So… I'm a coeliac

[Ranchers Wife]

Well, it's obviously up to you, how strict you want to be in order to avoid cross contamination.

But why would you adopt less strict UK standards, if Celiacs in other countries have hurt themselves with cross contamination with used 'gluten sponges' and/or communal condiment jars, in which someone has swiped a piece of wheat bread with mustard and then dipped the same (now glutened) knife in the mayonnaise?

 

If you can't make your (shared or not) kitchen space 100 percent gluten free, you will need to take some precautions. Either you have your own, clearly labeled condiments that only you use, or use condiments in squeeze bottles that nobody sticks a knife into.

 

And there's lots of other precautions to take. The good news is that once there's a clear protocol for all the kitchen users to follow, and all the users are on board and follow it... you are much less likely to get sick in your own kitchen space.

 

Are you able to take some other people to your nutrition consultation? It might be really valuable to you if your partner, and perhaps your dad, could go along. It takes a while, and a lot of mistakes, before you get really good at staying clean and can heal up from the autoimmune damage.

 

I'm sorry that you have to deal with yet another diagnosis involving dietary restriction... but if you think of it as, "Hey! We figured out the source of the autoimmune vortex driving most of my health issues... and I will probably get a LOT better with my new dietary changes!" ...it might go over with you better.

Most of the experienced posters here are fully expecting that you will have a lot fewer mental and physical issues once you are on a strict, clean gluten free diet for a while.

[OrangesAndMelons]

9 minutes ago, Ranchers Wife said:

Well, it's obviously up to you, how strict you want to be in order to avoid cross contamination.

But why would you adopt less strict UK standards, if Celiacs in other countries have hurt themselves with cross contamination with used 'gluten sponges' and/or communal condiment jars, in which someone has swiped a piece of wheat bread with mustard and then dipped the same (now glutened) knife in the mayonnaise?

 

If you can't make your (shared or not) kitchen space 100 percent gluten free, you will need to take some precautions. Either you have your own, clearly labeled condiments that only you use, or use condiments in squeeze bottles that nobody sticks a knife into.

 

And there's lots of other precautions to take. The good news is that once there's a clear protocol for all the kitchen users to follow, and all the users are on board and follow it... you are much less likely to get sick in your own kitchen space.

 

Are you able to take some other people to your nutrition consultation? It might be really valuable to you if your partner, and perhaps your dad, could go along. It takes a while, and a lot of mistakes, before you get really good at staying clean and can heal up from the autoimmune damage.

 

I'm sorry that you have to deal with yet another diagnosis involving dietary restriction... but if you think of it as, "Hey! We figured out the source of the autoimmune vortex driving most of my health issues... and I will probably get a LOT better with my new dietary changes!" ...it might go over with you better.

Most of the experienced posters here are fully expecting that you will have a lot fewer mental and physical issues once you are on a strict, clean gluten free diet for a while.

Thanks for your post!

In terms of strictness, the easier something is to stick to, the more likely I am to stick to it, so I want to find the least restrictive set of rules that's actually effective — if I make it more difficult than it needs to be, I'm more likely to get emotionally burnt out, make silly mistakes, or use up my willpower reserves. I'm guessing it will take time to work out how reactive I am and where my personal levels should be set.

At home, there'll be no gluteny products used anyway; my partner is de-glutenifying the kitchen before I get home from uni and will only be eating gluten outside the house, except during term time when I'm away (his decision — I didn't ask him to do that, he just decided it would be easier). College is different, but I have very little cooking equipment here. A small nonstick pan that's only ever had baked beans in it, a larger enamelled pan, an oven tray, and some wooden spoons I've no issues chucking. And a couple of knives. My own sponge, because I'm not sure what it is the other students do to sponges, but seeing the condition they were left in, after my first few weeks here I decided to jealously guard my sponge and keep it in my room ? At home we have no nonstick but do have some cast iron skillets — if necessary, those can be stripped back and re-seasoned. Sieves and porous stuff will get chucked obviously but there's not a lot that needs it. So most of this "throw away everything" stuff isn't so relevant to me. But I can't see the sense in throwing away, for example, a pasta machine if it's for contamination issues — those things can be fully dismantled, cleaned and reassembled.

