Confused by results

[Hexagonal]

I went to the doctor last week because I've been having swollen and red lips but wasn't sure what I was reacting to. My doctor rain a celiac panel because my parent has celiac. I didn't think it would be positive but my doctor says I have to see a GI because the results are concerning.

Gliadin IgA is 10 units and standard range is under 19. So this is negative.

Endomysial antibody IGA is 1:160 and standard is 1:10 so maybe slightly positive?

Tissue Transglut Ab is 17. Standard range is 0-3 so positive but celiacs normally have over 40.

Immunoglobulin A is 116mg, standard range is 68-408 but there is a note that it is elevated?

Are these weak results? Could I actually not have celiac? I don't think I have symptoms (but my friends and family think that I'm have symptoms and just don't recognize it).

[trents]

It is possible you are not a celiac but not likely. The positive tTG Ab is usually telltale for celiac disease. Your next diagnostic step would logically be an endoscopy with a biopsy of the lining of the small bowel to check for damage to the "villi".

What symptoms do your family and friends see you having? Many celiacs have few noticeable digestive symptoms in the early stages of villi damage. We call them "silent" celiacs. And digestive issues are only one category of celiac symptoms. Celiac disease can affect many body symptoms if left undiagnosed or unattended by a gluten free diet for some years.

[Hexagonal]

1 minute ago, trents said:

It is possible you are not a celiac but not likely. The positive tTG Ab is usually telltale for celiac disease. Your next diagnostic step would logically be an endoscopy with a biopsy of the lining of the small bowel to check for damage to the "villi".

What symptoms do your family and friends see you having? Many celiacs have few noticeable digestive symptoms in the early stages of villi damage. We call them "silent" celiacs. And digestive issues are only one category of celiac symptoms. Celiac disease can affect many body symptoms if left undiagnosed or unattended by a gluten free diet for some years.

My best friend noted that I throw up more often than she thinks is common. I tend to get nauseous and dizzy very often. 

[trents]

Nausea and vomiting are common with celiac disease when gluten is ingested. But it could also be unrelated and caused by many other things. Untreated celiac disease (treated by going gluten free) can lead to neurological problems. The dizziness could be tied to that but could also be an unrelated problem. If you will be going for further testing then you will need to be eating normal amounts of gluten. Going gluten free beforehand will sabotage the testing.

[Scott Adams]

To me the fact that your tTG results are over 5x the normal range, combined with the fact that one of your parents has celiac disease, strongly indicates that you have celiac disease. Even if your endoscopy results were negative it would make sense for you to avoid gluten (but don't go gluten-free until all tests are completed, and you need to eat gluten daily for two weeks before your biopsy).

[RMJ]

9 hours ago, Hexagonal said:

I went to the doctor last week because I've been having swollen and red lips but wasn't sure what I was reacting to. My doctor rain a celiac panel because my parent has celiac. I didn't think it would be positive but my doctor says I have to see a GI because the results are concerning.

Gliadin IgA is 10 units and standard range is under 19. So this is negative.

Endomysial antibody IGA is 1:160 and standard is 1:10 so maybe slightly positive?

Tissue Transglut Ab is 17. Standard range is 0-3 so positive but celiacs normally have over 40.

Immunoglobulin A is 116mg, standard range is 68-408 but there is a note that it is elevated?

Are these weak results? Could I actually not have celiac? I don't think I have symptoms (but my friends and family think that I'm have symptoms and just don't recognize it).

An endomysial antibody IGA of 1:160 is definitely positive, not slightly positive.   It is four dilutions away from the normal of 1:10.  This test is very specific for celiac disease.

Tissue Transglutaminase antibody of 17 with a standard range of 0-3 is also definitely positive - I don’t know where the “celiacs normally have over 40” comes from. The tests are designed so that above the cutoff most people have celiac and below the cutoff most people don’t.

Also, I don’t know what a “normal” amount of vomiting is.  For me, any vomiting would be very abnormal.  So that could definitely be a symptom.

With all that plus a celiac first degree relative, I think it is highly likely you have celiac disease.  If you want an endoscopy to prove it, you may as well eat all of your favorite gluten-filled foods beforehand (keep eating gluten until endoscopy is done) because you probably won’t be able to have them afterwards.

I didn’t think I had any symptoms, so mine was called silent celiac, but I did feel generally healthier and more energetic once I was completely gluten free.

 

[Patrick Clifford]

On 12/21/2021 at 7:18 PM, RMJ said:

An endomysial antibody IGA of 1:160 is definitely positive, not slightly positive.   It is four dilutions away from the normal of 1:10.  This test is very specific for celiac disease.

Tissue Transglutaminase antibody of 17 with a standard range of 0-3 is also definitely positive - I don’t know where the “celiacs normally have over 40” comes from. The tests are designed so that above the cutoff most people have celiac and below the cutoff most people don’t.

Also, I don’t know what a “normal” amount of vomiting is.  For me, any vomiting would be very abnormal.  So that could definitely be a symptom.

With all that plus a celiac first degree relative, I think it is highly likely you have celiac disease.  If you want an endoscopy to prove it, you may as well eat all of your favorite gluten-filled foods beforehand (keep eating gluten until endoscopy is done) because you probably won’t be able to have them afterwards.

I didn’t think I had any symptoms, so mine was called silent celiac, but I did feel generally healthier and more energetic once I was completely gluten free.

