Celiac I am itching all over from DH and I am achy all the way to the bone, my digestive system is a nightmare and I am hell bent on getting better. I will not give up on healing.

You know, GluGirl, I have never had one cavity and now just this last year my teeth are going. They are becoming dark and discolored and I have no shine at all. I mouthwash w/ straight hydrogen peroxide for 15 minutes twice a day. It helps a little :)

oh by the way, went to the apt and they couldn't find my lab order and they can't do any lab work without one so I am waiting for a call back so I can have it done, I am about frazzled already! ;)

sending healing and love you all of ya! B)

sickchick

NoGluGirl Contributor
NoGluGirl
Posted

Dear sickchick,

That sounds like what happened with my teeth! About two or three years ago is when I began having trouble. They just chip off little by little. :( Even worse was the fact they often did it while I was eating soft food like scrambled eggs! :o

It really makes you worry, doesn't it?

I cannot believe they misplaced your lab order! :angry: I would be fit to be tied, too! Maybe they will find it, and you can get it done. Keep us posted. Healing and love to you as well!

Sincerely,

NoGluGirl

Lisa Mentor
Lisa
Posted
I think MommaGoose is the anti Enterolab police of this forum - heaven forbid that anyone that does not have an actual positive biopsy think they might have celiac. We must just be a bunch of Enterolab diagnosed hypochondriacs. well maybe except for my one friend that is double DQ1 & positive biopsy & then positive thru Enterolab for gluten and dairy. Oh NO, wait, although she has a positive biopsy it must be only gluten intolerance because she does not have DQ2 or DQ8, okay maybe it is just in her head too...

But what I really think is that anyone smart enough to quit eating gluten before the villi are damaged should not care what anyone says that had to wait to get a positive biobsy before listening to what their body was telling them & then to down play the suffering of others.

I believe the statement in question was regarding Enterolabs DIAGNOSING for Celiac Disease. It is my understanding, as I have stated in the past, that Enterolabs does not and cannot diagnose for Celiac Disease. They can, however, test for sensitivities to certain foods.

If I am incorrect, please feel free to correct me. If I am wrong, I will sincerely apologize. Accuracy on this forum is very important to me, as is to the people who depend on it.

I was diagnosed through a biopsy and then found out what Celiac Disease was. I had no idea what was wrong with me other than the fact that I thought I was dying. In my time here on this forum I have never been critical of those who chose a different road. We all endure the same voyage.

Apparently, I hit a sensitive note.

sickchick Community Regular
sickchick
Posted
  • Author

I appreciate everyone's imput, I really really do B)

MUAH!

sickchick

jerseyangel Proficient
jerseyangel
Posted
I think MommaGoose is the anti Enterolab police of this forum

Quite the contrary. MommaGoose was simply stating fact--that Enterolab does not diagnose Celiac Disease. They say as much on their site. It's important that we keep the facts straight on the board.

One thing I've always had a great deal of respect for on this board is that although there are disagreements from time to time, we are very respectful of one another--no matter if an individual is diagnosed through traditional means, self diagnosed, found out through alternative testing, or diagnosed gluten sensitive through Enterolab. We're all in the same day to day boat, and do the best we can to support one another.

I think it's important to keep in mind board rule #1, which is: Do not be abusive or otherwise out of line towards other board members. Show respect for each board member, no matter what you think of their views. This is not a place to quarrel.

NoGluGirl Contributor
NoGluGirl
Posted

Dear Patti,

I agree we are here to support one another. It is alright to disagree, as long as we respectfully do so. Fighting does absolutely no good. The negative energy does not help any of us heal, and in fact, adds to our illness. I hate it when people get in fights.

