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celiac disease

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#1 *melrose*

Posted 08 February 2020 - 07:36 PM

I'm seeing a specialist at the hospital on Monday but just wanted to see what other people's experience was with celiac disease. What was your fist sings that you had celiac? How were you feeling ect? Pretty sure I have it but will find out Monday. Right now I have been bloated for 3 days, we moved last week into a new home and I ate takeaway all week so I think it's taken it toll on me, in pain in the stomach so I'm hoping by tomorrow it settles down. I have mild reflux too so that's helping.

#2 Crazyhouseholdof6

Posted 08 February 2020 - 09:15 PM

I was diagnosed at 35, with no stereotypical symptoms initially. In retrospect it’s been evident most of my life. The biggest one is being anaemic and needing regular iron infusions forever and severe, lifelong constipation. That’s the only two symptoms I had but since being diagnosed and mostly cutting out gluten my bloating has greatly reduced and I feel immensely better generally. I’m not tired all the time and have much more energy. I didn’t realise how bad I felt until I have it up and feel so much ‘lighter’. I’m lucky I’m that I don’t get sick like some people when I get glutened, I just bloat badly for a few days.
It’s not the worst thing to have and shops and cafes are becoming much more aware about coeliac disease and catering for us. General Gluten free food from Coles now has a lot of brands and choices and if you buy on special it’s not as expensive as it used to be.
Hope you get the results you want so you can manage your symptoms.

Edited by Crazyhouseholdof6, 08 February 2020 - 09:16 PM.

#3 BusbyWilkes

Posted 09 February 2020 - 03:50 AM

PP, given your lack of typical/red flag symptoms, how did you get diagnosed? Did you have a positive test result on blood tests?

#4 SplashingRainbows

Posted 09 February 2020 - 05:03 AM

Another with out the ‘stereotypical’ symptoms.

I was diagnosed due to being both iron and b12 anemic.
Within a week of diagnosis my asthma disappeared.

Now my body is absorbing iron my physical fitness is amazing. I can do so many things i struggled with previously. The most relevant one is stamina. I can be out and about all day and keep going whereas before I’d walk for an hour and need to sit down.

#5 a letter to Elise.

Posted 09 February 2020 - 06:25 AM

My biggest symptoms were my weak immune system and low iron. I was sick with random things constantly. The last few months before diagnosis, I started getting really bad gastrointestinal symptoms. Severe stomach pain, so bad I’d sometimes faint, really bad upset stomach, bloating etc.

try not to stress to much if it’s positive. If you follow the diet, you’ll feel completely normal within a month or two. There are a couple of foods I miss, but there pretty good substitutes, and as the years go by, you forget what gluten foods even tasted like.

#6 Prancer is coming

Posted 09 February 2020 - 06:50 AM

My DD was diagnosed at 7.  She was coming home e from school and sleeping, which was not like her.  She lost weight and was in pain, mainly at night and would often cry due to the pain.

When she was diagnosed, I felt sure I would have it too.  I get bloating, occasionally stomach pains so bad I can’t walk, and lots of foods don’t agree with me.  But the test came back negative.

#7 Ivy Ivy

Posted 09 February 2020 - 07:09 AM

I was diagnosed at 44, a chance diagnosis made after a routine screening endoscopy and colonoscopy which was only done because of family bowel cancer risk.  When the gastroenterologist told me the appearance of the small bowel looked like I had coeliac disease, and she'd do bloods to confirm, I actually leaned over her desk and said, "are you sure, because I bake cakes and biscuits and basically mainline gluten all day, and have no symptoms".

After it got treated I realised that I had experienced symptoms but had never realised they were Coeliac symptoms.  They were:
1. Brain fog.
This is a bit of a woo-woo symptom but since the coeliac disease arrived (and I think I "turned it on" during my pregnancy with my now 9 y old daughter)  my mental sharpness, memory and capacity for higher-order complex thought had all been lower.  I had put this down to chronic sleep deprivation/exhaustion/little kids/ 4+ years of breastfeeding a few babies.

2.  Occasional severe abdominal cramps that didn't really occur after gluten ingestion (which was 5 times a day) but just randomly once a month.

3.  Major hunger.  Because I wasn't absorbing nutrients like iron, etc, from my small bowel, I was constantly feeling like I hadn't had enough food, and constantly grazing, and eating even when my tummy felt overly full, presumably because my nutrient levels were low and my body wasn't physiologically satiated.

4.  My constipation (which I'd attributed to weight gain/pregnancies/less exercise with kids/worse diet) improved.

Melrose, HEAPS of take-aways have gluten in them, so that may have worsened things for you lately.

If you join the Coeliac Society if/once you're diagnosed, they have info days and website info that are v helpful.

It's genetic so if you get diagnosed your family should have the blood tests too.

#8 *melrose*

Posted 09 February 2020 - 07:34 AM

I had a endoscopydone about 6 months ago because of this pain in my stomach and they told me I only had acid reflux so I'm on medication for that. No blood rest yet. It could all be down to have acid reflux too. But I have wroken up bloated again, my stomach is making all sorts of noises. Really looking forward to my appointment tomorrow to sort this out.

#9 *melrose*

Posted 09 February 2020 - 07:36 AM

View PostBusbyWilkes, on 09 February 2020 - 03:50 AM, said:

PP, given your lack of typical/red flag symptoms, how did you get diagnosed? Did you have a positive test result on blood tests
No bloods taken yet.

#10 Crazyhouseholdof6

Posted 09 February 2020 - 12:07 PM

View PostBusbyWilkes, on 09 February 2020 - 03:50 AM, said:

PP, given your lack of typical/red flag symptoms, how did you get diagnosed? Did you have a positive test result on blood tests?
Yes, my diagnosis came from a general blood test with a new GP to check why I was exhausted all the time and why my constipation was so severe. Indicators came back positive so then I had a colonoscopy and endoscopy which confirmed diagnosis. That’s pretty much how mine came about.

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