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ClairG

Can Anyone Help?

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Hi everyone,

I'm new, although I've been lurking about for a month or so, reading peoples stories and seeing how they matched up to my experiences.

I want to write to ask peoples opinion's more directly however.

A bit about me:

I'm 34 years old, and have been diagnosed around 6 years ago with Polycystic Ovarian Syndrome.

I live in the UK, so while we have the national health service the amount to which you can actually get a doctor to test for varies as they do not react well to demands and I often get looked at as though I'm a hypochondriac.

For well over a year now I've had increasing difficulties with sleep. I wake up, eat, get kids to school, do a couple of chores and then have an overwhelming need to sleep again. I have to take more naps during the day to keep going, despite sleeping solidly at night. I never get out of the bed in the morning with much energy. Family background is my mother has a thyroid problem and my dad has late in life type 1 diabetes.

Over the past few years I've also had the following issues that have happened sporadically/continuously and never connected:

- Labyrinthitus with continued feelings of vertigo and pink noise (most of the vertigo in the mornings and general feelings of bad coordination)

- desensitised nerves in my toes

- tingling fingers (which was diagnosed as Vit b12 deficiency and was sorted)

- tiredness as previously mentioned

- lately weight gain (PCOS related?)

- bloated during the day and gassy, occasionally such severe cramps that I'm bent over double. Loose stools etc.

But lately this September, I began getting odd spots of blistering sores on random places on my skin. They would itch like mad, then crust over very quickly and also be somewhat painful. They last for over a month, and leave scarring and discolouration.

Three doctors couldn't tell me what these spots were, so I took it upon myself to do a little digging whilst I'm on a waiting list for a dermatologist (18 week plus).

I came across DH as a possible match, although mine are small and dotted about more randomly. Then of course discovering DH led me to wonder about coeliac disease and I began to put two and two together. This has all taken time since September.

When I approached the doctor about it, one doc sent me away without doing the test, then another agreed to a blood test about a month ago.

On ringing up for the results I was told I'd done a TTG test and it was satifactory at 0.6.

And it's been left there.

BUT..

My diet changed dramatically since September. I'm a mature student in my final year at uni and have 3 kids, and due to time constraints and the need to put so much into uni I ate a LOT of ready meals, but in November I ran out of money due to some major home issues, and was forced to start making my own food again and I couldnt afford all the ready meals I'd been eating before. Then a month later I had the test.

I can't help wondering whether I've got a false negative.

So I've cut out gluten, and since have not had a single digestive cramp episode, have more energy and I haven't had another patch of p%$#@# spots.

Does this sound like coeliac?

My plan was to go gluten free for two months say, note any changes, then switch back to a normal diet and again note changes, taking these findings to the doc.

Reckon this is worth doing?

Sorry to go on and on!

Hope someone can help,

Clair from the UK.

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Welcome ClairG !

Have you had your throid checked? It might be worth it to do that also.

False negatives for celiac are all to common.

So I've cut out gluten, and since have not had a single digestive cramp episode, have more energy and I haven't had another patch of p%$#@# spots.

It sounds to me that maybe you have found out on your own you cannot tolerate gluten.

Does this sound like coeliac?- If you are having positive results on a gluten-free diet, then it is very possible.

My plan was to go gluten free for two months say, note any changes, then switch back to a normal diet and again note changes, taking these findings to the doc.

Reckon this is worth doing?.- I don't think it could hurt to do this. Some Dr.s may diagnose this way.

Sorry to go on and on!- Don't be sorry to ask questions.


Started on this journey w/ my 9 yr old son after a bout w/ the flu in the fall of 2009.

2 neg celiac blood tests, mine was also neg. No endo done. Son had x-ray, showing severe constipation. Son has latex allergy. KP for both of us.

Long family history of bowel problems, auto-immune and all sorts of cancers. My G-mother informed me that she was put on a gluten free diet after she had my mom (1950's), of course she stopped when she felt better. She has had problems ever since I can remember.

So here we are! I do have my son's Dr to thank for even bringing up celiac! Thank You Dr.B!

My adult daughter also has been helped by eating gluten-free.

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