Tested Positive Aged 2 But Do I Really Have Coeliac Disease?

[Flydigital]

I was diagnosed with Coeliac disease at age 2 (biopsy) and have been on the diet all my life. (Now aged 45)

 

This is the fist time properly reading anything about it coming to this website. I have always understood Coeliac disease to mean - eat wheat and you throw up, have diarrhoea and stomach pains. When I moved from milk to gluten aged 6 months I started being sick and lost weight. 

 

Once I was old enough to have freedom to roam a bit, aged 11ish I cheated when it suited me on a snack here or there. And through my adult life when I’ve been caught out on the road I’ll eat a slice of pizza, breaded chicken or other junk food to keep me going when there’s no other option. Stock cubes, beer, soy sauce etc. I’ve always treated as ok but know they have traces.

 

I have stayed on the diet, with the exceptions above admittedly because way back I was told even without any symptoms you have to stay on the diet as otherwise ‘it’s bad for you’. And so I have, but thinking it has never affected me past the age of about 8 years old.  Reading this site though has shown me a whole list of things I would never have though had anything to do with being a coeliac and look more like a list of things that happen to people in general. All very vague and nebulous symptoms. I thought Coeliac disease did only one thing - destroy villi in the small intestine thus making it impossible to absorb nutrients. This causes rejection of food and malnutrition. 

 

Anyway, the reason I am here: I recently saw a gastroenterologist as I had a stomach ache for a couple of weeks and was worried. I had various test that thankfully showed a healthy digestive system along with healthy villi. I then asked him about my condition saying if I eat gluten I don’t notice any symptoms. People say 'you have to stay gluten free for life’ etc.etc. What’s the deal? His view was - Well, maybe you don’t have Coeliac disease and we could check to confirm it. 

 

He has recommended the following action:

 

1. Get blood test now to confirm antibody is negative.
2. Start 5 weeks of eating gluten - 100g / day of wheat.
3. Test again for the antibodies
4. If still negative get a biopsy to be sure. 
5. If negative then you are not a coeliac. 

 

This seems to go against what I’ve read here. I am surprised that being Coeliac is a vague thing these days. As an infant I would have died presumably if it was ignored but it seems people wander around for years with it not realising they have it. Very different to what I understood it to be. So perhaps I really do still have it.

 

So until today I was thinking I was about to walk away from the diet clear of the disease. I think taking the gluten challenge and tests may be good for me though. If it is positive then it will give me the cue to stick properly to the diet.

[BlessedMommy]

If you had celiac confirmed by biopsy at age 2, then you are a celiac. It is a lifelong auto immune condition that never goes away.

 

If you are wanting to gluten challenge and retest, you need to eat gluten for at least 8-12 weeks before taking antibody tests. 

[sunny2012]

Diagnosis by positive biopsy is 100% accurate. If you had damaged villi at age two, you have Celiac. Period!

The only instance that I know about where it is inaccurate is as a side effect of blood pressure medication which I doubt that you were taking at age 2.

 

I would not trust a doctor who wants to waste tons of money running blood tests, put a patient thru eating very dangerous foods that damage the immune system, and expensive biopsies to confirm a diagnosis already made. That seems to violate the oath, "First do no harm."

 

Celiac can kill before doctors recognize the symptoms of malnutrition. They simply are not trained to notice anything but very serious deficiencies.

 

How many biopsies did he take to "confirm" that you have healthy villi while eating gluten? Those can be taken improperly and not show the damage, analyzed improperly and not accurately show Celiac, or simply taken from an area where there is no damage.