Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Recommended Posts

sickchick Community Regular

I am so happy :):):)


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



Celiac.com Sponsor (A8-M):



Guest thatchickali

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

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

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

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

Of testing what?

Guest thatchickali

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

Lisa Mentor
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

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

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

maybe so, :)

sickchick Community Regular

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

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

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
B) Way to go JNBunnie1
gfpaperdoll Rookie

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

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

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

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
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

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

MUAH!

sickchick

jerseyangel Proficient
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

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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,186
    • Most Online (within 30 mins)
      7,748

    Kris46
    Newest Member
    Kris46
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Ginger38
      So I recently had allergy testing for IGE antibodies in response to foods. My test results came back positive to corn, white potatoes, egg whites. Tomatoes, almonds and peanuts to name a few.  I have had obvious reactions to a few of these - particularly tomatoes and corn- both GI issues. I don’t really understand all this allergy versus celiac stuff. If the food allergies are mild do I have to avoid these foods entirely? I don’t know what I will eat if I can’t  have corn based gluten free products 
    • Kris2093u4
      Geography makes a difference.  I'm in the West and Trader Joe's gluten-free bread tastes great and is a better price than most gluten-free breads sold elsewhere in my area.  
    • JForman
      We have four children (7-14 yo), and our 7 year old was diagnosed with NCGS (though all Celiac labs were positive, her scope at 4 years old was negative so docs in the US won't call it celiac). We have started her on a Gluten Free diet after 3 years of major digestive issues and ruling out just about everything under the sun. Our home and kitchen and myself are all gluten-free. But I have not asked my husband/her dad or her other siblings to go completely gluten-free with us. They are at home, but not out of the home. This has led to situations when we are eating out where she has to consistently see others eating things she can't have and she has begun to say "Well, I can't have <fill in the blank>...stupid gluten."  How have you supported your gluten-free kiddos in the mental health space of this journey, especially young ones like her. I know it's hard for me as an adult sometimes to miss out, so I can't imagine being 7 and dealing with it! Any tips or ideas to help with this? 
    • Jane878
      By the time I was 5 I had my first auto0immune disorder, Migraine headaches, with auras to blind me, and vomiting, sensitivity to light and sound. I was 5 years old, and my stepfather would have pizza night, milling his own flour, making thick cheesy gluten pizza, that I would eat and the next day, I would have serious migraines, and my mother & stepfather did nothing about my medical problems. When I was 17 in my first year at college, I was diagnosed with my 2nd known auto-immune disorder, Meniere's disease. I was a elite athlete, a swimmer, and soccer player. And once again my parents didn't think anything of understanding why I had a disorder only older people get. Now after my mother passed from Alzheimer's disease she also suffered with living with gluten. She had a rash for 30 years that nobody could diagnose. She was itchy for 45 years total. My brother had a encapsulated virus explodes in his spleen and when this happened his entire intestines were covered with adhesions, scar tissue and he almost lost his life. He has 5 daughters, and when I finally was diagnosed after being pregnant and my body went into a cytokine storm, I lost my chance to have children, I ended up having Hashimoto's disease, Degenerative Disc disease, and my body started to shut down during my first trimester. I am 6ft tall and got down to 119lbs. My husband and I went to a special immunologist in Terrace, California. They took 17 vials of blood as we flew there for a day and returned home that evening. In 3 weeks, we had the answer, I have Celiac disease. Once this was known, only my father and husband made efforts to change their way of feeding me. At the family cabin, my stepfather & mother were more worried that I would ruin Thanksgiving Dinner. It wasn't until one of my cousins was diagnosed with Celiac disease. They finally looked into getting Gluten Free flour and taking measures to limit "gluten" in meals. He did nothing but ask for me to pay for my own food and wi-fi when I came to the cabin to stay after our house burned down. When he informed my mother, they proceeding to get into a physical fight and she ended up with a black eye. The is just more trauma for me. Sam had no interest in telling the truth about what he wanted. He lied to my mother that he had asked my husband if I could pay for "food" when he asked Geoffrey if I had money to pay for my wi-fi. My mother hates when he spends so much time on the computer so he lied and said I could pay for my own food. I will remind you I weighed 119lbs at this time. (At 6ft) that is a very sick looking person. Neither parent was worried about my weight, they just fought about how cheap my stepfather was. As my mother was diagnosed with Alzheimer's disease in 2014. He had her sign over the will to a trust and added his children. He had no testimonial capacity at the time, so she signed without proper papers. Making this Trust null and void. When I gave my brother my childhood home, my mother stated I would be getting an equal part of inheritance to the house on Race. It currently worth 2.0 million $. I got nothing, and my stepfather has since disowned me b/c of my claim and he knows that my mother would never have left it uneven between my biological brother and myself. She sat me and my husband down, as we lived at the Race Street house and treated and took care of it as our own. My brother took over b/c he was going through a horrific divorce and needed a home so he could get a better custody deal with his soon to be ex-wife who was a Assist DA for Denver. She used the girls against him, and he & I were the primary caregivers. We, Judd and I spent the most time with them pre the divorce. Once Judd moved into the house, he threw all of my mother, grandmother and my family heirlooms out to the Goodwill. Nobody told my mother about this as she was going through cancer treatment and had Alzheimer's disease in her mother and her sister. My stepfather and biological brother took advantage of this matter, as I called a "family council" that my brother just never could make it to at the last moment. All of the furnishing, kitchen ware, everything was in the house my brother just moved into. He had had 2 weddings, I chose to elope b/c my stepfather ruined my brother's first wedding by talking about his relationship with my brother in front of my dad and his entire family, insulting him and having my grandfather leave the ceremony. It was a disaster. My stepfather just plays dumb and blames my father for the slight. I was the only child not to have a wedding. So, my mother and stepfather never had to pay for a thing. My mother had had an agreement with my father he'd pay for college and all medical issues with their kids, myself and Judd. So truly my mother never had to pay for anything big for me in her entire life. I am looking for anyone that has had a similar story, where they grew up in a household that had a baker that regularly milled flour and ate gluten. What happened to you? DId you suffer from different auto-immune diseases b/c of living with a baker using "gluten" Please let me know. I have been looking into legal ways to get my stepfather to give me what my mother had promised, and he erased. Thank you for listening to my story. Jane Donnelly  
    • trents
      Possibly gluten withdrawal. Lot's of info on the internet about it. Somewhat controversial but apparently gluten plugs into the same neuro sensors as opiates do and some people get a similar type withdrawal as they do when quitting opiates. Another issue is that gluten-free facsimile flours are not fortified with vitamins and minerals as is wheat flour (in the U.S. at least) so when the switch is made to gluten-free facsimile foods, especially if a lot of processed gluten-free foods are being used as substitutes, vitamin and mineral deficiencies can result. There is also the possibility that she has picked up a virus or some but that is totally unrelated to going gluten-free.
×
×
  • Create New...