Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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
      127,833
    • Most Online (within 30 mins)
      7,748

    Lucy20
    Newest Member
    Lucy20
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.4k

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)

    • There are no registered users currently online

  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • knitty kitty
      @Manaan2,  I'm so happy to hear you're going to try thiamine and magnesium!  Do let us know the results!   You may want to add a B 50 Complex with two meals of the day to help boost absorption.  Thiamine interacts with each of the other B vitamins which are all water soluble.   When supplementing magnesium, make sure to get sufficient calcium.  Calcium and magnesium need to be kept in balance.  If you choose a calcium supplement, take two hours apart from magnesium as they compete for absorption.  Take Calcium with Vitamin D.  Vitamin D helps calm the immune system.   For pain, I use a combination of thiamine, B12 Cobalamine, and Pyridoxine B6.  These three vitamins together have analgesic effects.  My preferred brand is "GSG 12X Takeda ALINAMIN EX Plus Vitamin B1 B6 B12 Health Supplementary from Japan 120 Tablets".  Alinamin is another form of thiamine.  It really is excellent at relieving my back pain from crushed vertebrae without side effects and no grogginess.   Look into the low histamine version of the Autoimmune Protocol Duet (Dr. Sarah Ballentyne, a Celiac herself, developed it.)  It really helps heal the intestines, too.  It's like a vacation for the digestive system.  Add foods back gradually over several weeks after feeling better.   I'm so happy to have pointed the way on your journey!  Let us know how the journey progresses! P. S. Add a Potassium supplement, too.  Potassium is another electrolyte, like magnessium, that we need.
    • Manaan2
      @knitty kitty I can't thank you enough!  My husband and I already started looking into those supplements.  We definitely plan to give it a try.  We've been against the Miralax since it was originally advised by PCP, but because of the level of pain she experienced on a daily basis, we decided to try it.  We've made many attempts to gradually decrease but due to her pain and related symptoms, we've kept her on it while trying all sorts of other dietary adjustments pre and post diagnosis specific to food; so far none of those efforts have made a significant difference.  I will definitely share how she's doing along the way!
    • BIg Nodge
      Hi, I have recently embarked on the gluten-free journey. I have what to me seems like a somewhat confusing set of test results and symptoms. I have been impressed by the accumulated knowledge and thoughtfulness as I browse this forum, so I figured I'd make a post to see if anyone can offer any insight. I know there are many posts like this from new users, so I have tried to do my baseline research first and not ask super obvious questions.  I'm 43, overall very healthy. No history of gluten sensitivity or really any of the classic GI symptoms. About three years ago I started to experience intermittent bouts of fatigue, chills/cold intolerance, and shortness of breath/air hunger (sometimes feels like a hollowness in my chest, hard to describe). The symptoms over time have become fairly significant, though not debilitating, I am able to exercise regularly and am fairly physically active, continue to perform well at work. But for example I have gone from someone who consistently ran hot, was always cranking the a/c, to someone who wears a down vest inside at work in winter and get chills if the a/c even blows on me in summer. I get tired and lose energy even when getting decent amounts of sleep, and have to have my wife take over on long drives that I could previously handle with no problems. More generally when I am experiencing these symptoms they seem to crowd out space in my mind for focusing on my family, my hobbies/activities etc, I sort of withdraw into myself.   I happened to be experiencing these symptoms during an annual physical with my PCP a few years ago, he observed post nasal drip and suggested it was allergies and that I treat it with claritin. At first it seemed to respond to claritin (though not zyrtex), but over time I became unsatisfied with that answer. There didn't seem to be any seasonal rhyme or reason to my symptoms, and I felt like I was on an endless loop of taking claritin, then stopping, not being sure if it was even making a difference. I did eventually get allergy tests and found modest allergies to dust and pollen, which didn't feel like a smoking gun.  I then started seeing a natural medicine doctor who was much more willing to explore my symptoms via testing. The first thing that came back abnormal was elevated thyroid peroxidase antibodies/TPOs, 137 IU/mL vs a reference range of <9. At the same time my thyroid panel showed normal thyroid hormone levels. So it appears my immune system is attacking my thyroid even though it is working fine. I got a thyroid ultrasound at the time, it was clear, but with some abnormalities such that they suggested I get is scanned again in a year. These are certainly risk factors for a thyroid autoimmune disease, though my thyroid seems to be working fine for now.  From here my doctor considered celiac due to the murky thyroid/celiac links, so we did a panel. Results were as follows: TT IGA <1 U/ml, TT IGG <1 U/ml, deamidated gliadin IGA 24.6 U/ml, deamidated gliadin IGG <1 U/ml, IGAs 170 mg/dL. Readings greater than 15 considered high by my lab for the first four, my IGAs are within reference range. So basically just the deamidated IGA popped, but my IGAs are normal. I also notice on the tests that my thyroglobulin was high, 86.7 ng/ml vs a range of 2.8 - 40.9.  My doctor suggested that it certainly wasn't conclusive for celiac, but it was possible, and likely that I have some sort of gluten sensitivity. She suggested going gluten free and seeing how I felt as opposed to doing a biopsy. The best theory I can come up with is perhaps I am a silent celiac or just have a gluten sensitivity that doesn't produce immediate GI symptoms, but is still doing damage and over time has caused leaky gut. So now gluten is getting into my blood, and my immune system is attacking it but also mistakingly attacking my thyroid.  So that's what I did, went gluten free in October. It's been about four months, and I am really not feeling any difference. I still get the same symptoms that come and go. My bowel movements may be a bit more regular, but it was never a major issue before so I would consider that a minor improvement. I know that it can take a while to see improvements, and I am going to remain gluten-free and see how I feel. But I am definitely questioning whether I really understand what is going on, and am open to any thoughts or suggestions from the forum. Sometimes I wish I just went ahead with the biopsy before going gluten-free. While I would certainly be down to start drinking IPAs again ahead of a biopsy, you know, for science, I feel like at this point I would be throwing away four months of work and am better off staying the course and seeing what happens. But I'm really not sure.  I know there is a lot of thyroid knowledge on these boards, along with the celiac expertise, so I'm curious if this resonates with anyone's experience. And I'm interested in what sort of timelines people have experienced in terms of feeling improvements for some of these non-GI symptoms like chills, SOB, brain fog etc. Thanks in advance. 
    • cameo674
      Does it taste like black licorice?  It said it was chewable.  I do not like that flavor.     Since the burn at the back of my throat is there everyday, I usually only take something when it is unbearable and keeping me from ADL especially sleep.  
    • Scott Adams
      Your concerns about Nando's cross-contamination practices are valid and important for the celiac community. It's disappointing that Nando's does not have stricter protocols for children's portions, especially given the risk of cross-contact with gluten-containing items like garlic bread. Cooking gluten-free items on shared surfaces, even if cleaned, is not safe for individuals with celiac disease, as even trace amounts of gluten can cause harm. While the adult butterfly chicken may be a safer option, the inconsistency in practices for children's meals is concerning. It's frustrating that Nando's headquarters did not take responsibility, but sharing your experience raises awareness and may encourage them to improve their protocols. Consider reaching out to celiac advocacy organizations to amplify your concerns and push for better standards. Always double-check with staff and emphasize the importance of avoiding cross-contamination when dining out.
×
×
  • Create New...