Celiac Help Tested Positive At 2 Years Old And Was Told I Had Out-Grown It 13 Years Later

[ANDY1976]

Hi, can anyone shed any light on my story? Born 1976 age now 37

When I was 2 years old I became very poorly and my mother thought she was going to loose me, Doctors being doctors could not figure out what was wrong with me. I was loosing massive amounts of weight, being sick all of the time. Anyway after staying in hospital for a while they finally diagnosed me with celiac disease following a biopsy.

As years passed I lived on the strict diet and numerous hospital check-ups every few months. Finally when I was 15 years old the doctor decided to try me off the diet.  I was asked to live on food I was normally not allowed to eat. Being a teenager and missing out for so many years, this seemed fantastic. A few weeks following the the change in my diet I was called back to hospital for a biopsy and the results showed I had out-grown the celiac disease.

Anyway for 22 years I have been eating what I like. Many years passed without problem until I would always complaining about being tierd, a lot of headaches, sinus infections brought on by the slightest sniffle, severe back ache, leg pains, muscle pain, feeling sick, mouth ulcers, pins and needles and many other odd symptoms. Basically I developed alot of various different problems and felt terrible all of the time.

It has been hard to socialise as my friends would often think I had became very unsociable due to being poorly. On the odd occassion if I did feel well enough to do anything with my mates I would feel ill straight after a night out

In the meantime, I have been back and forwards to my GP year after year for all these problems. I was given blood tests, ultra sounds and scans which were all coming back clear. I was branded what felt like a head case. For 12 years I have been prescribed very strong pain killers to try and help with the various pain. Over the past 12 months I have became increasingly worse to the point I can hardly walk. I am only 37 and feel like an old man.

A few months ago after looking online due to the fact I felt my GP's weren't helping I came across a post on celiac disease which stated - once a celiac sufferer basically you have it for life.

Why  on earth was I not contacted by the hospital to say a mistake in my childhood was made regarding my gluten free diet?

My question is - could all the pain I have been in for years be caused by these doctors not knowing the details of celiac disease at the time?

Surely after my own research and after reading other peoples posts I should still be 100% celiac - therefore, for years and years this disease has always been there but due to being told it had gone I have been causing damage to myself? The stupid thing is I have since had two IGA blood tests off my GP which came back negitive. What is going on there? I do not get it, surley they should be positive.

What do you lovely people think please.

 

[bartfull]

You have celiac disease. It was diagnosed by biopsy (which is considered the gold standard) when you were a child. Of course the biopsy years later was negative because you had healed by then. I'm not sure which blood tests you had recently, but blood tests can be false negative.

 

It's true, they used to think a child could outgrow it, but they were sadly mistaken. Celiac is for life. And I'm sure they symptoms you are having now are because of it.

 

But you need to look on the bright side. You grew up on a healthy diet, and even though you went back to eating gluten because of misinformed doctors, you know now and can soon get back on your way to good health. You can't change the past, but you can change the future. A lot of us went undiagnosed for years and years because of misinformed doctors, but we are recovering nicely. You can too.

 

A lot has changed since you were last gluten-free too. Lots more choices in the gluten-free food department. There are quite a few really delicious options for breads and pizza crusts, pastas, and snacks. And since it's been so long, take a look at the Newbie 101 thread in the coping section here. No matter how long you were gluten-free, you will learn a lot and refresh your memory on how to avoid cross-contamination.

 

Welcome to the forum.

[ANDY1976]

You have celiac disease. It was diagnosed by biopsy (which is considered the gold standard) when you were a child. Of course the biopsy years later was negative because you had healed by then. I'm not sure which blood tests you had recently, but blood tests can be false negative.

 

It's true, they used to think a child could outgrow it, but they were sadly mistaken. Celiac is for life. And I'm sure they symptoms you are having now are because of it.

 

But you need to look on the bright side. You grew up on a healthy diet, and even though you went back to eating gluten because of misinformed doctors, you know now and can soon get back on your way to good health. You can't change the past, but you can change the future. A lot of us went undiagnosed for years and years because of misinformed doctors, but we are recovering nicely. You can too.

 

A lot has changed since you were last gluten-free too. Lots more choices in the gluten-free food department. There are quite a few really delicious options for breads and pizza crusts, pastas, and snacks. And since it's been so long, take a look at the Newbie 101 thread in the coping section here. No matter how long you were gluten-free, you will learn a lot and refresh your memory on how to avoid cross-contamination.

 

Welcome to the forum.

I no it is a bit of a daft question but how did they find out later that you do not out-grow the disease. Was it because of people like me years down the line becoming ill again and was there allot of evidence built up over the years to say 100% that no one has ever out-grew it. i take it there have been no special cases heard about someone getting rid of it.

[kareng]

I no it is a bit of a daft question but how did they find out later that you do not out-grow the disease. Was it because of people like me years down the line becoming ill again and was there allot of evidence built up over the years to say 100% that no one has ever out-grew it. i take it there have been no special cases heard about someone getting rid of it.

celiac disease is an autoimmune disease. You just don't outgrow them. Really, very few diseases can be " outgrown". Allergies sometimes can be " outgrown" but Celiac isn't an allergy.

You might want to read a little about celiac disease. This is an easy to understand site.

Open Original Shared Link

[ANDY1976]

Has anyone ever held a case against the health service for Doctors telling patients that they out-grew celiac. I feel like doing it myself due to having to close my business after 5 hard years building it up. In the end i became that low on energy i had to close and loose allot of money.

Surly people going through hell for years not knowing they were being poisened month by month should have a good case,

One blinking follow up letter from the hospital to my GP years ago could have solved allot of by horrible years of pain and many others on here. Why the hell should they get away with it, if we tried to feed someone poison we would be held account in court.

[ANDY1976]

celiac disease is an autoimmune disease. You just don't outgrow them. Really, very few diseases can be " outgrown". Allergies sometimes can be " outgrown" but Celiac isn't an allergy.

You might want to read a little about celiac disease. This is an easy to understand site.

Open Original Shared Link

By the way that site you sent me is a fantastic read up to now. Thank You Open Original Shared Link

[kareng]

Has anyone ever held a case against the health service for Doctors telling patients that they out-grew celiac. I feel like doing it myself due to having to close my business after 5 hard years building it up. In the end i became that low on energy i had to close and loose allot of money.

Surly people going through hell for years not knowing they were being poisened month by month should have a good case,

One blinking follow up letter from the hospital to my GP years ago could have solved allot of by horrible years of pain and many others on here. Why the hell should they get away with it, if we tried to feed someone poison we would be held account in court.

Why didn't your GP read your files and see you had Celiac? Why didn't he/ she explain it to you? Why didn't your parents ask for more info? Go to the library and look it up? Who knows. celiac was considered rare and little known until a short time ago.

[NoGlutenCooties]

Personally, I do not believe that it is possible to "outgrow" an autoimmune disease.  That said, if you were 2 years old your immune system was still developing and there is a lot that is unknown about the body in general, the immune system, autoimmune diseases, and Celiac - so is "remission" a possibility?  I have no idea, but I wouldn't categorically rule it out completely either.

 

That said, you can have Celiac and be asymptomatic for years.  This happens more often than you'd think.  I had no symptoms and only requested the bloodtest because Celiac runs in my family and I had early osteopenia at 40 yrs old.  Sure enough, it was positive and even though my tissue number was only 13 (anything over 11 was considered positive by this particular lab) my endoscopy showed moderate to severe villi damage and the inflammation was clearly visible (I have the photos on my fridge).  So it is possible that you still had Celiac all those years but just did not have any noticeable outward symptoms.