Has anyone ever had TTG result of zero and then later been diagnosed as coeliac?

[Skellig]

I have the Irish version of medicare. I just got tested and my TTG was zero. I had been on the gluten challenge and eating six slices of normal white bread for six weeks (six slices as I am a large man). As this was so low (zero) the GP feels there is no way I have coeliac disease and there is no point doing further tests. I must say I see the logic in what she said, and I know it is public money and she does not want to waste it.  She said I was non coeliac gluten intolerant and was nice about it. She said I do not have to be very careful about gluten. However I think my symptoms are very consistent with coeliac.

In January I had a health issue and I googled for a solution and the keto diet came up. Basically meat, dairy and mostly above ground vegetables. I said I would give it a try. About three days in my body changed completely. Here is a list of symptoms I had had:

Mild lactose intolerance
Tinnitus
Occasional diarrhea
Poorly formed, light coloured, smelly stool
Muscle tension
Joint pain
tendonitis
Tiredness
Eczema
Dental enamel defects (could be due to being a premature birth)    
Sinusitis
Brittle nails with white spots
Bloating
Brain fog
Silent reflux
 
Symptoms I had previously had, but were not present in January:
Underweight as a child
Iron deficiency as a child
Acid reflux as a child
B12 deficiency (my diet was very low in B12 at this time)
Cystic acne
 
Within three days many of the symptoms were gone, some took a little longer and only the silent reflux did not resolve. I was not even aware of some of them (brain fog),and I was not aware I had given up gluten, so it could not really be psychosomatic. I would have thought that the smelly stool could only be coeliac as the flattened villi cannot absorb the fat which is what smells (this is what I suppose: I am not a doctor). In the internet I have not read of NCGI people having lactose intolerance nor having light, smelly stools. Many of my symptoms returned soon after starting on gluten but the mild stool issue took four weeks. Also, genetically I am 100% west of Ireland (area with high coeliac) and in my family history there is Crohn’s disease and T1 diabetes and someone I think might have had coeliac but is dead now.

I do not know of anyone where I live who is not coeliac and does not eat gluten, and I do not think people would be considerate to that. On the other hand, people here seem quite understanding of coeliac disease. I do not think colleagues, employers etc. would react well to me if I was NCGI. Also, if you are not coeliac, they will not give you gluten free food in nursing homes and hospitals. If I am coeliac, I would like to be diagnosed with it now: it would make my life much easier. 

I do not know if I have the confidence to ask the original GP for a print out of the results, and if I did, she might not give them to me.

What is the experience of people here? Has anyone ever had TTG result of zero and then later been diagnosed with coeliac or heard of that happening? Is it worth my while going private and getting the full panel of six bloods done or getting a private endoscope and biopsy? I do not have loads of money. I appreciate all replies.
 

[trents]

Welcome to the forum Skellig! 

Unfortunately, your doctor ordered only the tTG-IGA antibody test. Some people who actually have celiac disease have atypical immune system responses and are negative for tTG-IGA but will be positive for other antibody tests. Also, low total IGA can drive tTG-IGA results downward. 

Another option would be to order a home test celiac antibody test kit from a company like imaware. https://www.imaware.health/at-home-blood-test/celiac-disease-screening

If the home test produces positive results you could use it as leverage to talk your doctor into doing additional testing for an official diagnosis. 

[RMJ]

In the US it is unusual to have a result of zero.  Very low results are usually listed as less than some number (for example, <2).  I would at least ask the doctor for a printout of the results.  

[Skellig]

10 hours ago, Skellig said:

I have the Irish version of medicare. I just got tested and my TTG was zero. I had been on the gluten challenge and eating six slices of normal white bread for six weeks (six slices as I am a large man). As this was so low (zero) the GP feels there is no way I have coeliac disease and there is no point doing further tests. I must say I see the logic in what she said, and I know it is public money and she does not want to waste it.  She said I was non coeliac gluten intolerant and was nice about it. She said I do not have to be very careful about gluten. However I think my symptoms are very consistent with coeliac.