There's never going to be such thing as 100% gluten free and there's always going to be ever-diminishing returns on efforts to eliminate any substance, so given above stuff about there being a trade-off between efficacy and doability for me, I'm probably going to be leaning more towards the Coeliac UK approach and seeing how it goes; obviously I'll get stricter if they tell me my gubbins aren't healing up. And I'll be using some of the tips from here that will make life easier too, like the greaseproof on the countertops, and the toaster bags. But there is An Absolute s$#&-Tonne of stuff going on in my life at the moment, some of which is more time-sensitive than re-growing villi that have probably been useless stubby little buggers for the past 15 years and can probably cope with a few months more if it turns out I'm not being quite strict enough! My uni is super, super intense.

The information session I'm going to on my own, since I'm a couple of hours' drive away from home and I don't think it's reasonable for my partner to do that much driving for an educational session ? (and I might surreptitiously record it anyway…) but my appointment with the consultant gastroenterologist is right before I go home and my partner will be here for that before driving me back. Not sure when the appointment with the gastroenterology dietitian is; probably at some point after that, which will mean schlepping up to my uni town again ? It's really annoying being two hours away from all my medical people during vacations!

I remain very sceptical as to whether my other health stuff will majorly change — the bipolar disorder comes from the side of the family without gut problems and was just as severe in those family members as it is in me. And I went crazy way before I ever started having gut problems. So I  really don't think coeliac disease is the source of the bipolar disorder. The diabetes was caused by antipsychotic medication for the bipolar disorder <sigh> My bipolar disorder is now entirely under control with lithium (HOORAY — I think I'm actually better now, mentally, than I've been at any point in my adult life before now), my diabetes control is already excellent, and ASD is… well, ASD, not an illness that got brought on by anything or is going to get cured by anything. What I'm hoping for is to be less tired and achy and a bit clearer-headed, with better guts, but I really don't expect any change on the illness front. Oh, except I'm kind of hoping a couple of unpleasant skin things I have (dishydrotic eczema/pompholyx and hidradenitis suppurativa) might improve <crosses fingers> ? I'd also like to lose 40 kilos and get a tan and blonde hair pls thank u.

Oh man I wrote an essay. Will be thinking some more about your post. Thanks!

[OrangesAndMelons]

Reading some of the forum posts on this website, I don't understand how so many people's doctors are so bad. My GP ran the test, and when I got a positive result on the serology he referred me to the gastroenterologist at the local hospital who specialises in coeliac disease for an endoscopy, telling me that in the meantime I should keep eating gluten; there was a minor admin delay, but I got the endoscopy (done by a different gastroenterologist), they took the samples (four of them, with one being from the duodenal bulb), and when the histopathology came back positive they sent me an appointment for a group info session and a consultation with the coeliac GI doctor. And I'll be seeing a specialist dietitian. It all seems like a fairly normal routine thing; another girl at my college went through exactly the same process. How are there all these useless GPs and even gastroenterologists around who have no bloody idea about a common illness? I mean it's one of a gastroenterologist's bread-and-butter diseases (ahem), surely? And there are very simple guidelines out there for coeliac disease diagnostic processes.

Weird.

[Ennis-TX]

6 minutes ago, OrangesAndMelons said:

Reading some of the forum posts on this website, I don't understand how so many people's doctors are so bad. My GP ran the test, and when I got a positive result on the serology he referred me to the gastroenterologist at the local hospital who specialises in coeliac disease for an endoscopy, telling me that in the meantime I should keep eating gluten; there was a minor admin delay, but I got the endoscopy (done by a different gastroenterologist), they took the samples (four of them, with one being from the duodenal bulb), and when the histopathology came back positive they sent me an appointment for a group info session and a consultation with the coeliac GI doctor. And I'll be seeing a specialist dietitian. It all seems like a fairly normal routine thing; another girl at my college went through exactly the same process. How are there all these useless GPs and even gastroenterologists around who have no bloody idea about a common illness? I mean it's one of a gastroenterologist's bread-and-butter diseases (ahem), surely? And there are very simple guidelines out there for coeliac disease diagnostic processes.

