Newbie with Celiac / NCGS symptoms

[SEQ]

Hello everyone, first time poster here looking for a little advice on my situation.

I (32 year old male) have been experiencing a lot of different health issues for a long time now - I can't pinpoint when anything in particular started, but we are talking a minimum of 5 years for most symptoms, some much longer. I have been ploughing ahead for a long time, not actively trying to resolve anything, probably assuming that lots of things were normal - or at least, normal for me

Things kind of came to a head a couple of weeks ago when I consumed a huge amount of gluten in one day and spent the next three days paying a heavy price (pasta for lunch, pasta as a snack, pasta for dinner and lots of beer). I have never expelled so much water in my life and my pants were not safe for at least two days. The exacerbation of my symptoms got me thinking and trying to join dots.

Overall, my symptoms include:

• Weight loss - I have always been very skinny, but I realised I have lost 4kg over the last year. I am 6'1" and weigh 52kg, so very underweight;
• Chronic diarrhoea - I haven't had a firm bowel movement in years;
• Abdominal pains - sometimes in the morning straight after waking up, I get pain and severe urgency to "go";
• Low appetite - I feel hungry quite often throughout the day, but as soon as I start eating, I begin to feel full - eating becomes a gruelling challenge;
• Severe brain fog - this has gotten worse and worse over the last few years and has become very debilitating and concerning;
• Low mood, depression, anxiety;
• Fatigue, low energy;
• Feeling cold - this isn't all the time, but sometimes and for no reason - I live in a tropical climate without any A/C;
• Shortness of breath and palpitations - this is a recent thing I have noticed occasionally after eating;
• Skin issues - like psoriasis, I shed large flakes of skin from my scalp, face, chest and sometimes my elbows;
• Itchiness - I have experienced this my whole life;
• Joint pain - mainly my knees.

I have also been suffering from Eustachian Tube Dysfunction and tinnitus in my left ear for the last six months, which is driving me nuts. I have been seeing an ENT doctor for this with no success. I would say this is unrelated if it wasn't for the fact that I had my head X-rayed last week (for a dental procedure) and I could see the inflammation on my left side that is firmly squashing the tube shut - I am not sure if inflammation generally could be attributed to gluten sensitivity.

When I started thinking about gluten a couple of weeks ago, I decided to look into testing. Where I live, it seems impossible to get a full celiac panel done, but I managed to find a lab that would test for:

• Tissue Transglutaminase (tTG)
• Gliadin-analogue fusion peptide (GAF-3X)
• Serum/Plasma control IgA (Co A)

I figured that I wanted to try going gluten free anyway to see if my symptoms alleviated. I was not (and am not) concerned about getting a diagnosis, and I am open to the possibility that I do not have Celiac or NCGS. I am just determined to get better and feel better, like I used to, and will do whatever it takes. So I booked the blood test, which I only had to wait a week for, so that I could start going gluten-free ASAP and to get an idea if it is likely to be Celiac or NCGS. I figured that, if it was NCGS, I might not have to worry about cross-contamination quite as much as with Celiac - I don't know if that is true or not, but it was my thought process. I did not 'load up' on gluten in the run up, but just continued eating normal amounts of bread daily, on the basis that I had never followed a gluten-free diet before so there should not be any need to do the "gluten challenge".

The blood results came back the other day, and I was disappointed - not because I tested negative for tTG and GAF-3X, but because they did not carry out the IgA control test. I feel like I have paid a decent amount of money for something that, to me, seems completely worthless. I would have been happy with two negatives and a positive control test - I would have continued the gluten-free diet and, if symptoms alleviated, worked on the assumption that it is NCGS. But now I don't know.

I am now almost one week on a gluten-free diet. I do not want to call anything this early on in the experiment, but, over the last few days my GI issues have largely subsided. Yesterday I had a firm poo for the first time in years and that was strangely... exciting? Certainly novel, for me. Whilst before I was on the toilet at least four times a day completely emptying myself, now I just seem to go once like normal people. I am going to keep going with this gluten-free experiment and I am praying that more symptoms subside. My quality of life is so poor, and it pains me to think that this happening whilst I am in my prime.

I am hoping I can get some advice in relation to the clinic that did my blood test. They are extremely reluctant to acknowledge that they did anything wrong by not carrying out the control test. I have asked them if the lab has enough of the sample left to carry out the control, but they haven't given me an answer. I think they want to either make me go away, or sign me up to pay for more tests. What should I do? I don't want to stop my gluten-free trial now to do more tests, given that I am seeing early signs of promise. What are the odds of the two test results being a false negative? How common is total IgA deficiency? Where do I go from here?

[trents]

IGA deficiency is a lot more common than we used to think but I can't give you a number. Doctors used to believe it only happened in children but we know better now. Every doctor should order, at the very minimum, total IGA and tTG-IGA. It may be true that you don't have to worry as much about cross contamination if you have NCGS but that is not a given.

By the way, welcome to the forum, @SEQ!

Edited September 15 by trents

[SEQ]

Thanks @trents. I have exchanged some messages with the clinic today, and they are saying that the reason there is no result for the total IgA levels is because I don't have any. Apparently a negative result means that it does not appear as a line on the results at all. I am not sure I buy this, but it is what they are telling me. I am leaning more towards the theory that they didn't test it in the first place.

But, working on the basis that the test result was zero, I asked what the next steps would be, given that I apparently have no IgA antibodies. They have asked if I now want to have a tTG-IgG and a DGP-IgG test. Is this really the next step if I have no total IgA?

[trents]

Yes, an IgG panel is the logical next step. However, you would still need to be consuming normal amounts of gluten to ensure valid IgG testing. Since it has only been a week that you have been off gluten, there is still likely time to restore antibodies to detectable levels before the blood draw. IgG antibody tests are not quite as specific for celiac disease as are the IGA tests but they are certainly valuable in the case of IGA deficiency. They also seem to have a little more "staying power" in the sense of detecting celiac disease in the case of those who may have already started a gluten-free diet as long as they haven't been on it for an extended period of time. But don't rely on that. Get back on gluten if you can possibly endure it if you intend to go forward with IgG testing.

This might be helpful: 

 

Edited September 15 by trents

[Scott Adams]

I would pressure the lab to do the IgA control test for free so that you won't write a poor review about their testing services. You could get this done at any time, whether or not you are gluten-free, however, the celiac disease Tissue Transglutaminase tTG-IgA test must be done after you've been eating lots of gluten for around 6 weeks. This way you could salvage the results of your tTG-IgA test, as long as you were eating lots of gluten beforehand.