I'm New With Blood Test Results And Qs

[momof4inla]

Hello, my name is Amy and I have been reading posts here on and off for about a week.

Last week I had a blood test, and yesterday I had a colonoscopy, ultrasound, and upper endoscopy. This morning I also had a CAT scan. All testing so far shows everything is normal. We are only waiting on biopsies.

My blood test results are as follows: (used Prometheus Labs)

AGA IgG: negative

AGA IgA: negative

TTG IgA: negative

EMA IgA: negative

Results do not support a diagnosis of celiac disease.

Assay Result:

AGA IgG: 2.2 reference range: <10.0

AGA IgA: <1.2 reference range: <5.0

TTG IgA: <1.2 reference range: <4.0

EMA IgA: negative

Total IgA: 182 reference range <3 years: 8-220

3-13 years: 41-395

>13 years to adult: 44-441

So my question is how likely is it that this is a false negative? I am waiting on biopsy results, however I don't think my doctor took more than one biopsy. He never did think I had celiac disease... in fact just by looking at me he said "Ah, not many people have that... your problem is IBS." He gave me the celiac blood test to appease me.

He decided to run all the other tests to rule out everything else. Like I said, so far everything is normal.

I had decided to go to the Dr to begin with because I was tired of suffering and being sick all the time. A friend mentioned gluten and I dismissed it... this was several months ago. Then I had a really bad episode a couple of weeks ago, and while I was laying curled up in pain on my bathroom floor, I vowed to get to the bottom of this.

I remembered what my friend had said about gluten, and started reading on Celiac Disease and I became absolutely convinced that that is what is wrong with me. After all, 15 years ago (when I was 15 years old) I was tested for everything under the sun EXCEPT Celiac Disease. 15 years ago, I had no diagnosis. They just told me I had what "mimicked" IBS but that IBS sufferers usually don't vomit like I did.

Anyway... back to present day... my symptoms match what a Celiac suffers with...

Extreme bloating (look like I'm pregnant after eating)

Gas

Alternating Constipation/Diarrhea

Cramping and pain

Nausea

Sometimes extreme abdominal pain with or without vomiting

I also have:

acne

itchy skin

migraines and headaches

dry eyes

chronic fatigue

no energy

back pain

Mood swings

Irritability

I noticed that most of my pain comes after eating pasta dishes and anything with a gravy... I'm a South Louisiana girl and we like our rice and gravy! I never did eat much bread though...

I am also 100 pounds and 5'1", can't gain weight, and very small. (despite having s voracious appetite.) I have had stomach issues since childhood, with it becoming full force around the age of 15. As a newborn I was diagnosed as "failure to thrive" and didn't grow until my mother stopped breastfeeding and put me on soy formula. She also says I had a new skin rash every week. I also had allergies and asthma.

I just feel like I am 30 years old and tired of dealing with all this. I think I'm too young to feel this bad.

I am planning on starting a Gluten Free diet just to see if it helps. I couldn't believe that my blood test results were negative - I just could not believe it. I got a copy to see for myself. So just wondering if this could be falsely negative... and just hanging around waiting for biopsy results, although I don't have much faith in that either, since I'm pretty sure he didn't take enough samples.

So, my other question is - would just a gluten intolerance cause all those symptoms - without it being full-fledged Celiac?

Thanks for any help and time you can give me. I may be hanging around here more often for support in a gluten free diet!

[tarnalberry]

Gluten intolerance could cause any of those symptoms, but there's no particular reason to assume that everything that doesn't feel right with you is from a gluten intolerance, even if you have one. So, while I encourage you to try a gluten free diet, don't give it up if only half of your symptoms resolve - that big of a change is still a very very telling sign

How likely a false negative? No one can tell you. Your plan - trying the diet - is the best way to go. Make sure to be quite careful about "hidden" gluten and cross contamination for the dietary trial to be worthwhile.

[momof4inla]

Thanks for replying, tarnalberry!

I don't mean to sound like i am assuming anything... I just really thought maybe it is that because I have been tested for everything else. I have even had my thyroid checked, and saw a cardiologist because of shortness of breath and other related symptoms. At that time they told me it was anxiety after all tests were normal, because I was sighing a lot. Sure enough... about 3 weeks after being told anxiety I had my first panic attack. Since then I also was diagnosed with hypoglycemia.

It's just that I never gave a food allergy or intolerance a second thought!

I don't want to accept that it's IBS and will just have to live with it. You know? I will gladly live with a certain diet if I could just feel better.

I was thinking about doing the Enterolab thing... it seems like that is more reliable, right?

I know that Celiac blood tests have a high instance of false negatives when a certain thing in the blood is insufficient (I can't remember at the moment) but I don't understand the test results so I don't know if mine was sufficient or not.

I don't want to do the Enterolab and spend more money if it's not likely that the test is wrong.

Everything is just so confusing.

How long should I try a gluten free diet if I expect to see changes? 3 weeks? 3 months? 6 months?

[tarnalberry]

I don't think there's a really great rule for how long to try it. I'd vote three months.

The only reason I came across a little ... strident? something, anyway ... was that it can be easy to say "something is wrong with me", think we find an answer, and dismiss it when we don't get "all better". But it might not be gluten (or just gluten). If you notice that it's connected to when/what you eat, a food diary (or elimination diet, if you're up for that) may be worth while. Gluten, dairy, and soy seem to be the MOST common on here, but nightshades, uncooked fruits/vegetables, corn, eggs, nuts, and corn are also quite possible.

[momof4inla]

That is good advice, thank you. I guess I'll eliminate one "allergen" at a time? Or eliminate all and reintroduce one at a time?

Any other thoughts are welcome.

[tarnalberry]

That is good advice, thank you. I guess I'll eliminate one "allergen" at a time? Or eliminate all and reintroduce one at a time?

Any other thoughts are welcome.

You can do an elimination diet either way - and if you search on here, you'll find posts from a lot of folks who have done them.

My background is in science, so my preference in doing an elimination diet is cutting out all but a dozen or so (literally) foods. Those foods you do eat should have a low potential for allergies and intolerances. You stick with that for a week or two, then add one food in for a week, and see if there's any change. Unfortunately, this is a horridly difficult way to go. While quite effective, I found it VERY hard to maintain, and stopped short (but I didn't have a lot of intolerances and didn't plan ahead well enough).

Doing it the other way is definitely doable, but it's harder to sort things out if you have multiple intolerances that way.