Negative or weak postive test, however reduced gluen consumption

[emoxon]

I have just had a blood test for Coeliac and it looks as though it has come back negative.  Tissu transglutaminase IgA was 4.6 CU (with NHS saying below 19.9 is normal) and slightly high IgA of 3.81 g/L.

The thing is that I wasn't told by my doctor that I had to eat lots of gluten before, so up until the last 3-4 days before the blood test I hardly consumed any gluten. Also anecdotally I feel like my symptoms (severe bloating, tiredness, stomach pain, gas, diarrhoea, constipation) came back in those last few days. 

I guess it's very possible that i am just negative for coeliac, however I now feel that given the lower gluten intake that I can't really know anything for sure. Also with the GP now happy this is settled, getting tested again might be difficult.

The other part is that I have been struggling with these symptoms for as long as I can remember and I just want an answer. But this latest result leaves me feeling further than ever from one.

Any suggestions?

[trents]

Pigging out on gluten for a few days before the test would not compensate for a longer term low gluten or gluten free eating pattern before that. So, you have good reason to doubt the accuracy of the testing. However, you could also have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms with celiac disease but for which there is no test. Celiac disease must first be ruled out. But the fact that your symptoms increased during the several days of pigging out on gluten before the testing is strong evidence of one or the other.

[knitty kitty]

You should definitely ask your doctor to be retested because you were not told to eat sufficient gluten beforehand.

According to recent research, updates to the gluten challenge are being implemented.

Recommended intake of gluten should be increased to 10 grams of gluten per day for at least two weeks. Or longer.

While three grams of gluten will begin the immune response, ten grams of gluten is needed to get antibody levels up to where they can be measured in antibody tests in the bloodstream and changes can be seen in the small intestine.  

Keep in mind that there are different amounts of gluten in different kinds of bread and gluten containing foods.  Pizza crust and breads that are thick and chewy contain more gluten than things like cake and cookies.  

References:

https://www.beyondceliac.org/celiac-disease/the-gluten-challenge/

And...

Evaluating Responses to Gluten Challenge: A Randomized, Double-Blind, 2-Dose Gluten Challenge Trial

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7878429/?report=reader

 "In our study, limited changes in Vh:celiac disease (villi height vs crypt depth - aka damage to the small intestine)  following 14-day challenge with 3 g of gluten were observed, in accordance with Sarna et al.  While the 3 g dose was sufficient to initiate an immune response, as detected by several biomarkers such as IL-2, the 10 g dose was required for enteropathy within the study time frame. Based on our data, we would suggest that gluten challenge should be conducted over longer durations and/or using doses of gluten of ≥ 3 g/day to ensure sufficient histological change can be induced."
Keep us posted on your progress!

Edited November 17, 2023 by knitty kitty
Typo

[Scott Adams]

Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy:

Quote

"...in order to properly diagnose celiac disease based on serology and duodenal histology, doctors need patients to be on gluten-containing diets, even if they are causing symptoms, and this is called a "gluten challenge."

• Eat gluten prior to celiac disease blood tests: The amount and length of time can vary, but is somewhere between 2 slices of wheat bread daily for 6-8 weeks and 1/2 slice of wheat bread or 1 wheat cracker for 12 weeks 12 weeks;
• Eat gluten prior to the endoscopic biopsy procedure: 2 slices of wheat bread daily for at least 2 weeks;

and this recent study recommends 4-6 slices of wheat bread per day:

 

 

[emoxon]

Thanks for your helpful replies!

I will definitely try to do the coeliac challenge and then get retested or do a home test (since I suspect now I've tested negative getting my GP to test me again will be tricky). My symptoms have always felt inconsistent, yet I have never consistently eaten gluten and like I say the last month I maybe ate gluten 3-4 days, so probably way too little to show in a the blood work.

[knitty kitty]

The GP can't blame you if she doesn't know, and pass on, the proper protocol for gluten challenges before testing.  

Getting a proper Celiac Disease diagnosis can be delayed by ten years because doctors are not knowledgeable about testing prerequisites.  

Write a letter on paper to your doctor requesting another test due to the reasons above and sending a copy to the medical board.  Doctors need to learn, too.

Keep us posted on your progress.

[Wheatwacked]

9 hours ago, emoxon said:

Also anecdotally I feel like my symptoms (severe bloating, tiredness, stomach pain, gas, diarrhoea, constipation) came back in those last few days. 

9 hours ago, emoxon said:

with the GP now happy this is settled,

Who is in charge here?

[emoxon]

10 hours ago, Wheatwacked said:

Who is in charge here?

So true of course, it should be me. But speaking from experience it rarely is. Last year I asked to be tested for b12 as a previous blood test with a different doctor had found my levels to be low. They did the test and assured me the levels were normal, but when I checked it said that the wrong sample was supplied and it wasn't tested. Similarly as I said in the previous post I have had chronic stomach pain, gas, diarrhoea, constipation, for as long as I can remember, and I've been trying to get some answers for at least the last 2 decades. But every time I try they shrug and say "probably IBS" and I'm told to move on. Or worse like this week, they test, find nothing and say I must be imagining it. 

I really don't know if my issues are Coeliac or something else. I guess part of me wants it to be coeliac so that I have answer finally, because if not it would be back to square one. For years I tried to just ignore it, but I've lost count of the number of times I was at work almost doubled over in pain (normally after eating) and just trying to pretend it isn't there 😞

[knitty kitty]

@emoxon,

I understand how doctors can blame the patient when they, the doctors, are out of answers.  

I was told it was all in my head when I had severe nutritional deficiencies with undiagnosed CeD.  My blog has more details.  

Can you get a genetic test to look for the most common Celiac genes?  

Some people have the genes, but they don't have active Celiac Disease.  The genes need to be activated by a triggering event, like an illness or trauma.  Not all genes for Celiac Disease are known at this time, but they have identified lots of them.

But if you have the genes, and improvement on a gluten free diet, the genes can be assumed to have been activated and that you have CeD.  This is how I was finally diagnosed.  

Anemia, diabetes and nutritional deficiencies can cause false negatives on blood tests for Celiac Disease, like mine did.  

A genetic test is available through your doctor or there are home testing kits available. 

You're not alone.  There's many of us here that have been sick their whole lives and searching for answers.  We are cheering you on. 

Be encouraged! 

[eekunique]

On 11/18/2023 at 12:44 AM, Wheatwacked said:

Who is in charge here?

Unfortunately with the NHS, the doctors are. They don't see patients as customers because it all gets paid through our tax. You're almost made to feel privileged to get an appointment in the first place. And then you have to work around the GPs egos as they hate you doing your own research. Totally different experience if you go private - which is pretty unaffordable. 

[eekunique]

On 11/18/2023 at 11:17 AM, emoxon said:

chronic stomach pain, gas

Try taking out lactose. I have this and after years of pain I decided to try not eating lactose. It made an enormous difference. Lactose intolerance can be caused by coeliac disease because the enzyme to break it down is in the tips of small intestine. Lactose intolerance can also be caused by not having the gene to produce the enzyme. Either way the symptoms will be the same. 

[eekunique]

18 hours ago, knitty kitty said:

Can you get a genetic test to look for the most common Celiac genes? 

I'm from the UK and did 23andMe to discover I have 2 coeliac genes. It took about 2 months to get the result. Maybe you could eat gluten sufficiently during this time and if it comes back that you have genes for coeliac then ask the Dr again for another blood test.