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.

  • 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. - suek54 replied to suek54's topic in Dermatitis Herpetiformis
      7

      Awaiting dermatitis herpetiformis confirmation following biopsy

    2. - knitty kitty replied to suek54's topic in Dermatitis Herpetiformis
      7

      Awaiting dermatitis herpetiformis confirmation following biopsy

    3. - suek54 replied to suek54's topic in Dermatitis Herpetiformis
      7

      Awaiting dermatitis herpetiformis confirmation following biopsy

    4. - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      how much gluten do I need to eat before blood tests?

    5. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      how much gluten do I need to eat before blood tests?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,258
    • Most Online (within 30 mins)
      7,748

    Tdodge
    Newest Member
    Tdodge
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • suek54
      Wow KK, thank you so much for all your attached info. I had a very quick scan but will read more in depth later.  The one concerning corticosteroid use is very interesting. That would relate to secondary adrenal insufficiency I think , ie AI caused by steroids such as taken long term for eg asthma. I have primary autoimmune AI, my adrenals are atrophied, no chance if recovery there. But I am in touch with some secondaries, so something to bear in mind. .  Niacin B3 Very interesting too. Must have a good read about that.  Im sure lots of questions will arise as I progress with dermatitis herpetiformis. In the mean time, thanks for your help.
    • knitty kitty
      Welcome to the forum, @suek54, I have Dermatitis Herpetiformis, too.  I found taking Niacin B3 very helpful in clearing my skin from blisters as well as improving the itchies-without-rash (peripheral neuropathy).  Niacin has been used since the 1950's to improve dermatitis herpetiformis.   I try to balance my iodine intake (which will cause flairs) with Selenium which improves thyroid function.   Interesting Reading: Dermatitis herpetiformis effectively treated with heparin, tetracycline and nicotinamide https://pubmed.ncbi.nlm.nih.gov/10844495/   Experience with selenium used to recover adrenocortical function in patients taking glucocorticosteroids long https://pubmed.ncbi.nlm.nih.gov/24437222/   Two Cases of Dermatitis Herpetiformis Successfully Treated with Tetracycline and Niacinamide https://pubmed.ncbi.nlm.nih.gov/30390734/   Steroid-Resistant Rash With Neuropsychiatric Deterioration and Weight Loss: A Modern-Day Case of Pellagra https://pmc.ncbi.nlm.nih.gov/articles/PMC12532421/#:~:text=Figure 2.,(right panel) upper limbs.&text=The distribution of the rash,patient's substantial response to treatment.   Nicotinic acid therapy of dermatitis herpetiformis (1950) https://pubmed.ncbi.nlm.nih.gov/15412276/
    • suek54
      Thank you all for your advice and the dermatitis herpetiformis article. The latter made me realise I had stopped taking my antihistamine, which I will restart today. The Dapsone has cleared the rash entirely but I still get quite a bit itching, absolutely nothing to see though. I know its notoriously hard to clear and its still relatively early days for me.  The iodine issue is very interesting. I do eat quite a bit of salt because I have Addison's disease and sodium retention is an issue. I also have autoimmune hypothyroidism, not sure how a low iodine diet would play into that? Because of my Addison's I am totally steroid dependent, I take steroids 4 x daily and cannot mount any defence against inflammation. I need to increase my meds for that. Now that I know what is wrong I can do just that if Im having a bad day. Life is very sweet, just so damn complicated sometimes! Hey ho, onwards. Thank you again for your advice.  
    • trents
      So, essentially all of the nutrition in the food we eat is absorbed through the villous lining of the small bowel. This is the section of the intestinal track that is damaged by celiac disease. This villous lining is composed of billions of finger-like projections that create a huge amount of surface area for absorbing nutrients. For the celiac person, when gluten is consumed, it triggers an autoimmune reaction in this area which, of course, generates inflammation. The antibodies connected with this inflammation is what the celiac blood tests are designed to detect but this inflammation, over time, wears down the finger-like projections of the villous lining. Of course, when this proceeds for an extended period of time, greatly reduces the absorption efficiency of the villous lining and often results in many and various nutrient deficiency-related health issues. Classic examples would be osteoporosis and iron deficiency. But there are many more. Low D3 levels is a well-known celiac-caused nutritional deficiency. So is low B12. All the B vitamins in fact. Magnesium, zinc, etc.  