Sincerely,

Jin

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. cristiana
      - cristiana replied to KathyR37's topic in Coping with Celiac Disease
      4

      New here

      Hi @KathyR37 and a very warm welcome here. I am so very sorry that you are going through all of this. I just wanted to check, have you ever been tested for any other gastrointestinal conditions? Cristiana
    2. trents
      - trents replied to KathyR37's topic in Coping with Celiac Disease
      4

      New here

      @KathyR37, I would suspect that in addition to gluten intolerance, you have other food intolerances/sensitivities. This is very common in the celiac community. The most common offenders are oats, dairy, soy, corn and eggs with dairy and oats being the big two. Have you considered this? Have you tried keeping a food diary to detect patterns?
    3. Theresa2407
      - Theresa2407 replied to Theresa2407's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Probiotics

      thank you for your advice. I have always taken them and I use Stonehedge because they are in a glass bottle, but don't have to be refrigerated. I also like they are 3rd party tested and state gluten free. But you never know if something better has come alone over the years.
    4. KathyR37
      - KathyR37 replied to KathyR37's topic in Coping with Celiac Disease
      4

      New here

      Thank you for your response. I have already learned about the info you sent but i appreciate your effort. I am the only one in my family cursed by this disease. I have to cook for them too. I make sure that my utensils are free of gluten and clean after using them for other food. I use non-porous pots and pans and gloves when cooking for them. One huge problem...
    5. Scott Adams
      - Scott Adams replied to KathyR37's topic in Coping with Celiac Disease
      4

      New here

      What you've described—the severe weight loss, the cycle of medications making things worse, and the profound fear of eating before leaving the house—is a heavy burden to carry for 15 years. It is absolutely not your fault. While everyone's journey with celiac is different, the struggles with the learning curve, social isolation, and dietary grief are fee...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,814
    • Most Online (within 30 mins)
      7,748
    ColbyBowlin
    Newest Member
    ColbyBowlin
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Who's Online (See full list)

  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • cristiana
      New here

      By cristiana · Posted

      Hi @KathyR37 and a very warm welcome here.  I am so very sorry that you are going through all of this. I just wanted to check, have you ever been tested for any other gastrointestinal conditions? Cristiana  
    • trents
      New here

      By trents · Posted

      @KathyR37, I would suspect that in addition to gluten intolerance, you have other food intolerances/sensitivities. This is very common in the celiac community. The most common offenders are oats, dairy, soy, corn and eggs with dairy and oats being the big two. Have you considered this? Have you tried keeping a food diary to detect patterns?
    • Theresa2407
      Probiotics

      By Theresa2407 · Posted

      thank you for your advice.   I have always taken them and I use Stonehedge because they are in a glass bottle, but don't have to be refrigerated.  I also like they are 3rd party tested and state gluten free. But you never know if something better has come alone over the years.
    • KathyR37
      New here

      By KathyR37 · Posted

      Thank you for your response. I have already learned about the info you sent but i appreciate your effort. I am the only one in my family cursed by this disease. I have to cook for them too. I make sure that my utensils are free of gluten and clean after using them for other food. I use non-porous pots and pans and  gloves when cooking for them. One huge problem I have is a gag reflex out of this world and if something doesn't taste good it is not going down. Most commercially made breads and such taste like old cardboard.Pastas are about the same. I did find one flour that I like and use it regularly, but it is so expensive! All gluten free food is way more expensive. I only eat twice a day because I cannot afford to buy all that. We live on a very low income so my food purchases are quite limited.
    • Scott Adams
      New here

      By Scott Adams · Posted

      What you've described—the severe weight loss, the cycle of medications making things worse, and the profound fear of eating before leaving the house—is a heavy burden to carry for 15 years. It is absolutely not your fault. While everyone's journey with celiac is different, the struggles with the learning curve, social isolation, and dietary grief are feelings many in the community know all too well. Your question about whether you should just eat what you want and manage the symptoms is a heartbreaking one, born from years of frustration. It's crucial to know that the diarrhea is a sign of ongoing damage to your small intestine from gluten, and simply managing the symptom with Imodium doesn't stop that internal harm or the risk of other complications. The fact that you are still getting sick within an hour of eating, even while trying to be gluten-free, is a huge red flag that something isn't right. This could be due to cross-contamination in your kitchen (e.g., using a shared toaster, colander, or condiment jars), hidden gluten in foods, or the possibility of another concurrent condition like refractory celiac disease. Don't give up!  This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
×
×
  • 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.