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

My Understnding Of Tests - Thoughts?


pgrovetom

Recommended Posts

pgrovetom Rookie

I had bizarre symptoms that pointed to my regular wheat breakfast and fairly high gluten diet.

Once I realized it, I immediately stopped the wheat breakfast and had unambiguous improvements within a few weeks.

I reviewed the literature and decided to go Gluten free since its the real "acid" test.

Just as I was beginning the gluten free diet I had the standard Celiac/Gluten panel

Deamidated Gliadin Abs, IgA = 10.4 High meaning antibodies present

Deamidated Gliadin Abs, IgG and = 2.2 Low meaning very few antibodies and normal

t-Transglutaminase (tTG) IgA = 1 Low meaning very few antibodies and normal

I knew my stopping wheat was unambiguous. It had a positive effect that was large

I tested High for the Gliadin ( gluten protein) antibodies - this test is very 97% specific and 71% sensitive

That means a positive test is a 97% probability that I am sensitive/allergic to the gluten = Gliadan protein

If the test was done correctly (not guaranteed) then its very likely I am allergic to Gluten proteins

That confirms my already obvious evidence and my conclusion - I am allergic to wheat/gluten/gliadan protein

Thats good to know but has it damaged my intestines ( Celiac) and how is my absorption?

But the IgG test was low. It is less specific and more sensitive. This doesn't trump my conclusion with two strong indicators.

I learned nothing from the IgG test but if it had been positive, I would have another indicator

I had a low tTG IgA test. Since this test is not for the gluten protein antibodies but is looking for the celiac damage to the intestine tissue, its suggests my allergy has not done substantial damage. Probably. It just indicates that severe damage to my intestines is unlikely. I would need a biopsy of my intestines to learn more or repeat the test to get more confidence. Only a biopsy would provide proof of damage. That damage would not prove I had a nutrient absorption problem however. If I have biopsy noticeable damage, only doing a broad nutrient test would verify it was having consequences. If I was low in folate, B12, iron etc..., that would indicate an actual nutrient shortage probably caused by the intestine damage.

I'm not going to bother with a biopsy and just continue my gluten free diet. If I get sick of the diet, I could later try and determine how "gluten free" was needed. If the diet works and since I know I'm allergic to gluten, that's my best course for now.

If I had shown positive for IgG but not IgA, that could be caused by a problem where I don't produce IgA as 2% of the population.

If I had been positive on tTG IgA and negative on the others, I would want a retest. The tTg could be a result of something other than gluten but unlikely.

I believe its generally true that if I show up with a positive on any of the tests in combination with my large impact for wheat reduction, that's pretty conclusive. Additional positives would raise the probability to near 100%. Negatives probably don't mean much except the tTg IGA suggests my actual intestine damage is probably not severe. Only a biopsy would tell me more. Why bother. I'm just stopping ingestion of gluten as I already feel better and I have blood test antibody evidence.

I will recheck in 6 months out of curiosity.

Anybody disagree and if so, why precisely?

Tom


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



Celiac.com Sponsor (A8-M):



Tallforagirl Rookie
I had bizarre symptoms that pointed to my regular wheat breakfast and fairly high gluten diet.

Once I realized it, I immediately stopped the wheat breakfast and had unambiguous improvements within a few weeks.

I reviewed the literature and decided to go Gluten free since its the real "acid" test.

Just as I was beginning the gluten free diet I had the standard Celiac/Gluten panel

Deamidated Gliadin Abs, IgA = 10.4 High meaning antibodies present

Deamidated Gliadin Abs, IgG and = 2.2 Low meaning very few antibodies and normal

t-Transglutaminase (tTG) IgA = 1 Low meaning very few antibodies and normal

I knew my stopping wheat was unambiguous. It had a positive effect that was large

I tested High for the Gliadin ( gluten protein) antibodies - this test is very 97% specific and 71% sensitive

That means a positive test is a 97% probability that I am sensitive/allergic to the gluten = Gliadan protein

If the test was done correctly (not guaranteed) then its very likely I am allergic to Gluten proteins

That confirms my already obvious evidence and my conclusion - I am allergic to wheat/gluten/gliadan protein

Thats good to know but has it damaged my intestines ( Celiac) and how is my absorption?

But the IgG test was low. It is less specific and more sensitive. This doesn't trump my conclusion with two strong indicators.

