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Member Since 07 Jan 2013
Offline Last Active Feb 26 2015 03:02 AM

#896481 How Can You Manage A Gluten Challenge When Cc Affect You So Badly?

Posted by on 19 November 2013 - 09:10 AM

I read about how some people feel nauseous for days from the tinniest cross-contamination so I wonder how some people who been off gluten for a while can manage a gluten challenge for a few days, wouldn't eating actual pure gluten make you feel very ill instantly and thus preventing you eating any other bite of gluten for days?


Or maybe it's because I read stories of too many sensitive people which seem to be the norm on this forum?

  Renegade, this is the exact reason I will never be diagnosed by a doctor until the day they invent another way to test. I seem to be super sensitive and can become incapacitated for 3 weeks just from something supposedly naturally gluten free (e.g. plain raw cashews, beans, rice...) that was packed in the same factory as gluten.......my own diagnosis is plenty enough!!
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#893257 Possible New Neuro Symptoms Since Diagnosis - Should I Avoid Dairy

Posted by on 23 October 2013 - 03:04 PM

Greebo - thank you so much for pointing this out.  I think you may be onto something, especially as I have been eating at least a bar or two a week since my diagnosis! Shameful,  I have always loved chocolate and thought it was OK to eat this stuff as it is listed in the 2013 Coeliac UK Food and Drink Directory p. 142 as suitable.


However  (says she, reaching for a bar... before throwing it in the bin, boo hoo) you are right - it does say on the packet, "May contain milk, soya nuts and cereals" on the packet.   So this is the old CC problem....   To be fair to the brand they don't claim they are Gluten Free, I just assumed I could go with the Food & Drink directory recommendation.    


Anyway, thank you so much for your advice.  If it means an end to this feeling, I shall happily forgo chocolate forever!


Yeah....I think I must be too strict for coeliac UK - they also say that several breakfast cereals that list malted barley as an ingredient as safe because it's "within safe limits"........I prefer to use my own judgement.......I have a mantra I learned on here: check every label, every time.

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#883489 Otc Relief From Gluten Symptoms

Posted by on 08 August 2013 - 05:37 AM

Correct me if I'm wrong...but the problem with gluten for a celiac isn't that they can't digest it.......so why would enzymes work at all? Gluten is still gluten, even when our guts are healed and are digesting foods nicely, gluten will still cause the immune reaction...... 

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#876945 Cross Contamination - The Bane Of My Life!

Posted by on 27 June 2013 - 01:54 PM

Thanks everyone, I've been reading your replies throughout the day. but couldn't muster the brain power to communicate, lol.

Feeling clear at the moment, so here goes:

dilettantesteph - I agree that an elimination diet is a good way to weed out problems....I've already done that to find the intolerances listed in my signature....and I always revert back to my basic safe-foods after a glutening. Usually that's homemade from fresh ingredients chicken and veg soup, or beef and veg stew, both slow cooked to aid digestion.


Mr gluten-free in Indiana - I've never seen any testing kits here in the UK.....however, I have no doubt that the dried products that I was buying from this company were cc'd. I thought I was being clever getting my dried goods in large packs, cheaply from an Asian supermarket. The companies are called "Supreme" for the beans, and "Rajah" for the spices.

Whilst I was washing the beans, several times I thought "wow, these beans are so dusty and dirty", and I have kept a food diary for the last 5 years (yeah I did it pre-gluten-free, to help me lose weight, I used to be 278 pounds, now 138!) - I thought I had a legume intolerance, but I actually was only reacting to beans from this company.....and I also know they pack flours in the same line/facilities - there is even a warning on the packet. The warning wasn't always there (I checked), and when I noticed it I thought "ah well, it only means there's a chance of cc....I'd have to be unlucky to get caught"....but I have now reacted to their cashews (twice), but not to cashews from Sainsburiys, (I love Sainsbury's labelling policies, they say they will always label their own brand products if there is any cc that is not evident from the ingredients list!!!),also kidney beans, chickpeas, red lentils, tapioca pearls, rice flour, corn meal and various spices including turmeric....also, I purposely looked for a curry powder that was gluten-free, theirs said it had besan (chickpea) flour, so I thought it was safe - wrong! After reacting several times, I saw, hidden in the bottom corner of the bag, after the several different translations of the ingredients list was: contains wheat - What? But it wasn't listed in the ingredients!


Humandecency - it's hard to say when the withdrawals stopped, because they were mixed up with accidental glutenings - no matter how clean you think you're eating at first, there is bound to be a multitude of places gluten is still hiding! lol. I felt amazing for the first 2 weeks, then it got messy.