Celiac disease can also cause liver inflammation. You mention elevated ALP levels. Elevated liver enzymes over a period of 13 years was what led to my celiac diagnosis. Within three months of going gluten free my liver enzymes normalized. I had elevated AST and ALT. The development of sensitivities to other food proteins is very common in the celiac population. Most common cross reactive foods are dairy and oats but eggs, soy and corn are also relatively common offenders. Lactose intolerance is also common in the celiac population because of damage to the SB lining.  Eggs when they are scrambled or fried give me a gut ache. But when I poach them, they do not. The steam and heat of poaching causes a hydrolysis process that alters the protein in the egg. They don't bother me in baked goods either so I assume the same process is at work. I bought a plastic poacher on Amazon to make poaching very easy. All this to say that many of the issues you describe could be caused by celiac disease. 
    • catnapt
      thank you so much for your detailed and extremely helpful reply!! I can say with absolute certainty that the less gluten containing products I've eaten over the past several years, the better I've felt.   I wasn't avoiding gluten, I was avoiding refined grains (and most processed foods) as well as anything that made me feel bad when I ate it. It's the same reason I gave up dairy and eggs- they make me feel ill.  I do have a bit of a sugar addiction lol so a lot of times I wasn't sure if it was the refined grains that I was eating - or the sugar. So from time to time I might have a cookie or something but I've learned how to make wonderful cookies and golden brownies with BEANS!! and no refined sugar - I use date paste instead. Pizza made me so ill- but I thought it was probably the cheese. I gave up pizza and haven't missed it. the one time I tried a slice I felt so bad I knew I'd never touch it again. I stopped eating wheat pasta at least 3 yrs ago- just didn't feel well after eating it. I tried chick pea pasta and a few others and discovered I like the brown rice pasta. I still don't eat a lot of pasta but it's nice for a change when I want something easy. TBH over the years I've wondered sometimes if I might be gluten intolerant but really believed it was not possible for me to have celiac disease. NOW I need to know for sure- because I'm in the middle of a long process of trying to find out why I have a high parathyroid level (NOT the thyroid- but rather the 4 glands that control the calcium balance in your body) I have had a hard time getting my vit D level up, my serum calcium has run on the low side of normal for many years... and now I am losing calcium from my bones and excreting it in my urine (some sort of renal calcium leak) Also have a high ALP since 2014. And now rapidly worsening bone density.  I still do not have a firm diagnosis. Could be secondary HPT (but secondary to what? we need to know) It could be early primary HPT. I am spilling calcium in my urine but is that caused by the high parathyroid hormone or is it the reason my PTH is high>? there are multiple feedback loops for this condition.    so I will keep eating the bread and some wheat germ that does not seem to bother me too much (it hasn't got enough gluten to use just wheat germ)    but I'm curious- if you don't have a strong reaction to a product- like me and wheat germ- does that mean it's ok to eat or is it still causing harm even if you don't have any obvious symptoms? I guess what you are saying about silent celiac makes it likely that you can have no symptoms and still have the harm... but geez! you'd think they'd come up with a way to test for this that didn't require you to consume something that makes you sick! I worry about the complications I've been reading about- different kinds of cancers etc. also wondering- are there degrees of celiac disease?  is there any correlation between symptoms and the amnt of damage to your intestines? I also need a firm diagnosis because I have an identical twin sister ... so if I have celiac, she has it too- or at least the genetic make up for having it. I did have a VERY major stress to my body in 2014-2016 time frame .. lost 50lbs in a short period of time and had severe symptoms from acute protracted withdrawal off an SSRI drug (that I'd been given an unethically high dose of, by a dr who has since lost his license)  Going off the drug was a good thing and in many ways my health improved dramatically- just losing 50lbs was helpful but I also went  off almost a dozen different medications, totally changed my diet and have been doing pretty well except for the past 3-4 yrs when the symptoms related to the parathyroid issue cropped up. It is likely that I had low vit D for some time and that caused me a lot of symptoms. The endo now tells me that low vit D can be caused by celiac disease so I need to know for sure! thank you for all that great and useful information!!! 
×
×
  • 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.