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

Testing After Being gluten-free For Six Months

Lgood22573

Recommended Posts

Lgood22573 Rookie
Lgood22573
Posted

I have been gluten-free for six months. I did enterolab testing and that came back with very high antibodies (Transglutaminase IgA: 98 AND Anti-gliadin IgA: 57)10 and under is considered normal. I cut gluten out and had a literally miraculous recovery. I finally established myself with a new doctor and told him my story, and of course he said the stool testing meant "diddly squat" and he would do a blood test. Did I mention I'm on a Rx for B12, mag and D?????? My understanding is the blood will come back with normal antibodies since I have been gluten-free for so long. He said if that's the case, I don't have Celiac. He said the gluten-free diet was an unpleasant lifestyle and why put myself through it if it isn't necessary? I know I have a severe intolerance, not sure about the actual Celiac since I have not had a biopsy. I am sick in 10 minutes if I eat gluten, I am NEVER EVER eating gluten again. I guess it's just frustrating and I wanted some opninons. He said if the antibodies came back elevated, I really should do the biopsy, that even after six months the villi would still show damage.

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

Celiac.com Sponsor (A8-M):


AlysounRI Contributor
AlysounRI
Posted

He said the gluten-free diet was an unpleasant lifestyle and why put myself through it if it isn't necessary?

Did he really say that??

What a jerk.

Yes, after being off gluten for half a year you are very likely to have a positive blood test.

Like the sadist that he is, he will probably want you to make yourself sick for 3 months.

But it sounds like you already know what to do about that.

Unpleasant lifestyle?

Really??

Ugh <_<

Rebecca Madrid Newbie
Rebecca Madrid
Posted

I'm not being very helpful I know, but I have been gluten-free for about 3 months now, and was told the same thing. Health care differs from doctor to doctor, province to province. Out at school, the doctor had me remove gluten from my diet for nearly two weeks and then take the blood tests... not exactly effective and I tested negative. I have been told the same thing, that I would have to be on a rich gluten diet for at least two weeks before having another blood test. I also refused, It hurts, its inconvenient, and the possible long-term effects are not worth the positive result. How I feel is what truly matters, so I have chosen to remain on a strict gluten free diet based simply on how much better I feel.

My opinion and advice is not to hurt yourself any longer, if your anything like me, your kicking yourself now for how long you stayed sick without knowing why.

You will always know your own body better than any medical professional in that if it feels better, do it.

Good luck <3

ravenwoodglass Mentor
ravenwoodglass
Posted

Edited for accidental double post.

ravenwoodglass Mentor
ravenwoodglass
Posted

Did he really say that??

What a jerk.

Yes, after being off gluten for half a year you are very likely to have a positive blood test.

Like the sadist that he is, he will probably want you to make yourself sick for 3 months.

But it sounds like you already know what to do about that.

Unpleasant lifestyle?

Really??

Ugh <_<

I think Alysoun meant to say a negative blood test after 6 months gluten-free. Your doctor is not very well informed about celaic. He and too many others seem so reluctant to diagnose celiac. You would need a good 3 months of gluten if you want a doctor derived diagnosis. It sounds like you may want to keep looking for a more celiac savvy doctor if you can

GlutenFreeManna Rising Star
GlutenFreeManna
Posted

I have been gluten-free for six months. I did enterolab testing and that came back with very high antibodies (Transglutaminase IgA: 98 AND Anti-gliadin IgA: 57)10 and under is considered normal. I cut gluten out and had a literally miraculous recovery. I finally established myself with a new doctor and told him my story, and of course he said the stool testing meant "diddly squat" and he would do a blood test. Did I mention I'm on a Rx for B12, mag and D?????? My understanding is the blood will come back with normal antibodies since I have been gluten-free for so long. He said if that's the case, I don't have Celiac. He said the gluten-free diet was an unpleasant lifestyle and why put myself through it if it isn't necessary? I know I have a severe intolerance, not sure about the actual Celiac since I have not had a biopsy. I am sick in 10 minutes if I eat gluten, I am NEVER EVER eating gluten again. I guess it's just frustrating and I wanted some opninons. He said if the antibodies came back elevated, I really should do the biopsy, that even after six months the villi would still show damage.

I would have told him that eating gluten was a MUCH LESS PLEASANT lifestyle than avoiding it! Why put yourself through that pain, discomfort and health risk of eating gluten if it's not necessary. He sounds like the type that would have just diagnosed you with IBS and given you a prescription had you come in not knowing anything about celiac disease. I would get a new doctor if I were you. He didn't listen to you, the patient, at all and it sounds like he knows nothing about celiac's disease. Sadly, I couldn't find a doctor that would listen. After 3 miserable years and almost $10,000 in medical bills searching for a diagnosis I self-diagnosed via changing my diet. And I had miraculous results just like you. It sounds like you need a dr for the vitamin prescriptions, so I would keep looking if at all possible.

thleensd Enthusiast
thleensd
Posted

Get a new doctor!!