Weird.

Most have ill-conceived notions of celiac and its symptoms. Some bad research or assumptions can leave many to think it is just a childhood disease, that it can be grown out of, that it must present with diarrhea, and people must be skinny. There is also the fact there is no money in treating the disease....A gluten-free diet is not a prescription they can make money off of so they will try every other label. 

I went through 5 doctors thinking I was dying way back when before we even had one think it might be gluten related, even then I was given the wrong approach (long story). As you mentioned there are many "horror" stories of people here trying to get a diagnosis.

[OrangesAndMelons]

It's bonkers. I don't think the making-money part is relevant in the UK because doctors have no financial interest in the treatment.

I also got a really informative leaflet explaining the condition, and also what will happen regarding my treatment:

I'll have an appointment with the gastroenterologist, who'll explain the condition and what I need to do, and an appointment with the specialist dietitian. They'll do blood tests for deficiencies, and give me some extra vaccinations, and prescriptions for any supplements I need, plus a membership pack for Coeliac UK and some gluten-free food (sadly, I won't get any on an ongoing basis, as my area doesn't give out gluten-free food on prescription any more).

A couple of months after that, I see the dietitian again and they do some more blood tests, and I can see the doctor if I have any concerns.

Then (unless I have any problems in the meantime, in which case I can call to talk to a dietitian or make an appointment to see the doctor) I get an appointment for a repeat endoscopy and a bone density scan nine months after starting the gluten free diet, then an appointment with the gastroenterologist to discuss the results of these, with more blood tests and another dietitian appointment.

Then after that it's annual checkups unless I have problems in the interim.

I'm not necessarily going to be living here by then, though — I hope it's the same elsewhere in the UK, though I suspect not…

[OrangesAndMelons]

This is the first 3 pages of the information leaflet I was sent with the letter stating my diagnosis.

It won't let me upload any more than that.

[OrangesAndMelons]

The rest of it reads:

 

What happens if I accidentally have some gluten?

If you accidentally have some gluten you will come to no serious harm but may experience symptoms.
Unless you are very careful to remove all the gluten from the diet, you will receive no benefit from your gluten free diet as the effects of even a small amount of gluten can last for a long time. This can be particularly difficult when out, eating with friends or travelling. Some people with coeliac disease find that they have severe symptoms after eating a tiny amount of gluten — such as profuse diarrhoea or vomiting — and they find it easier to stick to the diet.

 

Why is it important to stick to my gluten free diet?

Even though many people claim to have no symptoms at all when first diagnosed, the majority do actually feel better on a gluten free diet.
People who do not stick to a very strict gluten free diet are at risk of complications of coeliac disease that can be life-threatening. However, on a gluten free diet the risk of severe complications of coeliac disease is low. The average life expectancy of celiac patients on a gluten free diet is exactly the same as for people without coeliac disease.

 

What are the complications of coeliac disease?

Weak bones: One of the vitamins poorly absorbed in coeliac disease is vitamin D, which is required to keep bones healthy. Patients with untreated coeliac disease can have weak bones that fracture easily. However, the condition of the bones can be largely restored by adherence to a strict gluten free diet. Your bone density (strength) will be measured in the coeliac clinic and additional treatment can be started if necessary to strengthen the bones. With proper care, the risk of bone fractures in coeliac disease can be only very slightly higher than in patients without the disease.
Impaired immunity: For reasons that are not well understood, patients with coeliac disease can be susceptible to certain bacterial infections such as pneumonia and meningitis. This risk is rapidly reduced to normal levels by adherence to a gluten free diet.
Cancer: The most feared complication of coeliac disease is the development of cancer in the small intestine. This is almost certainly the result of longstanding inflammation and damage in the intestine due to the reaction with gluten occurring over many years. There are two types of cancer in the intestine of which one — a cancer of the immune cells called a 'T-cell lymphoma' — is almost unique to coeliac disease. However, this cancer is extremely rare and the risk of this condition is almost completely removed by adherence to a gluten free diet.

Are there any conditions that are associated with coeliac disease?

