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Newly diagnosed with celiac - advice, tips etc welcome!

rarchy

By rarchy
in Coping with Celiac Disease

Recommended Posts

rarchy Apprentice
rarchy
Posted

Hi guys,

I am newly diagnosed celiac. I found out about a week and a half ago, and have been gluten free for 5 weeks (I stopped after the biopsy was taken). I never really suspected celiac, so it was quite a surprise, but when I started reading about it it made a lot of sense in terms of symptoms etc. 

I am 34 yr old female, my main symptom was lack of energy for as long as I can remember, blood tests only ever showed low iron (not quite anaemic) but supplements never made a difference (now I know why!). For the last 5 years I have also had constipation, bloating and gas, but I put it down to stress or bad diet and if I am honest because it was a bit of an embarrassing issue to talk about I became complacent. 

As this is all very new to me, I feel like I have so many questions so thought I would put some here and if anyone has any input or advice from their experience that would be great! I will probably also post more in depth questions in the relevant sub-forums

- For those in the UK, how long did it take you to speak with a dietician. The letter with my diagnosis was sent on 12 April and said I had been referred but I haven't heard anything

- I am interested to know whether other celiacs/strict GFers ever eat foods which say "may contain traces of..." or "made in a factory which processes...." etc. So far I have avoided anything which says "may contain" or "not suitable for celiacs due to..." but I did eat something which said "made in a factory" (Walkers crisps) as they were the only option but then I felt guilty after!

-  What procedures do you take when eating out, i.e. do you only go to places which are certified by Coeliac UK  (if you're in the UK), do you find speaking with the waiter etc actually helps? I have eaten out a few times since being gluten-free and feel like I am being a bit difficult when I bring it up and that they don't really understand. I am lucky to be in London so there are lots of certified restaurants, but even in Pizza Express I didn't think that the waiter really understood. 

- For those who had energy/tiredness problems before, how long did it take you to notice a difference? The only difference I have so far noticed is I am now more regular toilet wise and have had very little bloating/gas.

- I have always had low iron which is most likely due to celiac but also as I don't eat meat (I do eat fish), I am hoping now that iron supplements will help now so have been taking the gluten-free Floradix for the last week. Anyone noticed a difference in this after stopping gluten?

Thanks anyone for taking the time to read, and feel free to put any general advice you have :)

Rachel 
 

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Jmg Mentor
Jmg
Posted

Hi Rachel and welcome :)

I think you've found the single best site on the web for help and advice. Hope it's of use to you.

51 minutes ago, rarchy said:

- For those in the UK, how long did it take you to speak with a dietician. The letter with my diagnosis was sent on 12 April and said I had been referred but I haven't heard anything

 

I tested negative for celiac so no referral. My experience with NHS however suggests it could be worth phoning your Gastro's office and asking the admin staff there to check on this. Things get overlooked...

53 minutes ago, rarchy said:

- I am interested to know whether other celiacs/strict GFers ever eat foods which say "may contain traces of..." or "made in a factory which processes...." etc. So far I have avoided anything which says "may contain" or "not suitable for celiacs due to..." but I did eat something which said "made in a factory" (Walkers crisps) as they were the only option but then I felt guilty after!

I would avoid anything with those warnings on. It's a pain in the arse because, for example, it recently appeared on a brand of nuts I like. However having some experience of production and marketing environments that warning will only be going on the pack if someone in the company thinks there's a chance of contamination. There's always other products to choose from so I don't take the chance. 

Walkers crisps have given me a reaction, yes even the sodding ready salted ones :( It's something to do with their production processes. I think Gary Lineker may dance through the factory each week spreading handfuls of flour for good luck. Whatever, I now avoid them. 

56 minutes ago, rarchy said:

- For those who had energy/tiredness problems before, how long did it take you to notice a difference? The only difference I have so far noticed is I am now more regular toilet wise and have had very little bloating/gas.

My energy levels improved over a few months after the diet. It took longer the second time after my challenge. I was still noticing improvements / weird resolutions of odd symptoms up to 9 months to a year later...

58 minutes ago, rarchy said:

Thanks anyone for taking the time to read, and feel free to put any general advice you have

Lots of good advice here:

All the best!

Matt

 

rarchy Apprentice
rarchy
Posted
  • Author

Hi Matt, thanks for your reply, that is all useful information :)  I read the Newbie Info 101, very helpful! I hope that my energy increases  sooner rather than later but having read others experiences I see I could be waiting for a while.... I might try giving up (or reducing) dairy too as I also have skin problems that don't seem to be getting better (I know 5 weeks isn't long at all I am just very impatient). I had hoped that gluten would end up being the root cause of all my ailments!! ?

I will avoid Walkers crisps then, I don't even eat their crisps that often but now I can't have certain brands like wotsits I suddenly find myself craving them...  I wonder if Gary Lineker is in his underwear as he dances around spreading the flour ?

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      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
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