Anyone been tested for Celiac's disease?

Discussion in 'Fibromyalgia Main Forum' started by turtlesyndrome, Dec 17, 2006.

  1. turtlesyndrome

    turtlesyndrome New Member

    I was wondering if anyone on here has been tested for celiac's disease, and or has had thier symptoms vanish from a gluten-free diet?

    I have not been tested for Celiac's desease, however, I am more achy and brain foggy when I eat gluten. But My symptoms don't really improve when I avoid gluten. It's just that they get worse when I eat gluten. Does that make sense?
  2. cristine04

    cristine04 New Member

    Hi turtles!

    I am a fellow Norcal girl (26 yrs old)...

    I've been tested for celiac. I had the EGD (endoscopy) done by a GI doctor. I also had genetic testing sent to a lab in San Diego. I'm pretty sure the EGD is the best test to rule out celiac. It's WORTH getting this test to rule out the disease and since your symptoms get worse w/ gluten it seems like it would be particularly worth it for you.

    I would recommend Dr. Jeffrey Aron in San Francisco. He did my EGD and celiac testing. He has a website (just google his name)...Gut Check.

    Good luck!

    cristine


    [This Message was Edited on 12/17/2006]
  3. bunnyfluff

    bunnyfluff Member

    check my profile- it is part of what brought me here. I almost died from being undiagnosed for many years.

    When I suggest to people, they act like they would NEVER want to know that could be a possiblity, to have to give up that precious wheat!!

    When you read a lot of the data supplied, white items like sugar, flour, rice, etc., are terrible for us anyway. And yet, those with low blood counts, IBS, migraines, etc., would rather suffer than possibly find out a simple truth.

    Sometimes I feel like giving up, and yet, I swore if I could keep someone from the near death experience I had, saving one person would be worth the rant.

    So, please, if you have any mild symptoms, get checked!! My only "real" symptom for years was anemia that would not respond to iron, and mild depression. THAT'S IT!! But as it continued to destroy the villi in my intestine over time, the symptoms got extreme fast, and it all spun out of control.

    I am Celiac, and with this knowledge comes the fact that it will increse my chances of intestinal cancer should I choose to continue to eat wheat. I was gluten free for many years. Today if I run across it, it will make me more depressed, probably not give me any more pain or stomach pain than I suffer, maybe increase my fatigue.

    Long term, it would be terrible for me, for sure. I would never go back there.
  4. Adl123

    Adl123 New Member

    Hi,
    I was tested for Celiac's disease and it came out negative. However, I was on a Celiac diet at the time.

    Later, I found out that being on a Celiac diet can make you have a false negative. I haven't been retested, yet.

    I'm gluten, wheat, grain and diary intolerant. The only grains I can eat are rice, millet and corn. Celiac's disease and food intolerances are not always linked, are they? If they are, I'd better hurry and get that test done. I wonder if anyone knows if they are?

    Terry

  5. evol_or_revert

    evol_or_revert New Member

    but it came back negative.

    I went on the gluten free diet and it did help, but didn't fix it.

    Then I found out how bad soy can be!

    So I took soy out of my diet and now I have no trouble with gluten :D.

    Keep researching!

    Hope you find out what works for you

    evol
  6. turtlesyndrome

    turtlesyndrome New Member

    Cool NorCal rocks!
    Was your test positive for celiacs?

    Thanks for all the info guys?
  7. cristine04

    cristine04 New Member

    hey!

    My biopsies were negative for Celiac and for Whipple's disease. It was worth it for the rule out as I've had weight loss, have a tough time keeping weight on, had bloating, etc.

    I would definitely look into it...

    What else are you up to as far as treatment ideas?



    talk 2u soon!
    cristine
  8. victoria

    victoria New Member

    but read somewhere recently a home finger-prick test can be ordered for $99... lost my info, does any one know about this and how accurate it might be?

    all the best,
    Victoria

  9. turtlesyndrome

    turtlesyndrome New Member

    I have tried many treatments with little or no success. I did Teitalbaums protocal twice. I ended up spending like $500 a month in supplements. I've tried a lot of acupuncture, homeopathy, and supplements and spent thousands on it all. Now I just take the basics, like multivitamin, etc..

    I recently have looked into the stuff that Rich Carson does, like juicing and over all nutrition improvement. So lately I have been juicing daily, and trying to eat as many veggies and other whole foods as possible. Plus eating as little gluten as possible. I load up every weekend at the farmers market. The only thing I have noticed is a bit less brain fog.

    I also take a minimal amount of Rx meds for those bad days, such as muscle relaxers (flexeril) and sleep aids (ambien). Oh and for a few months I have been on a relatively low dose of desipramine (anti-depressant). I am not sure if it really helps or not.

    I recently heard about a Doctor at Stanford University who is doing studies with anti-virals with CFS patients. So I got a referral to see him. I sent my 100 pages of lab work and medical records and now I am just waiting for an appoinment. His name is Dr. Jose Montoya. If you search his name on this board you'll find more info on him. I am anxiously awaiting the phone call to set up the appointment.

    What about you, what treatments have you done and or currently do?
  10. turtlesyndrome

    turtlesyndrome New Member

    I've never heard of the home test. But I am interested in it. Let us know if you do it, or find out more about it.
  11. turtlesyndrome

    turtlesyndrome New Member

  12. turtlesyndrome

    turtlesyndrome New Member

    Thanks for the info, I'll check it out.
    Yeah tonight my Fiance and Brother ate pizza, while I ate rice and lots of veggies. Doing pretty good so far.
  13. turtlesyndrome

    turtlesyndrome New Member

    Wow Gluten Free pizza, I gotta get me some of that!
    Can you get it at specialty grocery stores, like Whole Foods? Where do I get it?
  14. mary124

    mary124 New Member

    Back in April of this year, i was really sick, so my doctor sent me to see a GI doc. He did blood work, which came back positive for this, but the biopsy and all came out negative. I'm better now, they never did figure it out really, they said it probably was my IBS-D acting up.
  15. turtlesyndrome

    turtlesyndrome New Member

    I found a place on the internet. But I don't know how they can ship frozen foods? Anyway here's the name, wellnessgrocer dot com
    Anyone know how they ship forzen foods?
  16. swedeboy

    swedeboy Member

    I found gluten free pizza at Whole Foods Market. The Brand is Amy's. They have a gluten and dairy free one, and also just a gluten free one. I am gonna try one tonight, I hope it tastes good.
  17. ayhatch

    ayhatch New Member

    Folks...
    I have been living with Gluten intolerance for years. There is an ABUNDANCE of great GF products out there. Such as Pamela's cookies and baking mixes. Her pancake mix and chocolate brownie mixes are staples in my house.Whole Foods does carry a lot of GF products.(Amy's GF pizza is great, but be cautioned that the dairy free one uses soy cheese. So many of us have problems digesting soy.
    Also go to www. glutenfree.com for shopping. I get lots of things in bulk from them, such as the absolutely best "Perfect Pie Crust" I have ever tasted.
    You should also go to the library or the bookstore and pick up one of the many books written by Bette Hagman. They are GF recipe books. There is even a GF "Book for Dummies" now.
    Good luck!
  18. z2rus

    z2rus New Member

    My antibodies test for celiac all negative that mean 99% chance that I am celiac free. Biopsy is a golden standard.
    But anyway I am GF.
    There was one remarkable study of autistic patients that shows low grade intestine inflammation (not to mention brains). And there was a lot of immunological data form those biopsies.
    Though source of inflammation remain elusive, those who were gluten and casein free shows lower cytokines level in biopsy material and thus lower grade of inflammation.

    [This Message was Edited on 12/28/2006]