One of the reasons that you will be invited to attend the coeliac clinic for long term follow up is that there are certain conditions that can be associated with coeliac disease. Fortunately the majority of these can be treated easily. It is important to consider the possibility of these developing if you should experience new symptoms and for the tests to be carried out regularly.

— Dermatitis herpetiformis (or 'DH'). This is a very rare condition where the skin is also damaged by eating gluten (it is not due to exposure of the skin to gluten). It causes an intensely itchy blistering rash, often on the elbows, buttocks and or knees. While this will get better with a gluten free diet, this takes some time to respond and there is a drug called 'Dapsone' that can be used to speed up the improvement. However, this drug does not help heal the intestine.

— 'Autoimmune conditions': Patients with coeliac disease actually have a very well developed immune system — so powerful that it unfortunately attacks things that it should not, such as gluten! Certain organs can also be targeted by the body's own defenses and cause 'auto-immune' (or 'self-immune') conditions such as:
   - Thyroid disease: The thyroid gland can be either over or underactive. This is easy to detect with blood tests and easily treated if necessary with tablets.
   - Pernicious anaemia: This is due to damage to the lining of the stomach and results in a loss of vitamin B12 that is essential for making blood. This can be easily detected with blood tests and treated by an injection every three months.
   - Diabetes: There is an association of diabetes with coeliac disease — but only the type of diabetes that requires insulin treatment and begins in early life. Adults that develop celiac disease rarely go on to develop this type of diabetes, whereas about 1 in 10 diabetic patients may become coeliac.
   - Addison's disease: This is caused by damage to the gland that produces the body's own steroids and can be detected by a simple test, and treated with tablets to replace the body's steroid production.
   - Rheumatoid disease: This can be caused by an immune reaction to the joints and requires medications to control the arthritis in the majority of cases.
   - Primary biliary cirrhosis: this is a reaction against the tubes that drain bile from the liver and can result in itching or yellow discoloration of the skin (jaundice).

Can I pass coeliac disease on to my children?

Yes. The risk of a close family member (such as children or parents) having coeliac disease is about 1 in 10. This is inherited by the genes as it cannot be 'caught' like an infection. As coeliac disease can present at any age, it is not uncommon for parents to be tested positive for the disease after one of their children has become coeliac. 
Adults should be tested every two years with blood tests and if they develop symptoms at any stage.
Children should be tested if they have symptoms or at the age of 16 years if they are entirely well with no symptoms at all.
 

[OrangesAndMelons]

Went to the info session (ON THE BUS! ON MY OWN! praise all the gods for the efficacy of lithium) and it seems standard procedure round here is to keep eating (gluten-free) oats until the second biopsy. (They don't do a gluten challenge and third biopsy round here any more, thankfully — response to the gluten-free diet at second biopsy is considered definitive.)

It was quite funny — the gastroenterologist seems to have a catchphrase, and it's "LIFELONG AND ABSOLUTE!" — he must've said it half a dozen times ?

The presentation included several pictures of delicious-looking gluten-packed foodstuffs ?

[Ennis-TX]

1 minute ago, OrangesAndMelons said:

Went to the info session (ON THE BUS! ON MY OWN! praise all the gods for the efficacy of lithium) and it seems standard procedure round here is to keep eating (gluten-free) oats until the second biopsy. (They don't do a gluten challenge and third biopsy round here any more, thankfully — response to the gluten-free diet at second biopsy is considered definitive.)

It was quite funny — the gastroenterologist seems to have a catchphrase, and it's "LIFELONG AND ABSOLUTE!" — he must've said it half a dozen times ?

The presentation included several pictures of delicious-looking gluten-packed foodstuffs ?

Interesting, sounds like the second biopsy with gluten-free but with oats might be a way of testing to see if you react to oat the same way (10% of celiacs also react to oats even Gluten-free ones). Love how they embrace the life long and absolute, oddly we have had many controversial stories of what GI docs have told members.

 

[OrangesAndMelons]

20 minutes ago, Ennis_TX said:

Interesting, sounds like the second biopsy with gluten-free but with oats might be a way of testing to see if you react to oat the same way (10% of celiacs also react to oats even Gluten-free ones). Love how they embrace the life long and absolute, oddly we have had many controversial stories of what GI docs have told members.

