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

Am I Or Not?

ane323

By ane323
in Coping with Celiac Disease

Recommended Posts

ane323 Newbie
ane323
Posted

In Nov of 2004 I was told that I was Gluten Intol. Then 2 months later I become preg. So I start the gluten-free diet, as miserable as it was I for the most part stayed gluten-free. After my son was born in Aug of 2005 I slowly started eating gluten again and was fine. I went and got another blood test done and it came back neg. (The first test had one post and one neg antibody or something like that, the second time both came back negative) Well now slowly my symptoms are comming back.

I went back to the doctor, a different one because mine was overbooked. ( All I really was looking for was a refferal to a GI specialist) He pretty much told me that eating gluten wouldn't kill me. It would just cause me to go to the bathroom. And that if I wanted to eat it go ahead. Well that bothered me. I felt like a complete idiot. I called back and got my referral and go in two weeks. I think the only way for me to quit eating it is for someone (a doctor) to tell me how serious it is. I also kind of want a test to show me how much dammage has been done if any has been done. Is that a colonoscopy? Please tell me I am not the only one out there who has gotten these mixed signals from doctors.

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

Celiac.com Sponsor (A8-M):


tiredofdoctors Enthusiast
tiredofdoctors
Posted

Hi there -- welcome to the forum . . .

Just wait -- you'll get PLENTY of answers that say you're not the only one with mixed answers from physicians! Practically everyone on this forum has gotten bad information at one time or another. There are blood tests which can be done: IgG Antigliadin antibodies, IgA Antigliadin antibodies, Antitransglultaminase antibodies and Antiendomysial antibodies. The last TWO listed are the ones which are much more indicative of Celiac disease. An endoscopy with multiple samples of the small intestinal villi is the "final" definitive answer. A good GI doctor will perform all of these. There are also tests through, I believe Enterolab, but I haven't had experience with them . . . there are many on the forum who can help you with that.

I do not have Celiac disease; I am, however, gluten intolerant. I have had "outrageously high" antigliadin antibodies according to my neurologists. The manifestation of my gluten intolerance has affected the cerebellum of my brain. By the way, your doctor is wrong . . . gluten intolerance CAN kill you. Ask my neurologists.

There is a book by Peter Green, MD -- it is called "Celiac Disease: The Hidden Epidemic". It is a very good book, and I would recommend it -- especially prior to going to the GI doc.

There is a thread on this forum -- under "coping" which gives us a place to vent and to tell our stories; one of the participants is a writer and is going to write a composition of these stories. You might want to look -- it is eye-opening. I think that the average is 6 doctors before you get a correct diagnosis. I might be wrong about that, and there are people on the forum who are much more knowledgeable than me.

You're probably at the beginning stages of frustration with doctors. I think all of us have gotten used to it. You'll get by, though, and you'll get to the correct diagnosis -- just hang in there! . . . . Lynne

ane323 Newbie
ane323
Posted
  • Author

What is the difference between Celiac disease and being gluten intolerent?

tiffjake Enthusiast
tiffjake
Posted
Hi there -- welcome to the forum . . .

Just wait -- you'll get PLENTY of answers that say you're not the only one with mixed answers from physicians! Practically everyone on this forum has gotten bad information at one time or another.

Yes there are! After going to through all of my testing (which was kinda back and forth because we weren't looking for Celiac) and getting a diagnosis, my doc STILL told me that it is ok to eat gluten every now and then.....but let me tell you, it is NOT ok with me. I have gotten SO sick now that my tolerance level is so low. I refuse!

And, to answer your question about gluten intolerance and Celiac....I have read that they are both, and I have also read that Celiac means a confirmed biopsy (small intestine endoscopy). I have my diagnosis without the endoscopy because my intestines shut down after eating a bowl of pasta (to celebrate my inconclusive blood work). I opted out of the endoscopy because my hubby is overseas and I didn't want to go through that alone. The doc warned me that I wouldn't be able to do it later because I would start healing, in the gut, and that is fine with me!

About wanting a doc or a test to "make" you go gluten-free, you will find it your answer if you look hard enough. Everyone has SOMETHING that pushed them into gluten-free. I had an Lame Advertisement test, the EnteroLab test, the genetic testing, found out about family history, and a VERY positive reaction to the gluten-free diet, so I don't WANT an endoscopy. But that is MY story, and I understand if you want to go with the procedure. Just be aware that many celiacs go through the endoscopy and still don't have a "definite" answer. Good Luck to you!!!!!