In January I had a health issue and I googled for a solution and the keto diet came up. Basically meat, dairy and mostly above ground vegetables. I said I would give it a try. About three days in my body changed completely. Here is a list of symptoms I had had:

Mild lactose intolerance
Tinnitus
Occasional diarrhea
Poorly formed, light coloured, smelly stool
Muscle tension
Joint pain
tendonitis
Tiredness
Eczema
Dental enamel defects (could be due to being a premature birth)    
Sinusitis
Brittle nails with white spots
Bloating
Brain fog
Silent reflux
 
Symptoms I had previously had, but were not present in January:
Underweight as a child
Iron deficiency as a child
Acid reflux as a child
B12 deficiency (my diet was very low in B12 at this time)
Cystic acne
 
Within three days many of the symptoms were gone, some took a little longer and only the silent reflux did not resolve. I was not even aware of some of them (brain fog),and I was not aware I had given up gluten, so it could not really be psychosomatic. I would have thought that the smelly stool could only be coeliac as the flattened villi cannot absorb the fat which is what smells (this is what I suppose: I am not a doctor). In the internet I have not read of NCGI people having lactose intolerance nor having light, smelly stools. Many of my symptoms returned soon after starting on gluten but the mild stool issue took four weeks. Also, genetically I am 100% west of Ireland (area with high coeliac) and in my family history there is Crohn’s disease and T1 diabetes and someone I think might have had coeliac but is dead now.

I do not know of anyone where I live who is not coeliac and does not eat gluten, and I do not think people would be considerate to that. On the other hand, people here seem quite understanding of coeliac disease. I do not think colleagues, employers etc. would react well to me if I was NCGI. Also, if you are not coeliac, they will not give you gluten free food in nursing homes and hospitals. If I am coeliac, I would like to be diagnosed with it now: it would make my life much easier. 

I do not know if I have the confidence to ask the original GP for a print out of the results, and if I did, she might not give them to me.

What is the experience of people here? Has anyone ever had TTG result of zero and then later been diagnosed with coeliac or heard of that happening? Is it worth my while going private and getting the full panel of six bloods done or getting a private endoscope and biopsy? I do not have loads of money. I appreciate all replies.
 

Thanks a lot for the replies.

Quote

Another option would be to order a home test celiac antibody test kit from a company like imaware.

Trents, that test is pretty expensive. It may not cost me much more just to do the tests with a private doctor. I guess I will have to look into it.

Quote

'I would at least ask the doctor for a printout of the results'

RMJ, I respect what you are saying. However, I am pretty sure if I ask for the print out they will say yes, but I will never get it; they will just say they are busy with covid (which they are). Just to get through on the phone takes days. The receptionist is my neighbour. If I go in and demand it, it will build a bad relationship, and I will ‘get talked about’. These are complications of being in a rural area. If you make a scene in a store here, people remember it for years and start saying ‘who does he think he is?’. If I am going to publicly go gluten free, I do not want people saying ‘who does he think he is?’ before I reject their offer to buy me a pint of beer, or give me a piece of their home made soda bread. Maybe if the doctor was in the city, I could go in and demand the print out.  

Could I be IGA deficient? Does anyone here have any experience with this? Surely the doctor would have made me aware of this. I am having trouble getting my head around all the sciencey stuff.

Btw. I forgot to mention mouth sores as a symptom.

[trents]

4 hours ago, Skellig said:

Thanks a lot for the replies.

Trents, that test is pretty expensive. It may not cost me much more just to do the tests with a private doctor. I guess I will have to look into it.