 

Yes, we got explanations of gliadins, glutenins and avenins, and the clinic's rationale for initial inclusion of oats. The second biopsy isn't just for that, it's to check response more generally and also to confirm (or otherwise) the diagnosis.

My doctor is this guy: https://www.coeliac.org.uk/campaigns-and-research/our-research-conference/research-conference-2017/current-challenges-in-the-management-of-coeliac-disease/ — this is quite an interesting video that discusses (among other things) why my clinic does what it does.

[OrangesAndMelons]

It seems that the info in the pamphlet about annual followup is out of date.

[GFinDC]

That's nice to have follow up by the doctor.  They should monitor your vitamin and mineral levels for sure.

[Ranchers Wife]

"Went to the info session (ON THE BUS! ON MY OWN! "

Good Job!!!

I hope you will keep us updated.

It's great to hear that you have a really well informed gastroenterologist. My Celiac issues were overlooked by three different gastroenterologists. First, in my college years (1990 or so), second in 2005 and most recently in 2015 at a well respected University teaching hospital. Everyone was so busy trying to diagnose Crohn's disease, and never did any Celiac testing.

 

Unfortunately I am self diagnosed. It could be non-celiac gluten sensitivity... but I will have a big, unpleasant reaction even to a very small amount of wheat straw dust, inhaled. Not to mention any ingested gluten. So I assume that it's Celiac, and am super careful.

Anyway, I wish you the best of luck with what is sure to be extra challenging, with your cooking difficulties.

 

 

[OrangesAndMelons]

33 minutes ago, Ranchers Wife said:

"Went to the info session (ON THE BUS! ON MY OWN! "

Good Job!!!

I hope you will keep us updated.

It's great to hear that you have a really well informed gastroenterologist. My Celiac issues were overlooked by three different gastroenterologists. First, in my college years (1990 or so), second in 2005 and most recently in 2015 at a well respected University teaching hospital. Everyone was so busy trying to diagnose Crohn's disease, and never did any Celiac testing.

 

Unfortunately I am self diagnosed. It could be non-celiac gluten sensitivity... but I will have a big, unpleasant reaction even to a very small amount of wheat straw dust, inhaled. Not to mention any ingested gluten. So I assume that it's Celiac, and am super careful.

Anyway, I wish you the best of luck with what is sure to be extra challenging, with your cooking difficulties.

 

 

Thanks!

 

I hope he's well-informed — he seems pretty good, but I haven't spoken with him 1:1 in an appointment yet, just the presentation where he answered one of my questions.

 

That's heavy-duty sensitivity you've got there… I'm not surprised you're super-careful.

 

I might try making gluten free muesli…

[OrangesAndMelons]

The other girl at my college who was diagnosed a few months before I was, in pretty much the same way I was (GP doing a coeliac test "while we're taking bloods anyway" followed by referral, endoscopy, etc.), said the clinic (including the doctor) was really good. So fingers crossed.

[Crispy chick]

I don't think the UK service is the same everywhere. My poor sister was diagnosed about 8 years ago. No dietician, no bone scan. No follow up. 

I'm awaiting my biopsy results. To get to this point has been a catalogue of errors. E. G gastro told me to stop eating gluten as would wait a year for endoscopy. I stop. 13 days later get an appointment which I then had to postpone. Get into the endoscopy room... I'm not even down for celiac biopsies, just looking into stomach. I persuaded him. Couldn't make this up!!!! 

[OrangesAndMelons]

54 minutes ago, Crispy chick said:

I don't think the UK service is the same everywhere. My poor sister was diagnosed about 8 years ago. No dietician, no bone scan. No follow up. 

I'm awaiting my biopsy results. To get to this point has been a catalogue of errors. E. G gastro told me to stop eating gluten as would wait a year for endoscopy. I stop. 13 days later get an appointment which I then had to postpone. Get into the endoscopy room... I'm not even down for celiac biopsies, just looking into stomach. I persuaded him. Couldn't make this up!!!! 

