Going To Be Diagnosed Again

[lorna]

I was diagnosed with Celiac when I was 5 years old and was in and out of hospital getting all the tests and biopsy's etc.

Up until I went to secondary school I did stick strictly to a gluten-free diet with the aid of my mum to keep me right. Unfortunately in my teens I rebelled a bit and decidedI knew everything and started introducing wheatproducts into my diet, mainly crisps & fat cakes etc. I didn't seem to be suffering any side effects although was a bit irratable at times but this was just put down to my age. Had another few test done and low and behold it came back I was no longer Celiac.

I have then since carried on with a normal diet, although through the years have had very bad eczema, psiorias of the scalp, and now I am begining to suffer from short pain spasms in my knee. My hair has been thinning at the from of my head for the last 10 years and have learned to accept this by coloring my hair light shades to camaflage my scalp.

I have been to my GP twice now enquiring if there are any treatments available to re-grow my hair, the first time was about 20 years ago and the second time was in December of last year. Both times I hav been told that there are no roots therefore it is unlikely that re-growth will occur. Never ha there been any link to my Celiac history, but I am starting to wonder if all this time I have actually been Celiac and wrongly diagnosed in my teenage years. I am waiting on an appointment to see a dermatologist for my scalp. But I think meantime I need to make an appointment to have a blood test. Has anyone else had similar experince?

[Lisa]

Lorna:

Welcome to the Board. It is my understanding that once diagnosed with Celiac, you have it for life. It does not go away. You may have experienced some sort of odd remission, although, I have never heard of it.

Hair loss is definitely on symptom of celiac disease as well as thyroid disease, which also can be associated with celiac. I feel your concern. Hair loss can be very tramatic

My hair had thined considerable, but it appears to be growing out a little after being gluten free for a year and a half.

If you choose to be re-tested, remember to remain on gluten as for the tests to be more accurate. If you choose not to be tested, you can begin the diet immediately.

I wish you well in whatever you choose.

[chrissy]

it used to be thought that children outgrew celiac disease----they have since learned that this is not true. once a celiac, always a celiac. children with celiac disease will sometimes go through what they call a "honeymoon" period during their teen years when symptoms seem to disappear, which would probably explain why you didn't seem to have problems with gluten as a teen. if you were only eating gluten occasionally, you may not have had enough damage for antibodies to register when you were tested as a teen.(or for damage to show with a biopsy) i guess it could be possible that you never really had celiac to begin with----but not likely if you were diagnosed with a biopsy. if it were me, i would stay on gluten and ask to have a total IgA test and a Ttg antibody test done. this is the most accurate blood test there is at this time.

there have been other people on the board that tested positive as a child, but were later told they no longer had celiac-----only to suffer for years before being "rediagnosed".

[Viola 1]

Hi Lorna, welcome to the board.

Yes, Celiac disease is a life time thing, although quite often the symptoms are less in the teen age years. Something to do with hormons I'm told.

My hair is thin as well from over 30 years of undiagnosed Celiac, although it is healthy now, it will not thicken any more.

Good luck with your decision, you will need to be eating gluten for those tests to be accurate.

Keep us up to date on how things go.

[rez]

To reiterate, YOU DON'T OUTGROW CELIAC. PERIOD. Good luck.

[lorna]

it used to be thought that children outgrew celiac disease----they have since learned that this is not true. once a celiac, always a celiac. children with celiac disease will sometimes go through what they call a "honeymoon" period during their teen years when symptoms seem to disappear, which would probably explain why you didn't seem to have problems with gluten as a teen. if you were only eating gluten occasionally, you may not have had enough damage for antibodies to register when you were tested as a teen.(or for damage to show with a biopsy) i guess it could be possible that you never really had celiac to begin with----but not likely if you were diagnosed with a biopsy. if it were me, i would stay on gluten and ask to have a total IgA test and a Ttg antibody test done. this is the most accurate blood test there is at this time.

there have been other people on the board that tested positive as a child, but were later told they no longer had celiac-----only to suffer for years before being "rediagnosed".

I was diagnosed twice with biopsy's as a child, then when the blood test came back clear as a teenager it suited me to be able to eat normal food. I can only assume that if I am tested positive again that it is of a milder nature that most people on this forum.

Over the years I have had depression, skin problems and psoriasis of the scalp which would explain the hair loss. But maybe all along its been coeliac, but it never once entered my mind that it was. i havn't thought about this for years, it was my mum who printed alot of info from the web for me and she made the link. My immediate reaction was to go gluten free, until I read all the inof on this forum. This is a source of knowledge better than any GP.

you would think the Gp's would have made the link by now....or maybe not, like everything else you usually diagnose yourself these days. I have an appointment to see the GP tomorrow to get them to trace back my records and test results and to arrange to be tested again.