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Member Since 03 Jan 2013
Offline Last Active Aug 06 2014 08:35 AM

Posts I've Made

In Topic: Pain, Bloating, Even After Strictly Gluten Free

06 August 2014 - 08:35 AM

Andirubes, it still happens to me.. after 18 months gluten-free. To be fair, I have actually been glutened, I think, but it was on my FIRST day of holiday (and then I got glutened again as soon as I got back to Rome having steak and roast potatoes in a restaurant I've been to before. How do I know? well--- the explosive consequences coming in one hour later are proof enough to me).


However, you have been just one month gluten-free. One month! You need at least six months for your guts not to react to any kind of irritation. Think of this: if you had a skin burn from an acid and you stopped slowly pouring acid over it, you'd get better. But anything apart from soothing creams would NOT be appreciated by your burnt skin while it heals. How long? Well. You are young, you should get better sooner than me! But do not get scared if you get sick apparently with no reason. it is, unfortunately, completely normal. But it DOES get better, believe me. It's a lifetime care and you cannot slip but it does get better

In Topic: Muscle/joint Pain When Glutened

05 August 2014 - 05:35 AM

Unfortunately not much. I'm writing to say that it happens to me as well; very stiff neck/shoulders together with intestinal distress, particularly on the left side, with awful jaw stiffness and tension headaches around my teeth and my lfet eye (right side achey too but not the same way). I've had massages, physioterapy aimed at the jaw, and both help. best things are muscle relaxing drugs. Unfortunately it is not stuff you can use for a long time. I took some Flexiban (italian commercial name) which in structure is similar to an anti depressive drug, and it works on the central nervous system. I was told to take it 5 night on, 5 off, then again 5 on and then STOP. It did help during a difficult period.


Otherwise: yoga, massages, sleep. Working with a stiff neck is not nice but being on holiday for a week with a constant tension headache for 4 days because (if I am right) a restaurant glutened me (ever so slightly...) is no fun party either.

In Topic: Menstrual Cycle Becoming Irregular After Being Gluten Free?

05 August 2014 - 02:32 AM

Well, this is VERY interesting.

Since going gluten free, my periods have become irregulars - either 20 days, or 35/38 -. Since I was 47 when DX, and 49 now, I thought "perimenopause" and tried to live with it.

Now I think there are all sort of links between hormones and gluten. There is at least one study about celiac disease and hormones which I heard of - should look it up - Of course we are not presenting a coherent, scientifical body of evidence, but it is strinking all the same.


I really wouldn't know how to explain it, however, apart from thinking that hormones cope with gluten and celiac and when you take away gluten, they have to re-calculate everything...?? There must be a trigger.

In Topic: 5 Years Gluten Free- Encouragement For The Newbies

05 August 2014 - 02:07 AM

Hi there everybody.

I want to thank Sandsurfgirl...

I am Italian too and I am gluten-free since December 2012. it's been a long road and I am still sick - not all the time, but often enough to bring me to my knees, or rather to have a feeling of malaise, even if my antibodies have long been in the normal range.  My gut is very delicate (I was a 3B marsh, dx at 47, after years of suffering). Just now I am struggling with lingering symptoms from a restaurant meal where gluten found a way into a steak and roast potatoes (don't exactly know how). It's been ten days and while, thankfully for me, I can function when glutened after the first bout of D, I am still fighting gut pain, tiredness, brain fog etc.

Actually I came here today to ask whether TEN DAYS of lingering symptoms is normal!

The good thing is that when I am well, I have energy as I didn't remember having in... decades.


A word about beauty stuff etc. Of course you do not absorb gluten through your skin. But personally I tend to be wary. Cream goes on hands, hands get washed imperfectly, fingers find their way into my mouth. Hair spray in on my hair, hair spray is on my pillow, my mouth is on the pillow. Actually, CAT FOOD is theoretically a problem too - or maybe not theoretically. I have two (cats), old and ailing and cranky about food. Food with unspecified "cereals" goes into dish and splashes on my fingers. Ok, so i wash very well my hand after feeding them. But cat eats food, cat licks himself clean, cat walks all over the kitchen looking for more food (yes, try to teach a cat NOT to walk over kitchen counters) or sleeps on couch or sleeps on bed... Is it implausible that some of those 'cereals' find their way into my gut? I don't think so.


Bottom line is, it takes TIME. More than I supposed when I started. I though in six months I'd be OK. Now I know that six months is just the time you need to placate your antibodies (more or less, everyone is different, of course). Then your villis have to grow up again. And your gut reacts from anything which might be of difficult digestion for 'normal' people.

In Topic: Glutening: Do Your Symptoms Vary?

05 April 2014 - 01:38 PM

hi there! I'm getting tested for vitamin D but I don't know about B12. I will ask this doctor I'm going to see to prescribe me a full panel. My GP - the public health system one - is nice but I think he can't stand to see me around any more.


I did keep a food journal for quite a while. I know my staples are rice, chicken and apples - and some vegetables (salad, carrots, fennel, green beans, leaf vegetables, artichokes are all right). Also red meat in moderation and eggs seem to be all right. Almonds and generally nuts, although I'd have to test them accurately to see if the mount up to problems, but they do not provoke major reactions. In restaurants when I'm good, I keep to steak and roast potatoes or simply steak (no sauces). It can be contaminated by pans anyway, I know.


It is not frequent to find soy in processed food here in Italy. I'm lactose intolerant anyway (actually that seems to be getting better, but it means I can have small quantities of de-lactosed products) so I skip milk and cheeses. I never liked eggplants anyway:-) What I need is a nutritionist, I guess, but I could not find a reliable one until now - I mean one who KNOWS about celiac...


What I really find difficult - but I know you people know that, but if feels good to rant about it - is to explain people how MUCH sick one can get. They don't get it. I've got lots of nice friends who've been cooking for me and taking me very seriously but they still don't quite get it. And I've got dear friends who tell me things like "YOU choose the restaurant cos YOU'RE the complicated one, ah ah!". I bite back my answers, because they simpy don't get it. I've tried explaining that if I have gluten, I risk to feel like I've been poisoned for days and days, or like I've got a bad hangover - you choose the analogy - but they don't really get it...