Blood Test Results Off The Charts

[Woodrow]

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

[Lisa]

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

[Ursa Major]

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]

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

[tarnalberry]

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]

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]

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.

[Fiddle-Faddle]

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]

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]

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]

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