Well that's just crap isn't it? Especially your sister — no DEXA scan even! Are you in the same area? Have they even seen the NICE guidelines? Those are supposed to make sure you get the right treatment regardless of area but I guess they're no use if they're ignored.

Well done for getting him to take the biopsies, though; not an easy thing to get a doctor to do a procedure he's not down to do.

I think Addenbrooke's is probably unusually good. I did have to wait what felt like ages for the biopsy — 7 weeks between being referred by my GP and the procedure — but I think that was partly because of an admin delay, and in the great sweep of things not a big deal. I vaguely remember hearing they prioritise coeliac biopsies so that patients don't get fed up and take it upon themselves to go gluten free in advance of the biopsy.

[Ranchers Wife]

Hi there Oranges and Melons, 

I was thinking of you

How are you doing, if you care to share?

[OrangesAndMelons]

3 hours ago, Ranchers Wife said:

Hi there Oranges and Melons, 

I was thinking of you

How are you doing, if you care to share?

Hi! Lovely of you to ask ?

I started the gluten-free diet on Monday and it's not been too bad so far; my partner had already got meals and stuff in before bringing me back from uni.

Monday was also the day of my gastro appointment, which was a little frustrating; they gave me the registrar, rather than the consultant who's a bit of a coeliac expert. The other people in the waiting room saw the consultant… I wonder if it was because they were all quite a lot older than me and it was assumed that they'd be more complex… but I had several questions the registrar couldn't answer. He pretty much ignored several of them ? And I have to wait 2 months to see the dietitian — not because of resources, but because that's their standard pathway now apparently. But I'm not schlepping all the way to Cambridge for a dietitian appointment…

Mostly the appointment was okay, I was just frustrated that he was giving me a lot of generic info I knew already rather than answering my questions about things like tyramine absorption. I did discover that I have anaemia, which might partly explain where my periods went (though one of my meds is involved too); I've been complaining at doctors about that for years now as they've got lighter and lighter to the point there's almost nothing left ?

Oh, I also shouted at a yoghurt in Sainsbury's for having been produced in a factory that also handles barley ? (It's a brand I liked because there are very few flavoured yogurts without added sugar, and someone's it's useful to just be able to grab a pot of fruit yoghurt rather than spooning out plain yogurt, adding fruit, etc.)

But: Seabrook's crisps are gluten free!!! ?????

[OrangesAndMelons]

I mean it's very handy, not having periods, but I kept complaining to them because I was worried there was something wrong. It's not usually a great sign ?

[knitty kitty]

Low Vitamin D levels will cause menstrual cycle irregularities, amenorrhea, long or short periods, and infertility.  Please get your Vitamin D level checked! 

37 minutes ago, OrangesAndMelons said:

I mean it's very handy, not having periods, but I kept complaining to them because I was worried there was something wrong. It's not usually a great sign ?

 

[OrangesAndMelons]

1 hour ago, knitty kitty said:

Low Vitamin D levels will cause menstrual cycle irregularities, amenorrhea, long or short periods, and infertility.  Please get your Vitamin D level checked! 

 

The gastro said he checked for deficiencies… dunno what it included, the letter just mentions the anaemia ? Hopefully they checked that. Why will they not give me adequate information? I had to negotiate just to get my detailed histopathology results.

I mean, generally they've been really good. I just personally like to have as much info as possible.

[OrangesAndMelons]

I feel pretty confident they're doing everything they need to do and should be doing, but I want more info — it's my body ?

[OrangesAndMelons]

How can I be a coeliac? That's one of those other-people things ??

[Ranchers Wife]

Yeah, sorry about the being Celiac thing. Crying in the grocery store in the first months after diagnosis is unfortunately a Real Thing for a lot of us.

I don't have anemia, but gluten makes my monthly cycle go weird. Gets crazy heavy and irregular.

Sorry it's been an issue to get the exact information that you want from your doctor... but glad to hear that you are in good hands at your clinic.

You have a lot of help here, anyway, for the non medical questions and diet information.

Also glad to hear that your partner is helping you out with all of this. He is of course welcome here too if he wants information or just commiseration.