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

Blood Test Results Off The Charts

Woodrow

Recommended Posts

Woodrow Newbie
Woodrow
Posted

Hi folks. I actually got diagnosed with Celiac 3.5 months ago, but just had my first follow up visit with my gastro today. He showed me the original blood results as follows:

Tissue Transglutaminase Antibody, IGA

Between 5-8 is normal.

My level was over 100 (off the charts - the highest the doctor has ever seen he said)

Gliadin Antibody, IGA

Between 11-17 is normal.

My level was 70.

Gliadin Antibody, IGC

Between 11-17 is normal.

My level was 64.

I have been 100% gluten free (to the best of my knowledge...we've been incredible anal about it). But I am still feeling absolutely horrendous. Stomach pains, DD, you name it.

I was wondering if anybody out there had numbers similar to mine and can share their healing experience with me. I'm running out of patience.

Many thanks.

Woodrow

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

Celiac.com Sponsor (A8-M):


Lisa Mentor
Lisa
Posted

Try to eliminate dairy for a while while you heal. I am sure that it will make a difference to you.

Ursa Major Collaborator
Ursa Major
Posted

I second the dairy, but say, add soy to that. Those two often stop people from healing, even when on a 100% gluten-free diet.

Woodrow Newbie
Woodrow
Posted
  • Author

Thanks for the input thus far. I should've mentioned that I've been completely dairy free as well.

tarnalberry Community Regular
tarnalberry
Posted

you've been not eating out or at friend's houses? changed out all suspicious cookware (colanders/strainers, wooden spoons/cutting boards, toasters)? checked all suspicious ingredients for gluten-containing non-wheat ingredients? checked all medications and vitamins?

(just checking)

Sometimes, if there's been a lot of damage, it can take a year (at least) for levels to go down. Are you feeling any better?

Woodrow Newbie
Woodrow
Posted
  • Author
you've been not eating out or at friend's houses? changed out all suspicious cookware (colanders/strainers, wooden spoons/cutting boards, toasters)? checked all suspicious ingredients for gluten-containing non-wheat ingredients? checked all medications and vitamins?

(just checking)

Sometimes, if there's been a lot of damage, it can take a year (at least) for levels to go down. Are you feeling any better?

Have gone by the book as far as due diligence of keeping gluten free. Felt better for a bit, but brutal this past month.

WW340 Rookie
WW340
Posted

I had numbers similar to yours. My doctor also called them off the charts.

Tissue transglutaminase IGA - 161 (normal 0 - 19)

Gliadin IGG AB - 117 (normal 0 - 19)

Gliadin IGA AB - 117 (normal 0 - 19)

I got a lot of immediate relief on the diet. No more vomiting, no more violent early morning pain, and a big decrease in the diarrhea. I had all over itching that took a month or 2 to subside.

I continued to have loose stools off and on and some mild abdominal discomfort for about 6 - 8 months. I found that I cannot eat very much grain of any type except corn. I have to really limit the gluten free breads, cakes and cookies, or I have symptoms similar to being glutened, just much milder. Teff flour affects me very much like gluten.

Most days I have just meats, fruits, veggies, potatoes and some rice. I can do corn tortillas, just not the other flours.

I turned a corner at about 8 months and really started feeling wonderful, but then started going up and down again. I have not fully stabilized yet. I rarely have overt diarrhea, unless I eat a packaged product or gluten free bread, etc, but I am really just now having what I consider normal formed stools.

Like you, I am very diligent and watch everything. I rarely eat out, and then only where I feel pretty safe.

I found I cannot eat most products that are produced in factories that produce wheat foods even though the item itself is gluten free.

Dairy makes no difference for me. I have not tried eliminating soy, but I really don't eat many things that might contain soy, as I cook almost everything from scratch.

My worse symptom now is the continuing overwhelming fatigue that has been pretty much unrelenting.

I am just a few weeks shy of the 1 year mark.

Did you have an EGD or colonoscopy? Maybe you have more going on besides the celiac. I was found to have markers for crohns and increased eosinophils.

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

Celiac.com Sponsor (A8-M):


Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted

Many of us here found that we could not tolerate gluten-free breads, cakes, cookies, etc., until AFTER our guts had healed. THat meant not having ANY gluten-free breads, etc. for at least a few months!

Sounds cruel, but my own experience was that, even though my celiac symptoms were relatively mild, when I ate a piece of gluten-free bread, I felt like I'd swallowed a brick. I actually felt worse after eating gluten-free bread than regular bread!

That did change a few months into the diet.

If that still doesn't help, you might look into other food intolerances, and other causes, such as Lyme disease (you wouldn't believe how many here have it!), mercury toxicity, and somebody's posted a couple of threads about a syndrome that causes one to be unable to deal with protein!

Ursa Major Collaborator
Ursa Major
Posted

I forgot to mention that for about six months I was unable to eat any starches or grains at all. And I could not digest anything raw, including ordinary salad or fruit. So, for six months all my fruits or vegetables had to be well cooked, or I would have horrible stomach cramps and diarrhea within minutes, with everything coming back out undigested.

After six months I was able to tolerate some raw fruit (as in, maybe one a day), and a little bit of salad. I still have to limit raw fruit and vegetables after two years. I don't know how old you are, but I was undiagnosed for 52 years, and believe that I have some permanent damage that causes that.

Anyway, you may want to try just eating meat and well cooked vegetables and fruit for a while, and see if that makes any difference.

