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Member Since 03 Jan 2013
Offline Last Active Apr 11 2014 01:38 AM

Topics I've Started

Glutening: Do Your Symptoms Vary?

05 April 2014 - 11:25 AM

Hi guys! I've been absent lately because... I felt much better all in all. I measure my health by the number of medical searches I do on Google and by the number of specialistic visits I book.

The question is: do your symptoms after a glutening vary?


I am not certain that I have been glutened. I was dx in December 2012 and all last year until August I've been feeling better and worse on and off, with periods of great distress and periods of feeling better. In fact, so oscillating my symptoms have been (including ocular migraines and worsening sight, dry eyes etc, yes I know about Sjogren) that I have thought I may have hormonal problems linked to perimenopause and I have actually booked a visit with a gyno/endocrinologist for next Friday.


But all in all, from August till December I have been feeling better. Over Christmas I was in Turkey and almost always slightly sick. And in the last couple of months I've been feeling increasingly worse- again day on, day off... and culminating this last three weeks with a bout of 24 hours D (I thought it was flu) and since last Monday with weird neurological symptoms I never had before: numbness on my left side and cold feelings irradiating from arm and leg (but no loss of sensibility thank God) and HORRIBLE anxiety close to panic attacks, convincing myself I 'm on the verge of dying, etc. You know the drill. I really freaked out. And for this last week my digestion hasn't been good either.


All this MIGHT be hormonal - we'll see - and it MIGHT be something else. Hormones, especially as related to my eyesight, are still worth investigating, but I'm thinking that I've been getting careless and eating outside very often, like four times a week or more, and often banking on the kitchen of wherever I am (friends or restaurant) being careful. Fact is, CC is always a possibility and I may have added SEVERAL instances of CC over time. But if this is the case, I do NOT follow always the same pattern after glutenings. Usually D is the first symptom, but anxiety and weird neuropathies two or three weeks after a D bout is a first for me, I think...


However: plan is, eating as carefully as possible for the next month. I still WILL have to eat out several times for work, or because I will be far from home, but... I'll try being extra extra careful.


Any consideration is welcome!


thank you



(I think anxiety is the most debiliting thing I ever felt, whether it's hormonal or celiac-linked)



Cc And How Stupid Can You Be

06 August 2013 - 01:22 AM

so I'm on holiday and doing, I think, fairly well and being pretty careful after 9 months gluten-free and thinking that actually I do not know how strong a reaction can I get from gluten and maybe I'm one of the lucky who don't get any reactions at all. Then I go out for dinner (normally I eat at home or in carefully selected places) in a very popular place which clearly doesn't have a clue, so I order roast fish to be on the safe side.


And then my friend order pasta with arselle (mussels) but she does not eat her mussels because she likes the taste but not the texture. And, even if it seems incredible to me NOW, I think it is actually OK to eat the dozen or so mussels that have been in the pan with the hot spaghetti and I do not realize they are coated with gluteny oil. So I have them, and 45 minutes later my gut literally explodes - luckily I was back home by then.


The good news: a couple of imodium seem to have taken care of the gut part after I voided everything I had. No throwing up either. And yes, today I'm woozy, very tired and foggy brained, but it could be a lot worse. A LOT.  The bad news: I'm INCREDIBLY stupid. Ok, it all goes to experience, but...


I know everybody's reaction is different, but can anyway tell me if their main reaction is a bout of D followed by a bad hangover feeling? Because I'm 99% sure this was a glutening, but I can't exclude that the mussels weren't quite fresh or something. thank you...

Celiac And Perimenopause

12 July 2013 - 08:59 AM

Dear all

I'm not certain this is the right forum, I hope so. This is a post mainly for women who were dx over 40 and I'm writing it after months of trial and experience...


I am 48, I've been gluten-free for more than 7 months now and things have been going better, in terms of energy and gut problems (and antibodies, which have dropped within normal range). However in the last few months I've been suffering from a host of weird symptoms which sped me from doctor to doctor. It was quite hard to get to a diagnosis. What it all boils down to is that apparently I'm in the throes of perimenopause, and it is not a nice experience. I've been having irregular periods - every 15 days, then every 40 or so. Of course, when last month I finally was tested for hormonal imbalance I had a perfect 28 days cycle - so my values came out normal. But the symptoms are there.


Now - I would like to list the symptoms and then to list the tests I took thinking I was deathly ill. But the REAL reason I'm writing is because my weird symptoms started a couple of months before I was DX as celiac. Perimenopause among other things can unleash a host of food allergies. I'm thinking the two things are connected and I also saw at least one medical study stating that celiac women have more menopausal problems than average. I've also read some women become celiac after a pregnancy - hormones again. Now, I don't know whether being celiac is playing with my hormones or whether my hormones went crazy and among other things triggered a gluten sensitivity (but I'm not classed as 'sensitive', I am a bona fide, no-gluten-for-life celiac, or so it would seem). But I'm certain there is a connection there and would love to hear from other people having the same experience.