I learned nothing from the IgG test but if it had been positive, I would have another indicator

I had a low tTG IgA test. Since this test is not for the gluten protein antibodies but is looking for the celiac damage to the intestine tissue, its suggests my allergy has not done substantial damage. Probably. It just indicates that severe damage to my intestines is unlikely. I would need a biopsy of my intestines to learn more or repeat the test to get more confidence. Only a biopsy would provide proof of damage. That damage would not prove I had a nutrient absorption problem however. If I have biopsy noticeable damage, only doing a broad nutrient test would verify it was having consequences. If I was low in folate, B12, iron etc..., that would indicate an actual nutrient shortage probably caused by the intestine damage.

I'm not going to bother with a biopsy and just continue my gluten free diet. If I get sick of the diet, I could later try and determine how "gluten free" was needed. If the diet works and since I know I'm allergic to gluten, that's my best course for now.

If I had shown positive for IgG but not IgA, that could be caused by a problem where I don't produce IgA as 2% of the population.

If I had been positive on tTG IgA and negative on the others, I would want a retest. The tTg could be a result of something other than gluten but unlikely.

I believe its generally true that if I show up with a positive on any of the tests in combination with my large impact for wheat reduction, that's pretty conclusive. Additional positives would raise the probability to near 100%. Negatives probably don't mean much except the tTg IGA suggests my actual intestine damage is probably not severe. Only a biopsy would tell me more. Why bother. I'm just stopping ingestion of gluten as I already feel better and I have blood test antibody evidence.

I will recheck in 6 months out of curiosity.

Anybody disagree and if so, why precisely?

Tom

What were the ranges for your tests? What was your total IGA? They should have tested your total IGA, and if it was low, this invalidates the tTG IGA.

If you just have an allergy, it wouldn't cause damage to your intestine, so most likely any tTG test would be negative. As you were "gluten lite" before the tests, this may affect the results too, although a positive blood test would take time to normalise after removal of gluten from the diet, six months or more.

The only way to be sure you were getting valid test results would be to go back on the gluten for a while, so you have to ask yourself if you're prepared to do that.

If you think you may not be able to stick to a gluten-free diet without definitive test results, then it would be best to do "gluten challenge" and get retested.

pgrovetom Rookie
What were the ranges for your tests? What was your total IGA? They should have tested your total IGA, and if it was low, this invalidates the tTG IGA.

If you just have an allergy, it wouldn't cause damage to your intestine, so most likely any tTG test would be negative. As you were "gluten lite" before the tests, this may affect the results too, although a positive blood test would take time to normalise after removal of gluten from the diet, six months or more.

The only way to be sure you were getting valid test results would be to go back on the gluten for a while, so you have to ask yourself if you're prepared to do that.

If you think you may not be able to stick to a gluten-free diet without definitive test results, then it would be best to do "gluten challenge" and get retested.

thanks

I'm doing fine gluten free for now but haven't experienced the eating out problem. It wasn't difficult and finding some bread, pizza and cookies that are gluten free wasn't hard ( they don't taste as good ) so only time will tell. I know there are going to be restaurant problems in some cases but I'll deal with it when it happens.

I was not Gluten-lite at testing, I was gluten heavy from breads, cookies, pizza, and all sorts of wheat flour based products. I had stopped the gluten gross overload by eating a very large bowl of MiniWheats each morning = Gluten overdose!.

The Gliadin IgA range is 0-10 U/ml - Mine was 10.4 = over the top

The Gliadin IgG range is 0-10 U/ml - mine was 2.2 = low

The tTG IgA range is negative = 0-3, weak positive = 4-10, positive = >10 U/ml and mine was 1 = low negative

My understanding is that the Gliadin IgA is looking for the actual IgA antibodies for the actual Gliadin protein which is how the immune system marks/identifies the allergen for immune response to the protein. The simple presence of Gliadin antibodies in over the top amounts means my immune system is creating antibodies because it believes they are harmful irrespective of whether they really are. Even though the immune system is often mistaken about something being a danger, the very response itself sets the immune response in action and causes problems experienced as symptoms.

The Gliadin IgG is the intestine tissue IgG immune response to the Gliadin protein so the IgG response was much less severe.