RMJ, I respect what you are saying. However, I am pretty sure if I ask for the print out they will say yes, but I will never get it; they will just say they are busy with covid (which they are). Just to get through on the phone takes days. The receptionist is my neighbour. If I go in and demand it, it will build a bad relationship, and I will ‘get talked about’. These are complications of being in a rural area. If you make a scene in a store here, people remember it for years and start saying ‘who does he think he is?’. If I am going to publicly go gluten free, I do not want people saying ‘who does he think he is?’ before I reject their offer to buy me a pint of beer, or give me a piece of their home made soda bread. Maybe if the doctor was in the city, I could go in and demand the print out.  

Could I be IGA deficient? Does anyone here have any experience with this? Surely the doctor would have made me aware of this. I am having trouble getting my head around all the sciencey stuff.

Btw. I forgot to mention mouth sores as a symptom.

But how different would it be if you just assumed you have celiac disease and refused your neighbor's offer of beer and soda bread? Would you refuse their offer if you did know by testing that you had celiac disease? For the sake of your own health, I hope you would. And if you have NCGS that doesn't necessarily mean you would escape the long term health consequences of continuing to consume gluten. It just may mean the gluten is causing damage in other parts of your body besides the lining of the small bowel.

[Wheatwacked]

Hi @Skellig welcomt to the forum.

Given your dramatic improvement on GFD you either have Celiac Disease or Non Celiac Gluten Sensitivity. 1% of the world is diagnosed Celiac, 10% have NCGS.  NCGS is diagnosed by eliminating Celiac and then showing improverment on GFD. What do you suppose your doctors reaction would be if you told her that even Irish Setters get Celiac Disease? No one is sure yet if NCGS and Celiac are different variations of Gluten Sensitivity or completely different but as far as treatment they are the same. No wheat, barley or rye and and pay attention to vitamin and mineral intakes. Blood plasma Vitamin D level might be the difference.  NCGS does not seem to have the autoimmune aspect as seen by biopsy and blood test results but does share many other symptoms. 

High prevalence of vitamin D insufficiency in healthy Irish adults "

Methods: Serum 25-hydroxyvitamin D was measured by radioimmunoassay in 70 healthy Irish adults working in South Dublin.Results: Overall, half of the group (51%) had vitamin D insufficiency; this was more pronounced in wintertime, with prevalence rising to 58%. Winter was a significant negative predictor of serum 25-OH D levels. Sixteen percent of the participants reported taking a vitamin D-containing supplement (multivitamin), but this did not significantly influence the serum 25-OH D levels."

Possible Role of Vitamin D in Celiac Disease Onset

The Irish and Celiac Disease EP062

Peer pressute This series of artcles may help you. 

4 hours ago, Skellig said:

If I am going to publicly go gluten free, I do not want people saying ‘who does he think he is?’

 

[knitty kitty]

@Skellig,

Another test your doctor might agree to run, or available through the mail, is a genetic test.  

You may want to have your B12 and iron (ferritin) levels checked as well, especially since you've had it in the past.  

Sometimes anemia can affect antibody production.  So can diabetes.  

 

[Skellig]

There are a number of reasons why my future gluten free life will be easier if I am diagnosed coeliac. One is financially.  I will be entitled to a tax credit or income supplement of 500 to 1,000 euros per year. I may live for another 40 years, so that would be 20,000 to 40,000. A lot of money.

Awareness of coeliac disease here is high. Awareness of NCGS is not. I have never met nor heard of a NCGS person, neither have I seen it in the media. Weatwacked, I did find those articles interesting. However, my issue with NCGS will be in the wider community and work, not in the family or with close friends. This is a small rural area. Until very recently divorced people were shunned. Communities like this are looking for someone to exclude. People who get excluded are people with ‘big ideas’ or ‘notions’. I do not envisage having problems if I have coeliac, but I do envisage having problems if I am NCGS.

Knitty kitty, thanks for the advice on the blood tests. However, I think the genetic test might a bit expensive for me.

[trents]

I think we've pretty much covered all the options. Now you have to decide which direction to go.

[Skellig]

I guess you're right, trents.