Trying To Decide Whether To Be Tested For Coeliac Disease

[CuriousB]

Hello!

 

New member here, who could do with some advice, please. 

 

I am trying to decide whether to be tested for coeliac disease. My husband is convinced that I have it, but I'm not so sure, and don't want to go through the testing process for nothing.

 

A bit of background: I'm now 44, and since my early twenties I have suffered with symptoms of IBS: stomach pain; bloating and distension; wind; nausea; alternating diarrhoea and constipation (although mostly the former).

 

In more recent years, I've also felt unaccountably fatigued, to the point where I've fallen asleep at my desk at work on occasion (my doctor did blood tests, but could find no basis for this), had recurrent tingling in my hands and feet, and ringing in my ears.

 

I was able to work out some years ago (through elimination) that my gut symptoms were brought on by consuming milk or onions. However, despite cutting out these known problem foods, over the past year or two my IBS became progressively worse (more days than not needing to take Immodium to control the diarrhoea). In the end, virtually the only thing I was consuming was bread, thinking that it couldn't possibly be harming me, but still without relief from my gut symptoms, feeling nauseous every time I ate and with a sharp, stabbing pain in my stomach.

 

Finally, a friend (with gluten intolerance) suggested I try cutting out gluten: within three days I felt better than I had in years. The stomach pain and nausea subsided, and over the course of the next month my gut finally became 'normal' (unless I slip up and eat milk or onions). I've been an (almost) gluten-free zone for three months now.

 

As a bonus, the tingling in my hands and feet has stopped, and the keratosis pilaris that I've had on the backs of my arms all my adult life has all but gone. I still feel quite fatigued though!

 

So, I'm convinced that I am probably intolerant to gluten, at the very least, but could my problem be as serious as coeliac disease? I'm reluctant to undergo tests, as I really don't want to make myself ill again by eating gluten for the required 6 weeks!

 

But, would anyone say it was worthwhile for me to do so?

[NatureChick]

Getting tested for celiac is primarily a blood test which is also the first step in the process and isn't all that expensive. You don't have to have an endoscopy to get a positive diagnosis. But you do have to be consuming gluten for tests to work.

I personally abhor how some people on forums like this pressure others to get tests done. Because the cure is entirely in your own hands, there may be no actual NEED for diagnosis. Pressuring people to get tests done when consuming gluten is so bad for their health is simply cruel in my book.

Reasons to get back on the gluten and get tested now:

Medical and Financial:

Depending on the country in which you live, you may need to have a diagnosis in order to see different types of specialists in the medical system. Depending on your type of health insurance coverage, you may need a diagnosis even to get a referral to see a gastroenterologist. Or if you do decide you want an endoscopy in the future, even to check healing, your doctor or health care provider may refuse to do so if you don't have a positive blood test first. Again, depends on the doctor/health care system.

Depending on your country, you may benefit from a diagnosis to get tax deductions for gluten free foods.

Psychological

Some people find that they have difficulty staying on a gluten free diet if they don't have a solid diagnosis. This probably has a lot to do with how bad your reactions are, but if your lifestyle includes lots of temptations and you don't think you'd be able to prioritize health over desire, a positive diagnosis may be the extra motivator you need. You know yourself best.

A positive diagnosis also helps some people stand up for themselves when it comes to their needs, knowing they are part of the group that needs to stay gluten-free, and not a part of a fad diet. If you don't feel comfortable about lying and telling people you have celiac without a positive diagnosis, you may also find that people don't take you seriously unless they believe you have an actual medical condition. Because there is a genetic component, a positive diagnosis may be needed to convince other family members that they should also get tested.

Reactionary

It is going to be easier to go back on gluten now than it will be in a few more weeks or months. The longer you stay gluten-free, the worse and more noticeable your reactions will likely become. So if you ever want to get tested, do it now.

But if you do decide not to get tested now, every once in a while there are news articles about the promise of tests becoming available in the future that only require days of consuming gluten rather than the 6-8-12 weeks that guarantee positive results now. Granted, they've been talking about them for years and they still aren't here, so it may never happen, but for some, a gluten challenge is so horrific that this may be the only way that they'll ever get positive test results.

But you need to weigh the pros and cons and make your own decision. If you were still consuming gluten, I'd say get tested, no question about it. If you were already months/years into being gluten-free, I'd probably recommend skipping the gluten challenge and testing unless some additional problems arose. Being early in the gluten-free diet as you are now, I think how strong your reaction to consuming gluten is should play a big role in your decision.

[beth01]

Nature Chick - that was a really well thought out, very perfect response. You should save that for further use.

 

Curious B - What she said.  Welcome to the forum and good luck in no matter what you decide.  You already know you have a problem with gluten, you just have to decide what to do with that information.

[nvsmom]

The symptoms of celiac disease and non-celiac gluten intolerance (NCGI) are about the same (and your symptoms sound similar to mine) but those with celiac disease seem to be at higher risk of developing other health problems if they continue eating gluten.  Luckily both problems are treated with a 100% gluten-free diet, so if you stick with the diet, and are strictly gluten-free, you will probably continue to feel better.

 

As NatureChick said, you'll need 8-12 weeks on 1-2 slices of bread per day (or equivalent) to have the most accurate testing, but that will not guarantee an accurate test.  Most celiac tests have a sensitivity between 75-95%, so there is a chance (often between 5-25%) that a celiac could be missed - it's not a large risk, but it can happen.  See page 12 of this report for the numbers: Open Original Shared Link

 

You could always try testing now. There are some celiacs, a minority, whose auto-antibodies remain elevated even after eating gluten-free for months. There is a chance that could include you, but be aware that if you get a negative it could just be due to having a gluten-free diet for a few months. The tTG IgA and tTG IgG tend to be slow to respond to the diet.

 

Hypothyroidism is linked to celiac disease, and that can cause fatigue.  You might want to get that checked.  Your TSH should be near a 1, free T4 and free T3 should be in the 50-75% range of your lab's normal reference range, and TPO Ab should be low.  Do not bother with the total T4 and T3, or just T4 and T3, as they will not tell you much.

 

And welcome to the board!