The tissue Transglutaminase tTG is the endomysial (tissue inflammation response) antigen that occurs as a result of the Gluten causing the intestine tissue damage that is called Celiac Disease. Just because your IgA immune system response believes you are allergic to Gluten, doesn't mean it will actually damage the intestine tissue leading to Celiac and absorption problems. But the simple IgA response to Glutens with Gliadin antibodies can cause symptoms but possibly not full blown Celiac.

I had always loved and eaten breads, cookies and lots of stuff containing Gluten. I had weird undiagnosed symptoms for years but not so severe it lead to gluten. A few years back, I began eating Frosted MiniWheats or similar almost every morning. Things got much worse and I hadn't connected it with the wheat. When I did, I stopped only the wheat breakfast but continued all other forms of wheat such as breads and cookies and baked foods with wheat flour ( and lots of it). Just stopping the MiniWheats 100% had the drastic effect on one of the worst symptoms. I then had the blood test and immediately thereafter stopped all Gluten. So the blood tests reflect my antibody levels about 2-3 weeks after stopping that HUGE gluten breakfast, but while still eating all other forms of wheat and not insignificant. I eat lots of breads. Had I taken the tests prior to stopping the MiniWheats, I might see higher numbers but I doubt it for the tTG because that's tissue damage response which is slower to resolve.

I thought about eating MiniWheats for a week and repeating the test but the symptoms were so awful, I couldn't bring myself to do it. The the scientist in me knew I really needed to verify my results and re-starting the MiniWheats would be a powerful verification, but I just couldn't. Maybe someday after the desire to not feel so lousy weakens enough for some real testing. I think Gluten free is fine for now.

Tom

ravenwoodglass Mentor
I thought about eating MiniWheats for a week and repeating the test but the symptoms were so awful, I couldn't bring myself to do it. The the scientist in me knew I really needed to verify my results and re-starting the MiniWheats would be a powerful verification, but I just couldn't. Maybe someday after the desire to not feel so lousy weakens enough for some real testing. I think Gluten free is fine for now.

Tom

A week is not long enough on a challenge to have the tests show positive if you have been gluten free for a bit. You would need to challenge for at least 3 months. A week is long enough to show a reaction though for many of us. Just not long enough for a blood test to show it. A strong reaction to the challenge is also diagnostic of your bodies not wanting gluten but not enoough for the antibodies to for sure show up or for an endo to show changes.

Also what the celiac panel is for is to show an antibody reaction not an allergic reaction. Some of us of course will also have an allergy to wheat but celiac is an intolerance reaction with antibodies formed not a histamine reaction like a true allergy.

flteacher Newbie

Hi everyone,

I'm new here, after inconsistent symptoms for a very long time: diarrea constipation and somewhere inbetween. severe heartburn, headaches, several times a week (which I could always justify), stomach problems which were never connected to anything (so I thought). What finally sent me to the GI dr. in early Jan. 09 was unable to swallow and keep even liquids down. The GI did a endoscope and took 12 biopsy's. While waiting for the results, I also tested neg. for all stool samples, and neg celiac panel: TTG: <3, IGA Serum: 136 <3.

The endoscope found a 2inch hietal hernia and "elevated -mild to moderate increase in intraepithelial lymphocytes (approx 30-40 per 100 epithelia cells. The report reads "These features are suspicious for early celiac disease, however, other hisotlogic features of malabsorption are not present. Correclation with serologic stduenis is recommended. That panal came back neg.

Biopsy: Duodenal mucosa showing focally increase intreapithelial lymphocytes

The GI put me on Nexium, referred me to a surgeon to repair the hernia and told me to go Gluten Free for 6 weeks and she would see and talk to me at a follow-up appointment.

As everyone knows gluten-free has not been a picnic (I HATE IT)!! Can someone please advice what my GI is doing here with the 6 week thing. I accidently got copies of my report, where I saw the GI had written on my neg. celiac blood panal lab report sheet "call patient, have her stop gluten-free diet" Of course I called her on this she said I should have never seen that and to continue gluten-free as planned. Since starting gluten-free on Jan. 15 I have occassional stomach upset, headaches have gone away, bowel movement somewhat regular. Any thoughts, ideas????? Do we always have to be our own dr.??

mushroom Proficient
Any thoughts, ideas????? Do we always have to be our own dr.??