Notme! - Do you mean a lining to go inside the current "bowl" in the crock pot, or do you mean a new "bowl", I.e. on mine it is a metal non-stick one, I bought it specally coz you can start it off on the stove, then put in back into the slowcooker.....I used to have a ceramic one....which I wouldn't have worried about cc with, sheesh. And yeah, I always keep a food diary.....and I'm with you on the "fake" glutenings....but they wear off quickly.....my glutenings last for 3 weeks! (Bloat, digestive discomfort, SEVERE brain fog (I can't even speak, let alone think), joint pain, "C", insomnia, fever, blood sugar swings etc.


Pegleg - I think you are right.....I started to wonder a few hours ago it this was  just a continuation of the glutenings I've had.....now that I can actually type this text, I'm pretty sure you are right (although I'm making good use of spell check, and it's taking ages, lol)...I'm still going to be cautious of that crockpot (it's less than 4 mths old!).....I'm going to avoid using it for, well, quite a while, lol.


Also, I'd just like to say, although I don't post much...I wouldn't be where I am today if I hadn't found this forum - you are all wonderful! I was so sick 4 years ago that I had to leave my job as a teacher in college. Then I worked self-employed doing something else from home...but a lot of days I couldn't work at all.....nowadays I'm well much more often than I am ill!!!

Thank you. x

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#876681 Why Do I Have To Educate My Doctors?!

Posted by on 26 June 2013 - 05:47 AM

I feel your frustration....bearing in mind I am stiil mind-fogged after a cc issue.....I would like to suggest that you donate your "spare" endo to the person at the derm's office, so that she can "see what's going on"!

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#860618 We Need To Start A Thread On Stupid Stuff Doctors Say!

Posted by on 26 March 2013 - 05:20 AM

With the benefit of hindsight.....
Me: I'm so constipated, I only go once per week and it's like trying to pass a house brick.
Doctor (without asking me anything about my diet): eat more wholemeal bread.
I was already eating 8+ slices per day!

Next visit....
Me: I have terrible heartburn and keep getting acid/vomit coming up into my mouth, still have terrible C.
Doctor: Have this repeat prescription for mucaine (antacid).

Next visit....
Me: I still have the same problems as before, but I'm also really, really tired all the time and have painful itchy spots/sores all over my scalp and on my face.
Doctor: I have just the thing! There is a new birth control pill that is specifically for acne, here you go.

Next visit......
Me: I still have all the other problems, nothing is helping, and now my weight is getting into the obese category. I know I eat a healthy diet, but I just can't lose weight, and I'm just so exhausted ALL THE TIME.
Doctor: You should eat less cake, do you know how many calories there are in cake.
Me: GOBSMACKED. I don't eat cake regularly,I told you I eat healthily, in fact I have been vegetarian for 8 years.
Doctor: You can't be vegetarian or else you wouldn't be obese and constipated.
Me: speechless.
Doctor: You should eat a whole head of lettuce, a tomato, and maybe an egg for protein, but be careful not to eat too many eggs because there are a lot of calories in eggs.
Me:You are talking rubbish, there are no more than 90 calories in an egg!

Another visit..... different doctor.
Me: I have a list of on going problems that just are not getting any better (every thing already mentioned, plus more weight gain, pain in joints since age 7, plus more, and more).....I wrote it all down because I want to give you the full picture and I keep forgetting things. I hand over the list....doctor reads it...
Doctor: Well, it's obvious, you are depressed. I'm going to give you anti-depressants.
Me: no thanks.

Another doctor....
Me: I'm now morbidly obese, I really need help to lose weight.
Doctor: Wouldn't we all.

Another doctor...
Me: I have all these things wrong with me, nothing gets better and now I've found this pea sized lump under my armpit, and the milk that used come out when I squeeze my nipple has turned to blood!
Doctor: Show me. Right, I'm making you an urgent CANCER REFERRAL.
Me: scared!!!!!!

At cancer referral, mammogram and scan done.....
Me: so, what is the diagnosis?
Consultant: You have a swollen lymph node, we don't think it is cancerous.
Me: so what does that mean?
Consultant: you need surgery to remove you milk ducts.
Me: really, why?
Consultant begins to explain the procedure......but I had done my research, I knew the procedure, but I wanted to know WHY I needed it.
He refused to answer me and continued to say how "simple" it was.
So, I changed tact. Me: What will happen if I don't have surgery?
Consultant: Here, have some antibiotics and I'll see you in 5 weeks.
Antibiotics worked. Infection (that I was never actually diagnosed with!) cleared, swollen node remains, along with all the other swollen glands that I have gained through the years.....surgery? NOT NEEDED.

I have many more........I don't go to doctors anymore.....unless I know what is wrong with me and need something that is not available OTC.
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