Wrongly diagnosed with celiac?

[Nafy51]

Has anyone ever been wrongly diagnosed with celiac? I initially went to the doctors because I would feel sick when eating foods sometimes so I had blood tests, stool sample and an endoscopy. The results came back the I had celiac disease but I didn’t get the results until a year later, which I found strange. I rang the doctors reception after not hearing any results and she said it seems you do not have celiac, however a year later I had a letter from the hospital asking me to attend an appointment to which he asked how have I been been getting on with my gluten free diet. This was a shock as I’d never had any results back but from them I went gluten free. I never had any of the symptoms and have accidentally had gluten while being on a gluten free diet for over 2 years and had no symptoms. Also no family history of celiac disease.

[Dgtheel]

Some people are asymptomatic. Also known as silent celiacs. It is strange that you got conflicting answers I'd talk to your dr. Are you feeling better eating gluten free? If so carry on.

[Nafy51 in reply to Dgtheel]

Thanks for the reply! I don’t really notice a huge difference in how I feel as I never really had any symptoms but I have noticed I don’t feel sick anymore.

[Hidden]

This is pretty shocking and underlines why no one should trust test results given over the phone by non-medical staff. I've had this experience with Helicobator - receptionist told me it was fine, about a year later GP (looking at my notes) told me I had tested positive for it. Had the same thing more recently for joint damage in my thumb joint - receptionist said xray fine - it was not.

As a rule of thumb, always make a follow-up appointment for test results. It's a hassle, and you may feel you're time wasting, but always do it to be on the safe side.

As Dgtheel states - you can have coeliac but none of the symptoms. A lot of people have coeliac/coeliac symptoms but also get negative blood tests, so if blood test and endoscopy showing coeliac, I would take that as a given that it is coeliac. If you have doubts, get your GP to give you a copy of the test results - both blood test and endoscopy so you can get a second opinion. It would be unusual for both the blood test and the gut endoscopy to both give a false reading, but I'm no expert.

Mistakes and errors do happen, but it's worth getting a referral by your GP to a gastro consultant so you can get that second opinion/expert input. GPs tend to be quite generalist with coeliac.

You mention you had none of the symptoms, but did feel sick after eating certain foods, and decided to go gluten free anyway, which got rid of the sick feeling. That is a reasonable indicator. Be aware that coeliac symptoms can range from no symptoms, through to full blown 'gastric events', with all sorts of randoms symptoms in the middle. Some people just get neurological symptoms (pain in hands/feet) and no gastric symptoms, some people just get a skin rash, some people suffer brain fog/migranes, others get all the symptoms.

[Nafy51 in reply to Hidden]

Thanks for your reply, I’m sorry you’ve had the same issue with test results it’s ridiculous! Maybe I am just a celiac with no symptoms🤔

[Hidden in reply to Nafy51]

It gets confusing.

[Hidden]

No, if you've had bloodtest and biopsy both showing coeliac, you've got coeliac. Height of impossibility to have two different tests showing false negative. I'd say this issue here is not worrying about incorrect test results but wavering on your commitment to a gluten free diet. Only way to know is reintroduce gluten and figure out how ill you get. If you get ill, you've had positive test results.

[Nafy51]

Thanks for your reply. I know it’s strange to think it after all the test came back positive but it’s a lot of reasons why I think I haven’t another being when I had the biopsy the man even said there was no signs of having celiac which I’m guessing meant there was no damage to the area.

[eliz45]

I have celiac disease. I was one of eight children. No one else in my family has celiac. Everyone in my family is heavy and I am a skeleton. I have a strange feeling about your whole experience with that doctor and not hearing for a year. Could you go someplace else.? Clearly they made an error and are not acknowledging it. My doctor sent me to have a genetic test for celiac, and yes, I did have a gene for celiac. What I had not been aware of is that your genes can actually be changed by viruses and bacteria and stress. They can be there but not turned on. After several terrible years of stress I now have active celiac. So it is all very tricky and many doctors are just addressing it.

[Hidden in reply to eliz45]

I don't think genes can be changed. My understanding is if certain conditions are in your genetic predisposition then you may develop them, but your actual genes can not be changed by a virus, or stress.

[Phylenejo in reply to eliz45]

My doctor also explained that to me. What doctors need more knowledge about is Nutrition. Food is our medicine or it can hurt us. It’s not a bandaid like many medicines, it’s a Fix if we can keep our diet clean.

[eliz45]

I guess my thought was that stress, environmental factors, viruses etc can cause a gene to become active, to turn on. I had read quite a bit about it. There are tons of articles about it on the web.