TESTS I TOOK IN THE LAST THREE MONTHS - more ecographies - female hormones (blood) - thyroid (hormones, antibodies, all normal) - brain scan and brain blood vessels scan (all normal) - several functionality tests at my eye doctor (all normal) - 24-hour blood pressure check (2 slight peaks) - heart check (all good) - neck arteries scan (all good)  anything else? don't think so... add to these all the tests I took BEFORE I was dx as celiac and frankly, it's enough to understand why I'm a nervous wreck at times.


SYMPTOMS - they all come and go in, well, cycles, although by no mean regular! - Terrible shoulder tension. Tension headaches. Aura migraines with no pain (hence the brain scan although my eye doctor told me they were hormones-related; never had those before in my life and they are REALLY scary, colored haloes in your eyes eating up the visual field for 20 to 40 minutes) - loose stools - aches in legs - dizziness - slight nausea - lowered, blurry  vision - very dry eyes and very dry vagina (yes I know about Sjogren but my eyes are terribly dry with other symptoms and quite normal when I'm feeling ok) - brain fog - clumsiness (easier to falter) - crushing fatigue at night - unrestful sleep - and, the real peach, anxiety: crying jags (I may start crying for sad things which normally I wouldn't even think about) and crushing anxiety, mostly about my own health but also for family, pets, work, whatever. All this, I discovered, is fairly "normal" for many women my age or older. Quality of life plummets and doctors are startingly unhelpful for the most part.


I have started a homeopatic therapy, although I'm rather doubtful about it, because I do not want to go on a hormone replacement therapy - for now. I would really appreciate your thoughts on the relationship between menopause and celiac disease!


Can Cat Food Cause Glutening?

21 May 2013 - 08:59 AM

I have found out most of the food I give to my two cats contains either "wheat flour" or a more generic "cereals" (Royal Canin Ageing and Ultra light, and Hill's k/d in pouches).

I'm going to change their diet. However - did anyone have inklings and/or established that the food they gave their cats was actually a cause of glutening?



alessandra, 6 months gluten-free

Cc Issues And Thank You All For Being There

21 May 2013 - 06:19 AM

One must have been there to understand.


For instance: why have I been feeling so off key for the last couple of months (at least?)  Why did I spend the last ten days with persistent dizziness, GI problems (although not awful), huge tension in my shoulders and most of all, disabilitating levels of anxiety (crying jags, hypocondria totally out of control?)


I do not know for certain but today, feeling much better, I believe that I have added CC to CC . I am astonished that once more, I managed to FEEL like I had been glutened without having the clarity of mind to understand what was happening.


I cooked myself or watched everything being cooked, I thought I was being really careful... Well, here is a list of suspects:


1) hairspray, which I use on my wet hair and massage with my bare hands. It is more than possible that I got the stuff from my hands to my mouth (i do wash my hands afterwards but it's really sticky stuff). I am not CERTAIN that it contains gluten (Camille Albane Eau Texturisante, rings a bell anyone?), but I cannot exclude it and have been sick for about the right amount of time since I bought it (and no, I'm not using it again).


2) pet food, which sometimes I touch with my hands while cooking for myself as well. I do wash my hands, but still..


3) four beef hamburgers I bought off the counter at the butcher a couple of weekes ago. "MInce the meat for me, please", I said. "I certainly will" said the butcher. "However, while those croquettes there and the spinach patties and the stuffed zucchini have bread crumbs in them, the prepared beef hamburgers are plain meat". "Ok", I said, "then I'll have those, thanks". Well, I am brought to believe now that he may have been sincere, but the burgers were certainly prepared in the same room and probably on the same wooden board that the croquettes patties etc etc. Stupid me.


The point I wanted to make is that while I am not certain about the source of CC, it is very clear to me now that I WAS glutened. The worse part of it was the anxiety. Well, the dizziness and slight nausea and general imbalance are not nice either, nor is the awful tension in my shoulders or my spastic gut. And what about the vision loss?  And since I'm at it, does anyone suffer from AURA MIGRAINES (colored haloes around objects, during 10/20 minutes) albeit  with no pain from repeated CCs?


However, while in the deep of it, it is easy to tell myself that it is anything BUT a glutening. From symptoms of a new sickness, to psychological problems. And since nobody seems to believe that I may have gotten sick from hairspray or from a crumb in a beef hamburger...


That's why I want to thank you all, guys: for being there and having been there and having lived through it already, and valitading one's perceptions when everybody else (gastro doctors included) tell you "that is nuts".


alessandra, almost 6 months gluten-free