Pissed off at sensitisation

[OrangesAndMelons]

So I've been gluten-free for about eight or nine months now. And it's starting to really annoy me that any time I take even the slightest, tiniest risk, like having a cappuccino while I'm out, I'm struck down with apocalyptic diarrhoea the next morning. I was bloody fine with gluten before. Going gluten-free has reduced my quality of life through costing me money, making me feel socially isolated, causing me a lot of hassle, and making me intermittently ill. All to avoid a couple of minor vitamin deficiencies I can fix with a pill.

Just needed to rant, sorry…

 

[cyclinglady]

I get your ranting!  It is hard to remain gluten free, but it is doable and you can heal (I did!).  Try to think of implementing strategies that can keep you safe and still experience fun, social situations.  

When I go out for coffee, I play it safe and just get coffee and add cream.  I still get to hang with my friends.   I always keep a cereal type bar in my purse, in case I need a snack or while others are eating.  I plan things like hikes, bike rides, picnics, and museum outings.  I play in an orchestra — fun without food.  

I was undiagnosed for a long time.  It is amazing how the body can adapt to illness.  Like I have a generic anemia that keeps my hemoglobin out of range, yet I can still exercise (won’t make the Olympic team though).  But malnutrition?  That unknowingly wreaked havoc on my bones.  I had some vertebrae fractures discovered two or three months after my celiac disease diagnosis due to osteoporosis (malabsorption).   I also have developed a third autoimmune disorder after a gluten exposure.    So, trying to stay healthy is important.  

Consider joining a volunteer group, get active or cook gluten free.  

Happiness is based on:

1.  Contributing to family and community (in my case, booster clubs, Girl Scouts, helping elderly family members)

2.  Connection— network with family, friends and community (orchestra)

3.  Cope — Find coping mechanisms that work for you.  For me, a bike ride or working in my garden helps me feel better. 

4.  Cook — preparing gluten free REAL food that is tasty.  Nothing like bringing people together with a picnic or around a table.  Sure, I have to host a lot, but it is worth it.  

Did I make this up?  Actually Dr. Robert Lustig MD, a Ped Endo at UCSF did.   I find it wise advice.  ?

 

[OrangesAndMelons]

3 hours ago, cyclinglady said:

I get your ranting!  It is hard to remain gluten free, but it is doable and you can heal (I did!).  Try to think of implementing strategies that can keep you safe and still experience fun, social situations.  

When I go out for coffee, I play it safe and just get coffee and add cream.  I still get to hang with my friends.   I always keep a cereal type bar in my purse, in case I need a snack or while others are eating.  I plan things like hikes, bike rides, picnics, and museum outings.  I play in an orchestra — fun without food.  

I was undiagnosed for a long time.  It is amazing how the body can adapt to illness.  Like I have a generic anemia that keeps my hemoglobin out of range, yet I can still exercise (won’t make the Olympic team though).  But malnutrition?  That unknowingly wreaked havoc on my bones.  I had some vertebrae fractures discovered two or three months after my celiac disease diagnosis due to osteoporosis (malabsorption).   I also have developed a third autoimmune disorder after a gluten exposure.    So, trying to stay healthy is important.  

Consider joining a volunteer group, get active or cook gluten free.  

Happiness is based on:

1.  Contributing to family and community (in my case, booster clubs, Girl Scouts, helping elderly family members)

2.  Connection— network with family, friends and community (orchestra)

3.  Cope — Find coping mechanisms that work for you.  For me, a bike ride or working in my garden helps me feel better. 

4.  Cook — preparing gluten free REAL food that is tasty.  Nothing like bringing people together with a picnic or around a table.  Sure, I have to host a lot, but it is worth it.  

Did I make this up?  Actually Dr. Robert Lustig MD, a Ped Endo at UCSF did.   I find it wise advice.  ?

 

Thanks — I haven't had my DEXA scan yet as they do it 12 months post-dx at my hospital. But I can't see there being any major issues (fingers crossed); my deficiencies (vit D and iron) were so slight they apparently wouldn't have treated them if it weren't for the coeliac disease.

I have limited time for extra activities and cooking… I'm in my final year at one of the world's most competitive universities and it's a nightmare ? In a university setting, almost all social events seen to involve pizza ? Or beer ?? Or pizza and beer ???

 

Was there any way for you to improve your bones, or are bones one of those once-they're-gone-they're-gone things?

[cyclinglady]

I am old!  Postmenopausal. So, building bone was extra tough.  I chose HRT for a year, lifted weights, walked, ran and ate well.   I have not gained nor loss any more bone and have experienced no additional fractures.    You should be able to recover provided you exercise and avoid gluten free junk food since you are young.  I am not even sure most doctors would test for osteoporosis in a person so young.  

I get the university thing.  Have a daughter who is in Engineering.   Very competitive.  She does not have celiac disease.  She does have some food intolerances, so she cooks a bit in the dorm kitchen (that is a bio-hazard according to her).  No time for pizza and beer (at least that is what she says ?).  

