Advice On Introducing Gluten Back Into Diet For Testing

[frankib87]

Hi everyone, this is going to be quite a long post, so thank you in advance if you read it and reply - I'd really appreciate any advice that anybody can give me.

 

So, for about the last 14 months or so, I've been experiencing symptoms that strongly suggest a gluten intolerance/celiac disease. I'm 27, female and have never had any indication that I may have a problem with gluten or wheat before now. There's no history of this in my family. Anyway, I started experiencing really bad stomach pains and severe diarrhea if ever I ate any wheat-containing products, particularly if I ate them in large quantities. So for example, if I ate pizza for dinner one night, by the next day I'd be pretty much glued to the toilet (not pleasant!) Anyway, my first reaction was to completely cut out gluten from my diet, which improved everything pretty much straight away.

 

I went to my GP to ask about having some tests to find out whether it was just a gluten intolerance or something more serious. My GP referred me for blood tests and I was also told that in order for the blood tests to be accurate, I would need to introduce gluten back into my diet. I did this, however, looking back, I probably didn't eat as much of it as I should have - some of the information I've read suggests that you should be eating around 4 slices of bread per day, when I was probably eating more like one or two and completely missing it out on occasional days if my symptoms were really bad. Anyway, I had the blood tests, which came back negative for celiac disease, however they also tested my b12 and vitamin D levels, which were both quite low. I was then referred by my GP to a gastroenterologist, who sent me for more blood tests, (I'm not quite sure which tests these were - I had to have more blood taken and also give a stool sample). After having all of these tests I then had an appointment with the gastro, who said that as my celiac test had come back negative, it was "highly unlikely" that I had celiac disease, however, because my b12 levels were low, he wanted me to have some further tests done and referred me to have both a gastroscopy and colonoscopy for biopsies.

 

I should say at this point I was fairly confident that I didn't have celiac disease because of what the doctor had said and also because I discovered that I seemed to be ok if I ate small amounts of gluten, for example, if someone brought a packet of cookies into the office, I'd maybe have one or two, and generally I'd be fine.

 

Anyway, I had the two scopes, both of which I had been dreading in the weeks leading up to them - I've spent very little time in hospital and the horror stories I read about gastroscopies where people were forcibly held down while a camera was shoved down their throat literally had me in tears on several occasions. I had both the tests done, which were unpleasant, but not as bad as I thought they'd be. The tests were done just before Christmas and I ended up having to wait quite a long time for my next appointment with the gastro doctor.

 

While I was waiting for my appointment to be scheduled, I received results from the second batch of blood tests I'd had (no idea why it took so long for these to come through) and they said that because of my TTG levels, the original blood test I'd had for celiac disease could have been a false negative. I don't understand why my TTG levels weren't tested at the same time as the celiac test if they can have an effect on the results!

 

So I had my follow up appointment with the gastro, I saw a different doctor on this occasion and he said that everything looked normal on my biopsies and that what I was experiencing was most likely just IBS. He was fairly dismissive about the low b12 levels and just said I should try and eat more meat... He asked how my health was currently and I said that as long as I eat little to no gluten, I'm generally fine. At that point he asked me what I had been eating prior to the biopsies being taken and I said that I mostly ate a gluten free diet, with the occasional small "treat" such as a cookie etc. He told me that I should have been eating a lot more gluten before having the biopsies and if I wanted a definite diagnosis of whether or not I was celiac, I would need to have the gastroscopy again. At this point I broke down in his office - partly from being furious that the first doctor had not told me this and I had gone through all of that stress of having those two procedures, and actually going through the unpleasantness of them for nothing. Also the idea of having to eat that much wheat again for several weeks was just impossible to me - I got so ill from it last time and it completely disrupted my life - I've had to miss days at work, cancel social occasions, not to mention it's painful and embarrassing! After seeing my distress, the doctor told me that I could probably get away with eating wheat for just 2 weeks rather than 6, as long as I ate enough of it. Everything I've read online suggests that it has to be a minimum of 6 weeks for the test results to be accurate but I just don't see how I can do 6 weeks of being horrendously ill! If I can just do 2 weeks instead, I'd much rather do that, but I obviously want to make sure that the test results will definitely be correct this time.

 

Does anybody else have any advice on how long I should be eating gluten for prior to having another gastroscopy? The prospect of 6 weeks of hideous diarrhea is just unbearable! If I do have to do the full 6 weeks, does anyone have any recommendations of what I can do to help reduce the symptoms?

 

Any advice would be hugely appreciated, I just want to know once and for all what's wrong with me! Thank you if you've read this all the way to the end!

[nvsmom]

Oh dear, you've been through a lot.    Let's get this sorted...

 

I am guessing that your doctor actually said that you are IgA (Immunoglobulin A) deficient, which happens in about 1 in 20 celiacs.  I consider to almost be a sign of celiac disease because it is so much more common in celiacs than in the rest of the population.

 

Anyways, if you do not make enough IgA then the celiac tests that are based in IgA will give a negative result whether you are a celiac or not, this includes the tTG IgA (tissue transglutaminase), DGP IgA (deaminated gliadin peptides), EMA IgA (endomysial antibodies), and the older and less reliable AGA IgA (anti-gliadin antibodies).  Someone who is deficient in IgA would need to rely on the endoscopic biopsy or the tTG IgG, DGP IgG, and EMA IgG tests for a diagnosis; these tests use the immunoglobulin G (IgG) part of the immune system.

 

Blood tests generally need 8-12 weeks of 1-2 slices of bread per day (or equivalent) to be accurate.  The endoscopic biopsy needs 2-4 weeks of a similar amount of gluten and at least 6 samples taken to increase the odds of detecting damage if it is patchy.  I have seen reports that show that most celiacs will begin to have raised levels of autoantibodies after 2 weeks of eating gluten (especially if a lot of gluten like 4 slices per day) but the autoantibody levels may not get high enough to be positive (if you were starting from very low)  on blood tests. A longer gluten challenge is always better for testing but sometimes celiacs just can't handle it for that long.

 

If you are having another endoscopy, try to eat gluten for 4 weeks.  If you do two weeks you should probably eat more than 1-2 slices per day.  6 weeks is long for a gluten challenge for an endoscopy, but short for blood tests.  I doubt you need to go that long for the endoscopy, but I can't be sure.  You may want to discus it with the doctor.

 

If you post your blood test results here we can help you interpret them.  The same goes for the biopsy reports.

 

Hang in there.