Do I need to be tested for Coeliac to be certain?

[drummerlady]

Hi Everyone, I had sudden onset of digestive problems starting Feb 2020 during lock down. I had severe bloating, a very noisy bowel, cramping and worst of all early morning diarrhea. Fortunately, once I had emptied my bowels, the diarrhea was not a problem again until the next morning.

I have had milder digestive discomfort most of my adult life but this came on so suddenly and was awful at times.

I initially thought I was allergic to a new yogurt product I had recently been eating but a dairy free diet for 4 weeks did nothing to alleviate my symptoms so by a process of elimination, I began removing certain foods from my daily diet and after 4 months discovered that my symptoms were gluten related. The symptoms all disappeared within days of removing gluten from my diet.

I did not visit my GP during this time due to lock down and now, having followed a strict GF diet for almost a year, I am completely fine.

My question is, if I have coeliac disease, is it necessary to get a proper diagnosis? There is no way I want to go back to eating gluten if the symptoms are going to return and I understand that eating gluten is required in order to get a clear result.

Since I feel absolutely fine and I eat a healthy balanced diet, is there any reason to actually find out if I have coeliac or not? Thanks in advance

[Cooper27]

I'd say it's a personal choice - I find people take a diagnosis of coeliac disease more seriously than an intolerance.

My partner is coeliac, and he gets annual blood tests to check B12, vitamin D, ferritin and folate. He also had a dexa scan, gets food on prescription, had appointments with a dietician and gets a flu jab (and earlier Covid jab).

I'm intolerant and get none of the above for my own autoimmune disease, I also find I get challenged on my gluten intolerance - I often find it easier to just say I'm avoiding gluten so as not to get partner sick, because it gets less questions.

[drummerlady in reply to Cooper27]

Thank you, my main concern is any other health issues that could be as a result of undiagnosed coeliac but I already take B12 for a deficiency that I discovered several years ago. Maybe that is linked to my inability to eat gluten, I have no way of knowing unless I take the coeliac test but tbh, the idea of eating gluten and being sick for several weeks is not something I am willing to do just to get a diagnosis that may still be negative.

[Cooper27 in reply to drummerlady]

Yeah, there's a huge variation in symptoms between people - I recently did the challenge to get tested myself, but I'm quite lucky my main symptom is dermatitis, not crippling digestive issues like my partner would get if he had to do a gluten challenge.

[Hidden]

It's entirely your choice, and no rights or wrongs in this one. Some choose just to stay GF and are happy enough with that. Others do the gluten challenge, knowing it will be unpleasant. It's entirely a matter of choice.

It's more about weighing up benefits of getting a definitive diagnosis -v- the hassle/discomfort/illness that goes with the gluten challenge.

Benefit to having diagnosis is that you are on a pathway to further tests and advice, e.g. NHS dietician, repeat tests to endure damage has healed, blood tests for vitamin deficiencies and dexa bone scan for any damage that may have happened there. But you can, arguably, request the blood tests and dexa without a diagnosis of coeliac.

I have not had definitive diagnosis, but benefit from avoiding gluten. It would be helpful to have 'coeliac' on my medical records as would make life easier in terms of not being constantly negated for wider health problems that I believe are linked to having no had diagnosis of coeliac for so long. But a diagnosis will not change my life as I still have to avoid gluten either which way (and pretty much all grains at this stage, even the gf ones). But it would be nice to know if I have coeliac or not just for my own sake of knowing.

It's a tough call, and only one you can make.

[drummerlady in reply to Hidden]

Thank you, my main concern is any other health issues that could be as a result of undiagnosed coeliac but I already take B12 for a deficiency that I discovered several years ago. Maybe that is linked to my inability to eat gluten, I have no way of knowing unless I take the coeliac test but tbh, the idea of eating gluten and being sick for several weeks is not something I am willing to do just to get a diagnosis that may still be negative.

[MausenMumma in reply to Hidden]

"I have not had definitive diagnosis, but benefit from avoiding gluten. It would be helpful to have 'coeliac' on my medical records as would make life easier in terms of not being constantly negated for wider health problems that I believe are linked to having no had diagnosis of coeliac for so long."

Thanks, Benjamin for articulating my thoughts so exactly. I know that issues I have are linked to gluten, but I feel that without the official diagnosis, professionals don't join up all the dots. So, I research and find out what I can do to help myself.

[nellie237]

I'm glad you feel good now. - I wish I had realised what was wrong.

The only things I can think of that are a benefit of a diagnosis are

1. Annual NHS blood tests in case of deficiencies

2. You won't be eligible for any medical trials

3. If they ever come up with a 'cure', you won't be 1st in line

4. Some areas can get GF Bread/Flour on prescription

I have a diagnosis, and I wouldn't do a gluten challenge.🥴

[drummerlady]

Thank you, it's the gluten challenge that puts me off, I just can't go through with it!

[CATRYNA49]

When I had extensive blood work done 10 years ago the result was Gluten Intolerance. So, I went gluten free, and my health improved. When I diagnosed myself with long standing (40+ years) Dermatitis Herpetiformis, 6 years later, I went completely grain free and my health improved even more. I have never been officially diagnosed Celiac with any endoscopy, etc., but the very fact that my health improved and having DH pretty much confirms Celiac. At this point, and even if it were 10 years ago, I would opt out of invasive procedures. Try going gluten free and see if you improve. If you do, then you are on the right path. Sometimes we just have to diagnose ourselves and go with what works. Before 2010, I spent decades and plenty of money on doctors who were never able to figure anything out on my behalf. I have come to the conclusion that most doctors are worthless and finding the right one is like looking for a needle in a haystack. But, when you find them, they are worth their weight in gold.

[Hidden in reply to CATRYNA49]

I agree with your comments on doctors. I've paid fortune privately also, in addition to pointless appointments with gaslighting misogynyist consultants. It really does blow my mind that the link between diet and health is so poorly understood, and doctors have such an issue with figuring out coeliac. It's not rocket science, but we end up having to be our own doctors whilst they swizz around in their fancy sportcars and have second homes in France.

[CATRYNA49 in reply to Hidden]

If someone depends on a doctor for guidance with diet and health that is their first mistake. Doctors receive little or no information or training in the field of diet or nutrition. It's all drugs via the establishment of modern medicine back in the early 20th century via David Rockefeller. Today's "modern medicine" is equivalent to nothing more than Pasteurian superstitious medieval witchcraft.

[drummerlady in reply to CATRYNA49]

thanks for your reply. I am lucky enough to have a good GP who would probably refer me for testing but having been gluten free for almost a year now and feeling great, I am loathed to go back to eating gluten while I wait for a test that could take months and still prove negative. The pain and suffering just isn't worth it if it makes no real difference as to whether I am diagnosed or not. It appears from the replies there is nothing really to be gained from receiving a diagnosis even if it does turn out to be positive for coeliac so I think I will just keep to my gluten free diet and accept that it has to be a way of life from now on and it's really not that bad although I do miss fresh cream doughnuts lol.....

[CATRYNA49 in reply to drummerlady]

I so agree. I went through decades of health issues and worthless allopathic doctor after another. It took a Chiropractor/Homeopath to discover what was going on and it's been much smoother going, since then.

[Overate]

Hi, I am in a similar situation regarding testing. I had a blood test to look into the bloating side of things and the doctor said that it had come back showing mildly coeliac. I am due to have an endoscopy in a couple of weeks. I have continued to eat foods containing gluten and have wondered if it would be better to find out for definite or go for a gluten free diet. I hope all goes well, which ever way you decide to go.