As yourself how important a formal diagnosis is. You know your body. Are you convinced enough to go gluten free for life? Even if it's not Celiac, you've clearly found a solution to feel better.

If you are still deficient in vitamins... maybe your gut is still damaged and would show on a biopsy? (which most won't do unless the numbers support it...)

Good luck!

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

Celiac.com Sponsor (A8-M):


Lgood22573 Rookie
Lgood22573
Posted
  • Author

I think at this point, I just give up. I have been eating gluten-free, and will just continue to eat gluten-free. It doesn't matter that he thinks it's not really necessary. I know my body. And I knew he would not hold any accountability to the Enterolab report. Sigh... it's like no one believes me. I will be dumbfounded if my labs show anything on them. Thanks everyone.

afreeclimber74 Rookie
afreeclimber74
Posted

My doctor swears that the antibodies stay in your system for many years, even after eating gluten free. Same as the immune antibody response to the flu, etc.

I took the blood test after being gluten free for about 8 months and the results were over 100 for both.

Rebecca Madrid Newbie
Rebecca Madrid
Posted

Based on the variety of medical opinion in this forum, I suggest you get your doctor to refer you to a specialist. Obviously this is only if you want a formal diagnosis, you already know well enough that gluten hurts you.

Because my sister is also currently undergoing testing and has come up positive, I have been advised that the villi would still be damaged 3 months later and perhaps a gastro specialist will be able to conduct the next step. Having said that, I have been waiting a month just for a call-back to make an appointment.

Its really up to you what you do formally, but even self-diagnosis, and contacting a nutritionist will help you feel better.

Hope that helps...and I agree, find a new doctor!!! One that's a little more sensitive to your opinions and experience. It'll make a difference.

Rebecca :)

Jestgar Rising Star
Jestgar
Posted

My doctor swears that the antibodies stay in your system for many years, even after eating gluten free. Same as the immune antibody response to the flu, etc.

Your doctor needs to review his immunology text. The cells that know how to make the specific antibodies stay in your system for years. They only produce antibodies when challenged with the appropriate antigen. If you have antibodies in your system after 8 months you either a)Clear antibodies very slowly, or b)Still occasionally get some gluten (or a combination of these).

Jestgar Rising Star
Jestgar
Posted

He said the gluten-free diet was an unpleasant lifestyle and why put myself through it if it isn't necessary?

Tell him you also feel better when you exercise, but you find that to be an 'unpleasant lifestyle'. Since you've never been formally tested to see if you need to exercise, should you stop doing it?

Lgood22573 Rookie
Lgood22573
Posted
  • Author

hee hee that was funny Jestgar. Thank you for all the great info everybody. I appreciate it.

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 sha1091a's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Issues before diagnosis

      I agree, it so often overlooked! I live in the UK and I have often wondered why doctors are so reluctant to at least exclude it - my thoughts are perhaps the particular tests are expensive for the NHS, so therefore saved for people with 'obvious' symptoms. I was diagnosed in 2013 and was told immediately that my parents, sibling and children should...
    2. chrisinpa
      - chrisinpa commented on Scott Adams's article in Skin Problems and Celiac Disease
      2

      Celiac Disease and Skin Disorders: Exploring a Genetic Connection

      Maybe they can attribute certain skin conditions to either being susceptible to getting Celiac......or the other way around....but I have to ask if certain people are prone to Celiac because of genetics and some people aren't. It's kind of the same thing as what came first.....the chicken or the egg.?
    3. knitty kitty
      - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      My journey is it gluten or fiber?

      @xxnonamexx, There's labeling on those Trubar gluten free high fiber protein bars that say: "Manufactured in a facility that also processes peanuts, milk, soy, fish, WHEAT, sesame, and other tree nuts." You may want to avoid products made in shared facilities. If you are trying to add more fiber to your diet to ease constipation, considering...
    4. trents
      - trents replied to sha1091a's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Issues before diagnosis

      Welcome to celiac.com @sha1091a! Your experience is a very common one. Celiac disease is one the most underdiagnosed and misdiagnosed medical conditions out there. The reasons are numerous. One key one is that its symptoms mimic so many other diseases. Another is ignorance on the part of the medical community with regard to the range of symptoms that celiac...
    5. trents
      - trents commented on Jefferson Adams's article in Other Diseases and Disorders Associated with Celiac Disease
      6

      Celiac Disease Patients Face Higher Risk of Systemic Lupus

      What kind of practitioner did the blood test? Was this a medical doctor, a naturopathic doctor, a GI doc? I would certainly follow up with them and ask why they advised you not to eat red meat. I mean, it could be something like they, themselves, are a vegetarian and give that advice to everyone. Have you had an endoscopy with biopsy of the small bowel...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,692
    • Most Online (within 30 mins)
      7,748
    Ali Zaib
    Newest Member
    Ali Zaib
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • cristiana
      Issues before diagnosis

