Stopped eating gluten a week ago, still time to get tested?

[Olivercito]

Hi,

I'm 43 y.o., and not sure exactly when this all started, but for at least 2 years, probably longer, I've had episodes of intense fatigue that have come and gone, and grown longer, more intense and closer together, up to a point where I'm now pretty much always tired and feel weak, with once in a while a few good days. I've also lost quite a bit of weight, this happened gradually, but it's really starting to show now - all my pants are falling off! I've never had weight issues so only started weighing myself 3 weeks ago to monitor any change. I figure I've probably lost close to 20 lbs, despite eating normally.

Over the past year, and especially during a period of a few months during the winter, I experienced tingling, numbness, migrating pain in my limbs, and also had several spontaneous hematomas on my legs, feet and hands. The hematomas really freaked me out so I when to see my doctor.

At this point I've done a truckload of medical exams and seen 4-5 different doctors, and they're clueless as everything appears normal. They never figured out where the hematomas came from, same for the fatigue or weight loss. After seeing one more doctor with no result - the all seem uninterested - I started peering over my test results once again and realized I had a really borderline level of B12, which I figure could explain a lot of those symptoms, and can be a direct result of coeliac. This could also explain why my fatigue has gradually become worse since I've been depleting my B12 reserves.

Anyway, a week ago I totally stopped gluten - even oats just in case - and a few days ago started taking B12 supplements. I thought I was feeling a bit better a couple of days ago but today I'm super low on energy. I've read through the forums here that it can take quite a while before things get better. I've also read that I really should've gotten tested before stopping gluten.... 

I don't have any gastric issues, but I've noticed since stopping gluten that my stools seem more solid and less frequent.

Now my question is... is it still time to get tested? or is it too late already?

And if it's too late, what would be the best course of action?

A - start eating gluten again before I get tested - and if so how long do I need to wait?

B - just stick with the gluten-free + B12 regimen, which I figure can't hurt anyways and see in a few months if there's a clear improvement. I figure, if I feel much better 6 months from now after cutting all gluten, who cares if I'm diagnosed? What am I missing?

I figure if I'm not seeing any improvement after a few months I'll keep looking for other causes - another is Lyme disease, which is quite elusive as well, but can have some of the same symptoms.

Thanks for sharing your experiences!

Olivier

[trents]

Welcome to the forum, Olivercito!

The guidelines for pre testing gluten challenge are daily consumption of gluten in the equivalent amount of 2 slices of wheat bread for at least 6-8 weeks before serum antibody testing and at least two weeks before an endoscopy/biopsy of the small bowel. Even after one week of gluten free eating it is possible that your test results would be affected, especially if the the test results would have been borderline to begin with had you not already started eating gluten free. Another question would be how long would it take to get any testing done? For instance, if you went back on gluten now and your testing was not for another month then that might give valid results. If the testing happened within a few days, the results might not be affected significantly after your one week of gluten free eating, especially if the test numbers were significantly high in the positive range. So, you have some decisions to make about whether or not to proceed with gluten free eating and see if you improve significantly or to go back on gluten. Be aware that if you do proceed with your gluten free diet and are on it for a significant time period before deciding to get tested at some point, if you go back on gluten for testing you will likely experience more severe symptoms because your body has lost any tolerance of gluten it may have had.

[Olivercito]

Thanks I think I'll stick to gluten free for now and see how things go. If things get better and I eat gluten again in a few months, and like you said experience more severe symptoms, then I'll know for sure this was the problem.

What would be the advantage of getting tested in this case?

[trents]

There would be two advantages in getting tested later on:

1. The first is psychological. An official diagnosis helps many people stay on track with their gluten free diet. If there is doubt in your mind about whether or not you have a problem with gluten then it is easier to rationalize not being consistent.

2. The second is sociological. It might help your family and friends take your need to eat gluten-free more seriously if you have an official diagnosis. 

3. The third reason to get tested in the future is medical. If you don't have celiac disease, you might have non celiac gluten sensitivity. Testing for celiac disease, especially if you move on to the gold standard test of getting an endoscopy with a biopsy of the small intestinal lining, would help distinguish the two or alternatively, point you in an entirely different direction than gluten being the issue. So, testing would provide some additional diagnostic clarity.

[Scott Adams]

The one disadvantage to getting a diagnosis would be that both life insurance, and possibly private health insurance, could get more expensive and harder to obtain. I faced this issue with my life insurance, and now am facing it again as my policy period will come to an end.