Hi and welcome to the board. Unfortunately, the answer to your question is often yes, because we know our bodies better than anyone else. I am sure your doctor wants to see if you respond to the diet, which is pretty diagnostic in and of itself, while not "the gold standard." But why wait until you have fullblown celiac and other problems before seeing if that could be the problem. Stay on the diet, and I hope it works. Expect to have some bumps along the way, we all do, and we often find other food problems (hope you don't).

Good luck!

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,996
    • Most Online (within 30 mins)
      7,748

    Sasha Bondarev
    Newest Member
    Sasha Bondarev
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • knitty kitty
      @sleuth, Has your son been checked for nutritional deficiencies?  All of those symptoms can be caused by malnutrition.  I had severe malnutrition that went unrecognized by my doctors.  Intense fatigue, brain fog, depression, anxiety, and gastrointestinal distress are symptoms of deficiencies in the eight essential B vitamins, especially Thiamine B1, which becomes low first because the demand is higher when we're sick.     Celiac Disease causes inflammation and damage of the intestinal lining which inhibits absorption of essential nutrients.  Checking for nutritional deficiencies is part of proper follow up care for people with celiac disease.   Is your son taking any vitamin supplements?  Most supplements contain thiamine mononitrate which in not readily absorbed and utilized by the body.  Benfotiamine is a form of thiamine that is shown to promote intestinal healing.  Benfotiamine is available over the counter.  Benfotiamine is safe and nontoxic.   Is your son eating processed gluten-free foods?  Gluten-free processed foods are not required to be enriched with vitamins like their gluten containing counterparts.   Is your son following a low histamine diet?  Histamine is released as part of the immune response to gluten and other foods high in histamine.  High levels of histamine in the brain can cause anxiety, insomnia, and depression.  The body needs the B vitamins to make the enzyme Diamine Oxidase (DAO) to break down and clear histamine.  DAO supplements are available over the counter.  Vitamin C helps clear histamine as well.  Some people find over the counter antihistamines helpful as well, but they're not for long term use.   Nicotine has antihistamine-like properties, but can also irritate the gut.  Tobacco, from which nicotine is derived, is a nightshade (like tomatoes, potatoes, peppers and eggplant).  Nightshades contain alkaloids which affect gastrointestinal permeability, causing leaky gut syndrome.  Nicotine can cause gastrointestinal irritation and alter for the worse the microbiome. Safer alternatives to Nicotine that have antihistamine properties include Lemon Balm (Sweet Melissa),  Passion Flower, Chamomile, and Bilberry.  They can be taken as supplements, extracts, or tea.  These will help with the anxiety, insomnia and depression in a much safer way. Oolong tea is also helpful.  Oolong tea contains the amino acid L-Theanine which helps the digestive tract heal.  (L -Theanine supplements are available over the counter, if not a tea drinker.)  Tryptophan, a form of Niacin B3, also helps calm digestive symptoms.  Another amino acid, L-Lysine, can help with anxiety and depression.  I've used these for years without problems.   What ways to cope have you tried in the past?
    • Scott Adams
      They are a sponsor here, and I did noticed a free shipping coupon: GFships
    • Scott Adams
      In general if it is labelled gluten-free then it should be ok for most celiacs, however, those who are super sensitive (which is most who have dermatitis herpetiformis) may want to eat only certified gluten-free items, which are supposed to test down to 10ppm (but don't always!).
    • Wheatwacked
      Have faith, you will survive. I get mine from Pipingrock.com.  500 capsules of 10,000 IU for $22.  That is almost two years worth for me.  250 caps 5000 IU for $6.69 if you only take 5,000 a day.  It's like half the price of Walmart.
    • Wheatwacked
      Testing can't alone be trusted.  Else why would it take so many years of testing and retesting and misdiagnosis to finally be told, yes you have Celiac Disease. As to what to eat, I like pre 1950 style food.  Before the advent of TV dinners.  Fresh food is better for you, and cooking from scratch is cheaper.  Watch Rachel Ray's 30 Minute Meals for how to cook.  Keep in mind that she is not gluten free, but her techniques are awesome.  Just use something else instead of wheat, barley, rye. Dr Fuhrman is a ex cardiologist.  His book Eat to Live and Dr Davis' book Wheatbelly were instrumental in my survival.
×
×
  • 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.