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Worried and frustrated by coeliac sister

(10 Posts)
clairewitchproject Mon 22-Dec-14 23:32:53

My sister is in her mid 40s and was diagnosed coeliac after chronic severe anemia at about age 30. However she then went on to become a volunteer and worked in a number of countries, moved around a lot and is currently a mature student (ie not much money). The crucial part of her doctors' notes which confirm the coeliac tests are lost and so her diagnosis is considered 'unofficial' (though she had endoscopy etc) and she doesn't get any prescriptions or anything. She is always generally chronically unwell when in this country - much healthier when in Eastern countries (eg China) where diet isn't wheat based - and I think she is really irresponsible about her diet. She doesn't eat any actual wheat and if she occasionally does (someone fed her wheat noodles recently as they thought it was all in her mind) she has severe vomiting and diarrhea. However she eats ordinary oats (not gluten free) ALL THE TIME - every day she has big bowls of porridge - she also eats any old flapjack and eats gravy and also has sausages which are not gluten free, because she loves sausages. She says she can't afford gluten free sausages, I say she can't afford not to! She has a scaly rash on her elbows which I think is dermatitis herpetawhatever it is, but the doctors (because they think she is gluten free) think is something else. She also has chronic inflammation, gets frequent chest infections, and has severely aching joints and bones especially in Winter. Could constant low level contamination cause these kind of symptoms? She thinks because she isn't actually vomiting she has it 'under control'. She also has chronic anemia, milder than when she was eating a normal diet. I am worried she is going to die young because she is too stubborn to properly research her condition and the risks of minor exposure to low levels of gluten. Am I being overprotective?

Iamyourmil Mon 22-Dec-14 23:40:44

Tell her to eat potatoes, cheap and naturally gluten free. Jacket potatoes, shepherd pie. Casseroles. Sweetcorn. Chickpea flour in Asian shops. She needs to be very careful.

clairewitchproject Mon 22-Dec-14 23:45:51

Yes she eats all that stuff. Other than oats, gravy and sausages she tends to eat meat and veggies, bakes GF cakes etc. I am just worried that she eats loads of oats that are potentially trace contaminated - and the fact that she is chronically unwell suggests to me that there is an impact, but she thinks it is just other coincidental auto-immune conditions, whereas I suspect a chronic inflammation from the low level exposure....

LucyBabs Mon 22-Dec-14 23:57:22

Yes Shea definitely in denial with regards to the food she's eating with gluten.

My Mam was diagnosed at 60 after 5 years of constant diarrhoea and vomiting! I don't know how she coped!

When she cut the gluten and I mean she was scrupulous about what food contained gluten, she was so healthy. It was so tough for her. I can't imagine cutting out so many foods after many years enjoying them.

She did start to cheat after a year or so and although she wasn't as ill as before she lost weight again and had more chest infections, viral infections than is normal.

Your sister is kidding herself if she thinks she can eat gluten and be healthy.

I'm not sure what advice I can give. Ultimately it's up to your sister but I know how frustrating it is for you. I had many arguments with my Mam about her diet.

LucyBabs Mon 22-Dec-14 23:58:59

Also you're not being over protective. Your sister is lucky to have you smile

peacoat Tue 23-Dec-14 00:01:56

Your SIL is me. However I still doubt myself and the diagnoses. (I eat normal oats regularly - because for me that's manageable rather 2x price gluten free oats)

No one can control anyone but themselves. You can't make her become gluten free until she decides it's worth it for her own sake. So please don't feel responsible for her eating.

Personally, I'm discovering I'm not coping with high FODMAP foods. Maybe ask her about these if she's genuinely interested in her diet. It's not so much about gluten (which I really struggle with, but its not the full picture), but other foods as well.

WowWowSauce Mon 29-Dec-14 23:01:12

Dermatitis herpetiformis doesn't sound like what your sister has - it's red and insanely itchy, and blisters. It's also really unusual in women, although I have it.

It doesn't sound like she's coping well with the diagnosis though. Was there a time when she did get GF food on prescription, and did she stick to it? Has she seen a dietician, or was her diagnosis lost early on? Could she be retested?

GF sausages are amazing - they're usually just meat and flavour! I haven't noticed them costing any more. I was advised to avoid oats for a year after diagnosis and then reintroduction could be monitored. I think that there are cross reactions, on top of the potential contamination issues.

It's also the case that one auto-immune problem often can lead to another: has she been tested for hypothyroid? The scaly thing sounds more like a thyroid problem.

Sorry for the rambling..

CuntCourtIsInSession Sat 10-Jan-15 17:50:15

She is in denial. Tell her about my symptomless and therefore undiagnosed coeliac disease, resulting in osteoporosis and spinal fractures. She badly badly needs to sort herself out mentally on this matter. She is storing an absolute world of ill health up for herself.

BearPear Sat 10-Jan-15 17:53:54

My DD eats regular oats (but they were introduced under the control & testing of the paediatrician and dietician when she was about 10). She isn't allergic to them at all.

CuntCourtIsInSession Sat 10-Jan-15 17:56:12

Most gastros will instruct you to eat no oats of any kind for two years, and then to reintroduce only 'pure oats' (so not basic porridge) as the risk of cross-contamination is just uncontrollably high, BearPear. You have likely just been lucky, to be honest.

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