DElizabethE Apprentice
DElizabethE
Posted
Hi folks. I actually got diagnosed with Celiac 3.5 months ago, but just had my first follow up visit with my gastro today. He showed me the original blood results as follows:

Tissue Transglutaminase Antibody, IGA

Between 5-8 is normal.

My level was over 100 (off the charts - the highest the doctor has ever seen he said)

Gliadin Antibody, IGA

Between 11-17 is normal.

My level was 70.

Gliadin Antibody, IGC

Between 11-17 is normal.

My level was 64.

I have been 100% gluten free (to the best of my knowledge...we've been incredible anal about it). But I am still feeling absolutely horrendous. Stomach pains, DD, you name it.

I was wondering if anybody out there had numbers similar to mine and can share their healing experience with me. I'm running out of patience.

Many thanks.

Woodrow

Hi,

I was diagnosed Nov. 2006. My numbers were somewhat similar. tissue IgA- 162, IgA-165 and IgG-37. It took about 6 months for those levels to be down to normal. I was feeling better. But still after 15 months I still struggle a lot of days and get frustrated that I'll never be 100% (I keep going though). I tire so easily. Right now I'm down to a very basic diet again. That's when I feel the best. It's just hard because I'm a single Mom trying to take care of everything else too. But I know the diet works because after losing 30 lbs. before I was diagnosed I finally started gaining some of it back (only 8 so far).

So stay positive and don't get frustrated. You'll feel better again.

Diane

becky-tagett Newbie
becky-tagett
Posted

Hi Woodrow,

All of my blood results were way off the charts too and my biopsy showed nasty degradation of intestinal vili. I've been off gluten since july and still have bad diarrhea, but I have more energy and less depression and less belly pain.

I also hope to get better some day , but I am never sure if I have ingested some gluten by accident, because I still have the runs all the time!

Most people on this forum seem to have lots of digestive problems other that "classic" celiac, like you and I do. At least we know what we have!!

Becky

Archived

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

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


  • Member Statistics

    • Total Members
      131,280
    • Most Online (within 30 mins)
      7,748
    Celiac and Salty
    Newest Member
    Celiac and Salty
    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

    • numike
      is my cleiac disease gone?

      By numike · Posted

      69yo M I have had skin cancer basal  I use a higher quality Vit D https://www.amazon.com/Biotech-D3-5-5000iu-Capsules-Count/dp/B00NGMJRTE
    • Wheatwacked
      is my cleiac disease gone?

      By Wheatwacked · Posted

      Your high lactulose test, indicating out of control Small Itenstinal Bacterial O,vergrowth is one symptom.  You likely have low vitamin D, another symptom.  Unless you get lots of sun.   Celiac Disease is a disease of malabsorption, often leading to subclinical vitamin deficiencies.  A lot of people have these symptoms just before an acute phase of Celiac Disease.  Each of the symptoms can have multiple causes that are not celiac disease,  but when you start having multiple symptoms,  and each symptom is treated as a separate disease,  you have to think, maybe these are all one cause. celiac disease. There is a misconception that Celiac Disease is  a gastrointestinal disease and symptoms are only gastro related.  Wrong.  It is an autoimmune disease and has many symptoms that usually are disregarded.  I made that mistake until 63 y.o.  It can cause a dermatitis herpetiformis rash,  white spots on the brain.  It caused my alcoholism, arthritis, congested sineses, protein spots on my contacts lenses, swollen prostate, symptoms that are "part of aging". You may be tolerating gluten, the damage will happen. Of curiosity though, your age, sex, are you outside a lot without sunscreen?  
    • trents
      is my cleiac disease gone?

      By trents · Posted

      It would be interesting to see if you were tested again for blood antibodies after abandoning the gluten free diet for several weeks to a few months what the results would be. Don't misunderstand me. I'm not necessarily suggesting you do this but it is an option to think about. I guess I'm saying there is a question in my mind as to whether you actually ever had celiac disease. As I said above, the blood antibody testing can yield false positives. And it is also true that celiac-like symptoms can be produced by other medical conditions.
    • numike
      is my cleiac disease gone?

      By numike · Posted

      Thank you for the reply In the early 2000's I did not have the endoscopy nor the biopsy I do not have those initial records I have only consulted a GI drs in the USA 
    • trents
      is my cleiac disease gone?

      By trents · Posted

      Welcome to the forum, @numike! We sometimes get reports like yours from community members who believe their celiac disease has "gone away." We think there can sometimes be cases of remission but not long term healing and that continued consumption of gluten will eventually result in a relapse. This is the state of our knowledge at this point but there is still a lot we don't know and celiac disease continues to surprise us with new findings on a frequent basis. So, we would not advise you to abandon a strict gluten-free diet. Perhaps you can draw consolation from the fact that at the present time you seem to be able to consume gluten without consequences when in situations where you do not have the option to eat gluten-free. But I would advise you to not generalize your recent experience such that you throw caution to the wind. But I want to go back to what you said about being diagnosed by blood test in the early 2000's. Did you not also have that confirmed with an endoscopy and biopsy of the small bowel lining? Normally, a celiac disease diagnosis is not concluded based on a blood test alone because there can be false positives. What kind of doctor did this testing? Was it done in the U.S. or overseas? In the last few years, it has become common in the U.K. to grant a celiac diagnosis from blood testing alone if the antibody test scores are 10x normal or greater. But that practice has not caught on in the U.S. yet and was not in place internationally in the early 2000's. Do you have a record of the tests that were done, the scores and also the reference ranges for negative vs. positive for the tests?
×
×
  • Create New...