      By cristiana · Posted

      I agree, it so often overlooked! I live in the UK and I have often wondered why doctors are so reluctant to at least exclude it - my thoughts are perhaps the particular tests are expensive for the NHS, so therefore saved for people with 'obvious' symptoms.  I was diagnosed in 2013 and was told immediately that my parents, sibling and children should be checked.  My parents' GP to this day has not put forward my father for testing, and my mother was never tested in her lifetime, despite the fact that they both have some interesting symptoms/family history that reflect they might have coeliac disease (Dad - extreme bloating, and his Mum clearly had autoimmune issues, albeit undiagnosed as such; Mum - osteoporosis, anxiety).  I am now my father' legal guardian and suspecting my parents may have forgotten to ask their GP for a test (which is entirely possible!) I put it to his last GP that he ought to be tested.  He looked at Dad's blood results and purely because he was not anemic said he wasn't a coeliac.  Hopefully as the awareness of Coeliac Disease spreads among the general public, people will be able to advocate for themselves.  It is hard because in the UK the NHS is very stretched, but the fallout from not being diagnosed in a timely fashion will only cost the NHS more money. Interestingly, a complete aside, I met someone recently whose son was diagnosed (I think she said he was 8).  At a recent birthday party with 8 guests, 4 boys out of the 8 had received diagnosis of Coeliac Disease, which is an astounding statistic  As far as I know, though, they had all had obvious gastric symptoms leading to their NHS diagnosis.  In my own case I had  acute onset anxiety, hypnopompic hallucinations (vivid hallucinations upon waking),  odd liver function, anxiety, headaches, ulcers and low iron but it wasn't until the gastric symptoms hit me that a GP thought to do coeliac testing, and my numbers were through the roof.  As @trents says, by the grace of God I was diagnosed, and the diet has pretty much dealt with most of those symptoms.  I have much to be grateful for. Cristiana
    • knitty kitty
      My journey is it gluten or fiber?

      By knitty kitty · Posted

      @xxnonamexx, There's labeling on those Trubar gluten free high fiber protein bars that say: "Manufactured in a facility that also processes peanuts, milk, soy, fish, WHEAT, sesame, and other tree nuts." You may want to avoid products made in shared facilities.   If you are trying to add more fiber to your diet to ease constipation, considering eating more leafy green vegetables and cruciferous vegetables.  Not only are these high in fiber, they also are good sources of magnesium.  Many newly diagnosed are low in magnesium and B vitamins and suffer with constipation.  Thiamine Vitamin B1 and magnesium work together.  Thiamine in the form Benfotiamine has been shown to improve intestinal health.  Thiamine and magnesium are important to gastrointestinal health and function.  
    • trents
      Issues before diagnosis

      By trents · Posted

      Welcome to celiac.com @sha1091a! Your experience is a very common one. Celiac disease is one the most underdiagnosed and misdiagnosed medical conditions out there. The reasons are numerous. One key one is that its symptoms mimic so many other diseases. Another is ignorance on the part of the medical community with regard to the range of symptoms that celiac disease can produce. Clinicians often are only looking for classic GI symptoms and are unaware of the many other subsystems in the body that can be damaged before classic GI symptoms manifest, if ever they do. Many celiacs are of the "silent" variety and have few if any GI symptoms while all along, damage is being done to their bodies. In my case, the original symptoms were elevated liver enzymes which I endured for 13 years before I was diagnosed with celiac disease. By the grace of God my liver was not destroyed. It is common for the onset of the disease to happen 10 years before you ever get a diagnosis. Thankfully, that is slowly changing as there has developed more awareness on the part of both the medical community and the public in the past 20 years or so. Blessings!
    • knitty kitty
      Dizziness after eating green beans?

      By knitty kitty · Posted

      @EndlessSummer, You said you had an allergy to trees.  People with Birch Allergy can react to green beans (in the legume family) and other vegetables, as well as some fruits.  Look into Oral Allergy Syndrome which can occur at a higher rate in Celiac Disease.   Switching to a low histamine diet for a while can give your body time to rid itself of the extra histamine the body makes with Celiac disease and histamine consumed in the diet.   Vitamin C and the eight B vitamins are needed to help the body clear histamine.   Have you been checked for nutritional deficiencies?
    • sha1091a
      Issues before diagnosis

      By sha1091a · Posted

      I found out the age of 68 that I am a celiac. When I was 16, I had my gallbladder removed when I was 24 I was put on a medication because I was told I had fibromyalgia.   going to Doctor’s over many years, not one of them thought to check me out for celiac disease. I am aware that it only started being tested by bloodwork I believe in the late 90s, but still I’m kind of confused why my gallbladder my joint pain flatulent that I complained of constantly was totally ignored. Is it not something that is taught to our medical system? It wasn’t a Doctor Who asked for the test to be done. I asked for it because of something I had read and my test came back positive. My number was quite high.Are there other people out here that had this kind of problems and they were ignored? 
×
×
  • 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.