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Glutening: Do Your Symptoms Vary?

alesusy

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alesusy Explorer
alesusy
Posted

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

alessandra

 

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

 

 

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notme Experienced
notme
Posted

how's your vitamin levels?  also, you might have a sensitivity to something else.  you might want to use a food journal to try to figure it out.  the only problem with that is, you may not be able to list every ingredient if you are eating out.  me, I have a secondary sensitivity to soy.  it mimics a gluten reaction and it does make me nervous and jerky.  also, if I eat eggplant, it makes me positively narcoleptic (for example) we are especially sensitive people, evidently!  aside from the trouble you are having, glad you are feeling better.  and, lolz, i'm at the hormonal crossroads myself (i'm 51) I wish my body would make up it's mind!!  I can't imagine what sort of mutant eggs I have left in there hahaha  ;)  feel better and I hope you get it figured out  :)

alesusy Explorer
alesusy
Posted
  • Author

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...

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