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,634
    • Most Online (within 30 mins)
      7,748
    Tiana
    Newest Member
    Tiana
    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

    • Scott Adams
      Buckwheat

      By Scott Adams · Posted

      I agree, there can be contamination at many points--milling is another possible source of contamination for any flours.
    • trents
      Buckwheat

      By trents · Posted

      Keep in mind that with manufactured food products, "gluten free" doesn't equate to no gluten. Things that are naturally gluten free can be cross-contaminated with gluten in the field, in shipping and in processing. In the U.S. companies can use the gluten free label as long as the product doesn't exceed 20ppm of gluten. That amount still may cause a reaction in some people.
    • deanna1ynne
      Inconclusive results

      By deanna1ynne · Posted

      Dd10 was tested for celiac four years ago bc two siblings were dx’d (positive labs and biopsies). Her results at the time were positive ema  and ttg (7x the UL), but a negative biopsy. We checked again three months later and her ttg was still positive (4x the UL), but ema and biopsy were negative. Doc said it was “potential celiac” and to keep eating gluten, but we were concerned about harming her growth and development while young and had her go gluten-free because we felt the labs and ema in particular were very suggestive of early celiac, despite the negative biopsies. She also had stomach aches and lethargy when eating it. We just felt it’d be better to be safe than sorry. Now, four years later, she doesn’t want to be gluten-free if she doesn’t “have to be,” so underwent a 12 week gluten challenge. She had labs done before starting and all looked great (celiac panel all negative, as expected.) Surprisingly, she experienced no noticeable symptoms when she began eating gluten again, which we felt was a positive sign. However, 12 weeks in, her labs are positive again (ttg 4x the UL and ema positive again as well). Doc says that since she feels fine and her previous two biopsies showed nothing, she can just keep eating gluten and we could maybe biopsy again in two years. I was looking up the ema test and the probability of having not just one but two false positives, and it seems ridiculously low.  Any advice? Would you biopsy again? She’s old enough at this point that I really feel I need her buy-in to keep her gluten-free, and she feels that if the doc says it’s fine, then that’s the final word — which makes me inclined to biopsy again and hope that it actually shows damage this time (not because I want her to have celiac like her sisters, but because I kind of think she already does have it, and seeing the damage now would save her more severe damage in the long run that would come from just continuing to eat gluten for a few more years before testing again.)  Our doc is great - we really like him. But we are very confused and want to protect her. One of her older sibs stopped growing and has lots of teeth problems and all that jazz from not catching the celiac disease sooner, and we don’t want to get to that point with the younger sis. fwiw- she doesn’t mind the biopsy at all. It’s at a children’s hospital and she thinks it’s kind of fun. So it’s not like that would stress her out or anything.
    • Inkie
      Buckwheat

      By Inkie · Posted

      Thanks for the replies. I already use a gluten-free brand of buckwheat flakes I occasionally get itchy bumps. I'm still reviewing all my food products. I occasionally eat prepackaged gluten-free crackers and cookies, so I'll stop using those. I use buckwheat flakes and Doves Farm flour as a base for baking. Would you recommend eliminating those as well? It's a constant search.
    • Wheatwacked
      Frequent nausea after gluten-free diet

      By Wheatwacked · Posted

      Gluten free food is not fortified with vitamins and minerals as regular food is.  Vitamin deficiencies are common especially in recently diagnosed persons,  Get a 25(OH)Vitamin D blood test. And work on raising it.  The safe upper blood level is around 200 nmol/L.    "Low serum levels of 25(OH)D have been associated with increased risk of autoimmune disease onset and/or high disease activity. The role of vitamin D in autoimmune diseases   🏋️‍♂️Good job!   I find the commercial milk will give me mild stomach burn at night, while pasture/grassfed only milk does not bother me at all.  While you are healing, listen to your body.  If it hurts to eat something, eat something else.  You may be able to eat it later, or maybe it is just not good for you.  Lower your Omega 6 to 3 ratio of what you eat.  Most omega 6 fatty acids are inflammation causing.    The standard american diet omega 6:3 ratio is estimated at upward of 14:1.  Thats why fish oil works
×
×
  • 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.