Look for a local celiac group.  You might find a celiac grandma (like me) who would drop off gluten-free goodies for you.  I do for one of my daughter’s friends who attends a local University.    We even bake at Christmas.  

[OrangesAndMelons]

39 minutes ago, cyclinglady said:

I am old!  Postmenopausal. So, building bone was extra tough.  I chose HRT for a year, lifted weights, walked, ran and ate well.   I have not gained nor loss any more bone and have experienced no additional fractures.    You should be able to recover provided you exercise and avoid gluten free junk food since you are young.  I am not even sure most doctors would test for osteoporosis in a person so young.  

I get the university thing.  Have a daughter who is in Engineering.   Very competitive.  She does not have celiac disease.  She does have some food intolerances, so she cooks a bit in the dorm kitchen (that is a bio-hazard according to her).  No time for pizza and beer (at least that is what she says ?).  

Look for a local celiac group.  You might find a celiac grandma (like me) who would drop off gluten-free goodies for you.  I do for one of my daughter’s friends who attends a local University.    We even bake at Christmas.  

A DEXA scan is a standard part of the post-diagnosis pathway here (for adults, at least — I don't know anything about the process for children), along with various blood tests and dietitian appointments. I assume it's all fairly evidence-based; the clinic's lead clinician sits on the research strategy board for Coeliac UK and is involved in other research stuff so I'm guessing the scans aren't just done gratuitously. I mean, this is the NHS we're talking about; they don't much like splashing the cash for the sake of it ?

I'm not that young, though! I'm a mature student — mid-thirties. I'm not convinced there's anything I need to recover from — before I went gluten-free I felt the same as I do now, except without the unpleasant reaction to being poisoned every so often… I get regular tests of all sorts of things because of other health issues and generally stuff seems fine, luckily. Well, fine, taking into account all the random diseases I have.

No coeliac groups locally, unfortunately. Well, there's a Facebook group, but nobody's posted on it since about 2014 ? So nice of you to help out your daughter's friend! I miss out on a lot of the gluten-free treats because they're all too sugary, unfortunately — I'm a type 2 diabetic so gluten-free cakes, biscuits etc. are out, unless they're homemade with sugar substitute.

The corridor-mates I share a kitchen with are great; I've had no ill-effects from anything I've prepared in there, though to be fair I'm pretty careful. Every so often one of us cooks for us all and people make sure I can join in — one girl did pancakes for Shrove Tuesday and did a whole gluten-free batch, which was so lovely of her. I have a toaster and a microwave in there that I don't mind people using but which I've requested people keep gluten-free, and they do.

It's just going out that's a pain in the arse.

[OrangesAndMelons]

It can be interesting cooking for the six of us together, though… there's me (gluten free, low sugar, low tyramine), two mostly-gluten-free people, a couple who don't have dairy, one on FODMAPS-but-with-some-stuff-reintroduced, a vegetarian or two, and one who keeps halal. Some of these are the same people. No vegans this year, though, luckily.

[OrangesAndMelons]

I'm also glad that going gluten-free doesn't seem to have messed up my diabetes control too much — was worried because I sometimes use gluten-free bread and pasta substitutes and they're not at all ideal for a type 2. I'd really quite like my doctor or my diabetes nurse to give me a "well done", cause my HbA1c is still indistinguishable from that of a healthy young non-diabetic, but they don't seem to be that big on positive motivation ?

[cyclinglady]

1 hour ago, OrangesAndMelons said:

I'm also glad that going gluten-free doesn't seem to have messed up my diabetes control too much — was worried because I sometimes use gluten-free bread and pasta substitutes and they're not at all ideal for a type 2. I'd really quite like my doctor or my diabetes nurse to give me a "well done", cause my HbA1c is still indistinguishable from that of a healthy young non-diabetic, but they don't seem to be that big on positive motivation ?

Good luck with getting brownie points for maintaining your blood sugar from your medical team!  ?. I get the same response. 

 Congratulations ??? for doing a great job on managing your diabetes.  ???

I use fasting and consume a low carb diet.  It works for me and keeps my meter happy.  Do I cheat?  You bet!  But never with gluten, just carbs.  ?

[OrangesAndMelons]

On 3/10/2020 at 11:02 PM, cyclinglady said:

Good luck with getting brownie points for maintaining your blood sugar from your medical team!  ?. I get the same response. 

 Congratulations ??? for doing a great job on managing your diabetes.  ???

I use fasting and consume a low carb diet.  It works for me and keeps my meter happy.  Do I cheat?  You bet!  But never with gluten, just carbs.  ?

I take 500mg of Metformin a day, which I consider cheating, to be honest… but, it lets me eat carbs and, because of the vagaries of the NHS, taking diabetes medication means I don't have to pay an admin charge to get any of my prescription drugs. Plus, metformin is just generally a useful drug.

I was LCHF for a year and despite enormous quantities of saturated fat, which diabetes nurse was very unhappy about, my blood lipids improved massively, which I found interesting.

Well done to you on your diabetes control too ? 

 

(Sorry for slow response — the notification went to my spam for some reason.)