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

I'm New With Blood Test Results And Qs

momof4inla

Recommended Posts

momof4inla Newbie
momof4inla
Posted

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!

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

Celiac.com Sponsor (A8-M):


tarnalberry Community Regular
tarnalberry
Posted

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 Newbie
momof4inla
Posted
  • Author

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. :lol:

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. :blink:

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

tarnalberry Community Regular
tarnalberry
Posted

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 :P ... 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 Newbie
momof4inla
Posted
  • Author

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 Community Regular
tarnalberry
Posted

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.

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. Scott Adams
      - Scott Adams replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Bob red mill gluten free oats

      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this...
    2. knitty kitty
      - knitty kitty replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      High TTG-IgG and Normal TTG-IgA

      @SamAlvi, It's common with anemia to have a lower tTg IgA antibodies than DGP IgG ones, but your high DGP IgG scores still point to Celiac disease. Since a gluten challenge would pose further health damage, you may want to ask for a DNA test to see if you have any of the commonly known genes for Celiac disease. Though having the genes for Celiac...
    3. trents
      - trents replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      High TTG-IgG and Normal TTG-IgA

      Currently, there are no tests for NCGS. Celiac disease must first be ruled out and we do have testing for celiac disease. There are two primary test modalities for diagnosing celiac disease. One involves checking for antibodies in the blood. For the person with celiac disease, when gluten is ingested, it produces an autoimmune response in the lining...
    4. SamAlvi
      - SamAlvi replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      High TTG-IgG and Normal TTG-IgA

      Thank you for the clarification and for taking the time to explain the terminology so clearly. I really appreciate your insight, especially the distinction between celiac disease and NCGS and how anemia can point more toward celiac. This was very helpful for me.
    5. Jsingh
      - Jsingh replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Son's legs shaking

      Hi, My 7 year daughter has complained of this in the past, which I thought were part of her glutening symptom, but more recently I have come to figure out it's part of her histamine overload symptom. This one symptom was part of her broader profile, which included irritability, extreme hunger, confusion, post-nasal drip. You might want to look up "histamine...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,868
    • Most Online (within 30 mins)
      7,748
    LMGarrison
    Newest Member
    LMGarrison
    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

    • Scott Adams
      Bob red mill gluten free oats

      By Scott Adams · Posted

      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this category, and eliminating them is the best way to figure this out. Some people substitute gluten-free quinoa flakes for oats if they want a hot cereal substitute. If you are interested in summaries of scientific publications on the topic of oats and celiac disease, we have an entire category dedicated to it which is here: https://www.celiac.com/celiac-disease/oats-and-celiac-disease-are-they-gluten-free/   
    • knitty kitty
      High TTG-IgG and Normal TTG-IgA

      By knitty kitty · Posted

      @SamAlvi, It's common with anemia to have a lower tTg IgA antibodies than DGP IgG ones, but your high DGP IgG scores still point to Celiac disease.   Since a gluten challenge would pose further health damage, you may want to ask for a DNA test to see if you have any of the commonly known genes for Celiac disease.  Though having the genes for Celiac is not diagnostic in and of itself, taken with the antibody tests, the anemia and your reaction to gluten, it may be a confirmation you have Celiac disease.   Do discuss Gastrointestinal Beriberi with your doctors.  In Celiac disease, Gastrointestinal Beriberi is frequently overlooked by doctors.  The digestive system can be affected by localized Thiamine deficiency which causes symptoms consistent with yours.  Correction of nutritional deficiencies quickly is beneficial.  Benfotiamine, a form of thiamine, helps improve intestinal health.  All eight B vitamins, including Thiamine (Benfotiamine), should be supplemented because they all work together.   The B vitamins are needed in addition to iron to correct anemia.   Hope this helps!  Keep us posted on your progress!
    • trents
      High TTG-IgG and Normal TTG-IgA

      By trents · Posted

      Currently, there are no tests for NCGS. Celiac disease must first be ruled out and we do have testing for celiac disease. There are two primary test modalities for diagnosing celiac disease. One involves checking for antibodies in the blood. For the person with celiac disease, when gluten is ingested, it produces an autoimmune response in the lining of the small bowel which generates specific kinds of antibodies. Some people are IGA deficient and such that the IGA antibody tests done for celiac disease will have skewed results and cannot be trusted. In that case, there are IGG tests that can be ordered though, they aren't quite as specific for celiac disease as the IGA tests. But the possibility of IGA deficiency is why a "total IGA" test should always be ordered along with the TTG-IGA. The other modality is an endoscopy (scoping of the upper GI track) with a biopsy of the small bowel lining. The aforementioned autoimmune response produces inflammation in the small bowel lining which, over time, damages the structure of the lining. The biopsy is sent to a lab and microscopically analyzed for signs of this damage. If the damage is severe enough, it can often be spotted during the scoping itself. The endoscopy/biopsy is used as confirmation when the antibody results are positive, since there is a small chance that elevated antibody test scores can be caused by things other than celiac disease, particularly when the antibody test numbers are not particularly high. If the antibody test numbers are 10x normal or higher, physicians will sometimes declare an official diagnosis of celiac disease without an endoscopy/biopsy, particularly in the U.K. Some practitioners use stool tests to detect celiac disease but this modality is not widely recognized in the medical community as valid. Both celiac testing modalities outlined above require that you have been consuming generous amounts of gluten for weeks/months ahead of time. Many people make the mistake of experimenting with the gluten free diet or even reducing their gluten intake prior to testing. By doing so, they invalidate the testing because antibodies stop being produced, disappear from the blood and the lining of the small bowel begins to heal. So, then they are stuck in no man's land, wondering if they have celiac disease or NCGS. To resume gluten consumption, i.e., to undertake a "gluten challenge" is out of the question because their reaction to gluten is so strong that it would endanger their health. The lining of the small bowel is the place where all of the nutrition in the food we consume is absorbed. This lining is made up of billions of microscopically tiny fingerlike projections that create a tremendous nutrient absorption surface area. The inflammation caused by celiac disease wears down these fingers and greatly reduces the surface area needed for nutrient absorption. Thus, people with celiac disease often develop iron deficiency anemia and a host of other vitamin and mineral deficiencies. It is likely that many more people who have issues with gluten suffer from NCGS than from celiac disease. We actually know much more about the mechanism of celiac disease than we do about NCGS but some experts believe NCGS can transition into celiac disease.
    • SamAlvi
      High TTG-IgG and Normal TTG-IgA

      By SamAlvi · Posted

      Thank you for the clarification and for taking the time to explain the terminology so clearly. I really appreciate your insight, especially the distinction between celiac disease and NCGS and how anemia can point more toward celiac. This was very helpful for me.
    • Jsingh
      Son's legs shaking

      By Jsingh · Posted

      Hi,  My 7 year daughter has complained of this in the past, which I thought were part of her glutening symptom, but more recently I have come to figure out it's part of her histamine overload symptom. This one symptom was part of her broader profile, which included irritability, extreme hunger, confusion, post-nasal drip. You might want to look up "histamine intolerance". I wish I had known of this at the time of her diagnosis, life would have been much easier.  I hope you are able to figure out. 
×
×
  • 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.