 

The blood tests are very confusing to me.  I was diagnosed as a celiac last February.  My "tissue transglutaminase AB, IGA" reading was over 100.   I went on a gluten free diet and my test result in end of June was 16.  My doctor and  I were very happy about that.   I kept on same diet and my last 3 tests in August, October and a week ago all have me over 100!  Unless my wife is secretly slipping gluten into my meals I have  no clue.   My diagnosis was based on symptoms, endoscopy, and blood results.   I am 72 years old.   Thoughts?   I go see the doctor again next week.       

[trents]

10 minutes ago, Patrick Clifford said:

The blood tests are very confusing to me.  I was diagnosed as a celiac last February.  My "tissue transglutaminase AB, IGA" reading was over 100.   I went on a gluten free diet and my test result in end of June was 16.  My doctor and  I were very happy about that.   I kept on same diet and my last 3 tests in August, October and a week ago all have me over 100!  Unless my wife is secretly slipping gluten into my meals I have  no clue.   My diagnosis was based on symptoms, endoscopy, and blood results.   I am 72 years old.   Thoughts?   I go see the doctor again next week.       

Most likely, you are getting some gluten in your food somewhere. Manufactured food products are always subject to formulation changes and your pantry needs to be rechecked. Every time you purchase mainstream processed food items the ingredient label needs to be checked. Don't assume that what was once gluten free is still gluten free. Also, are you still eating out? And have you checked all meds and supplements for gluten?

[the-sprawl]

Would they consider setting you up with a dietitian to go over your diet? It can be overwhelming at first to understand where all the hidden gluten can be.

Things like Rice Krispies which are made of rice actually have a barley coating to keep them crunchy so they are off limits. I had a supplement I was taking which claimed to be gluten free but was actually made from a malt syrup that should not have been allowed to claim being gluten free. The corn tortillas I was getting from Aldi just had a warning added to the label that they may contain trace amounts of gluten. It’s tough!

[trents]

This might help:

A dietician may be of help. Particularly one who is a celiac and has had to deal with the gluten free eating learning curve personally.

It took my wife and I a year or two to develop that "sixth sense" of what to avoid because of being something that might have gluten hidden in it. Unfortunately, some of the learning curve necessarily involves negative experiences. Yes, it can seem overwhelming at first.

Another factoid you need to be aware of is that some celiacs react to the protein casein in dairy like they do gluten and about 10% of celiacs react to the protein avenalin like they do gluten. These can cause villi blunting and throw inflammation antibodies as does gluten. So, some celiacs need to eliminate these two foods from their diet.

Cross contamination is a major source of glutening for many celiacs. So, you not only have to worry about gluten being an intentional ingredient in processed foods but about naturally gluten-free things that become contaminated with gluten containing foods in growing, transport, storage and manufacture. It isn't as simple as it first presents.

Edited December 29, 2021 by trents

[RMJ]

5 hours ago, Patrick Clifford said:

The blood tests are very confusing to me.  I was diagnosed as a celiac last February.  My "tissue transglutaminase AB, IGA" reading was over 100.   I went on a gluten free diet and my test result in end of June was 16.  My doctor and  I were very happy about that.   I kept on same diet and my last 3 tests in August, October and a week ago all have me over 100!  Unless my wife is secretly slipping gluten into my meals I have  no clue.   My diagnosis was based on symptoms, endoscopy, and blood results.   I am 72 years old.   Thoughts?   I go see the doctor again next week.       

Have your symptoms also come back?  Or is it just the blood tests that back up.

[Wheatwacked]

The outlier here is actually the one good test in June. Lab error is possible. How are your other labs, BP, homocysteine, lipids. Could your meds need adjusting? vitamin D plasma level and vitamin D intake?

t-Transglutaminase (tTG) IgA Optimal Result: 0 - 3 U/mL, or 0.00 - 100.00 ug/g.   https://healthmatters.io/understand-blood-test-results/t-transglutaminase-ttg-iga 

"If patients strictly adhere to a gluten-free diet, the unit value of IgA-anti-tTG should begin to decrease within 6 to 12 months of onset of dietary therapy."   https://neurology.testcatalog.org/show/TTGA.

Did the red lips improve with GFD? Regarding nausea and vomit is that new or changed? Could it be one of your medications. Even though you are gluten free, actually because, you may still be vitamin and mineral deficient in your diet. Most Americans do not get enough choline, folate and potassium in what they eat, and that malnutrition could be causing your symptoms. Try a bottle of geritol multivitamins. I was amazed. I'm 70. Consider that the vitamins and minerals are the tools you need and the protein, fat and carbohydrate are the raw materials. If you don't have the right tools, it doesn't matter how much raw material you have, the results are not good. All you do is store the materials until that tool becomes available.

[Patrick Clifford]

Thanks for everyone's suggestions.  I am seeing my doctor next week.  All of my other blood test results seem to be normal.  I will probably hook up with a dietitian after the appointment.  I am starting to think that the results in June of such a low reading may have been wrong.  My diet has not changed and find it hard to believe that some contamination with gluten would have number jump from 16 to over a 100.  My symptoms are still much better then before I went on my "gluten diet".  When the doctor first diagnosed me he noted that it is rare that someone over 70 becomes a celiac.  I informed him that I have had digestive issues my whole life and just chalked it up to an Irish stomach.   My siblings and children have been tested for celiac disease and they are all fine.      

[trents]

It is not rare for celiac disease to start at 70 years of age. You can develop it at any time but it does sound like in your particular case you may have developed it earlier.