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5 Tips to Get the Most Help Possible from Your Doctor Appointments - Lottie Ryan
Do you often leave the doctor's office overwhelmed, or disappointed that you didn't get the answers you need?

Great advice, as always. Here’s the Cliff’s Notes version:

1) Take a list of symptoms and questions.

2) Get the list out  and go through it one item at a time.

3) Know your illness, its symptoms, the medications and side effects.

4) Join an online support group. Before you go to the doctors run your questions by your friends in the group. 

5) Ask two simple questions at the end of every appointment: “Is there anything else you can do to help me right now?” and “Is there anything else you think I can do to help myself?”

What is Coeliac Disease?

Hello everyone! I have refractory coeliac disease, so I thought it would be a good idea to make a post explaining coeliac disease and my personal experience with it.

I made a post a few months ago on my book blog on coeliac disease, so I have just altered it. I will probably update this post a few times, so the page on my blog will be the most up to date version.

Coeliac (or celiac) disease is an autoimmune condition which causes the body to mistake the gluten protein as an invader and ‘attack’ it in the small intestine. These leads to something called villi atrophy- in which the finger-like projections in the small intestine are destroyed and the whole small intestine becomes inflamed. Because of this, the body suffers from digestive issues, malabsorbtion and malnutrition.

This leads to many horrible symptoms such as:

  • frequent diarrhea
  • abdominal pain and cramps
  • gastritis
  • nausea and vomiting
  • chronic fatigue
  • bloating
  • weight loss
  • constipation
  • mouth ulcers
  • neurological symptoms such as dizziness, headaches, vertigo
  • muscle cramps and joint pains

The inflammation in the small intestine leads to gastric symptoms whilst the malnutrition, vitamin deficiencies and dehydration cause some of the neurological symptoms and fatigue. There is debate amongst the scientific community on the effect of coeliac disease on the rest of the systems in the body.

I was diagnosed with coeliac disease in November 2013 after being ill for around 6 years. The average time it takes for a diagnosis in the UK is between 13 years! By the time I was diagnosed I weighed 6 stone, and had severe dehydration and nutrient defeciences. I was told multiple times by doctors that I was suffering from IBS, without them carrying out a simple blood test to make sure nothing more sinister was going on.

Many people think that coeliac disease is not a serious disease, that it is just some sort of food intolerance that makes people a little windy. No. While the severity of symptoms do vary, it is a serious condition which left untreated can lead to an increased risk of bowel cancer, osteoporosis and neurological conditions. Also, as coeliac disease is an autoimmune condition, we are at greater risk of having other autoimmune conditions such as asthma, arthritis, Chron’s disease, lupus etc.

Even after being diagnosed I am still suffering from health conditions because my small intestine has not yet recovered. I have refractory coeliac disease, which means that despite adhering to a strict gluten free diet I am still suffering from symptoms of coeliac disease, with elevated levels of gluten antibodies. I am still underweight, I am still extremely weak and I still suffer from neurological and digestive symptoms.

In Europe, the health related quality of life of people with coeliac disease is markedly lower than the normal population despite a gluten free diet.


Whilst it is wonderful that coeliac disease can usually be treated so effectively with a gluten free diet, it should still be seen as a serious disease which can cause a lot of suffering and remains with us all of our lives.

In the press and media recently it seems to be popular to make a gluten free diet and people with coeliac disease the brunt of stupid jokes. I am not weak, it is not funny to shove a pie in a coeliac’s face, and no you are not gluten free intolerant. Stop. For me, a gluten free diet is not a lifestyle choice, it is keeping me alive.

There are several issues at the moment that need addressing:

  • the negative perception of coeliac disease by the public and media
  • the horrendously long time it takes to get a diagnosis
  • the quality of treatment once diagnosed
  • the price and quality of gluten free goods
  • the lack of knowledge and awareness of coeliac disease among the public and health care professionals

If you want to learn more about coeliac disease here is the Coeliac UK website, the NHS page, and the Wikipedia page

If you are a newbie coeliac, please message me for advice on GF diets and other things I can help you with!!

Thank you!! Emily xx

(if there are any issues with this post or something makes you uncomfortable about it, please message me and I can change it right away!)

Dear Nausea,

I’m breaking up with you. We’ve been together for almost ten years now, but I feel like the time has come for you to fuck off. It’s not me, it’s you. I think we should start seeing other people. I want more out of life, but you’re kind of a fun-sucker. We’re just complete opposites. So, yeah. Pack your things and go.

Sincerely,
I don’t love you and I never did

Me: Starts replying to craigslist post about free kittens by writing “I am only 24, but I have a debilitating chronic illness so I’m not able to work or go to school, so I would actually be home and able to care for the cats 24/7 pretty much since I don’t leave that much”

Me: Immediately realizes how depressing and creepy that sounds and changes it to “I will be home most of the time during the day, and will have a lot of free time to spend with the baby kittens and care for them. “

update

ok so here’s the explanation for yesterday’s post

I was able to make an appointment with my doctor for Thursday, so hopefully I will know more then. Right now I’m just going off of the internet to explain these results, so take that with a grain of salt.

So here’s whats going on for you & some other people I know are worried. thankfully nothing thats like ER level urgent or immediately life threatening. I had multiple tests come back as highly suggestive of lupus - there was one that only has a false positive rate of 1 in 200 - and I have at least 2 other numbers suggesting it, plus the fact my kidney function has gotten worse and it was already at the very bottom of the normal range. So the most likely conclusion is that i a) have lupus, and b) its attacking my kidneys. This was really unexpected since I didn’t have any symptoms of lupus and im lucky we even ran the tests bc i’ve always been negative for autoimmune stuff and my Dr was confident I didn’t have any symptoms of it. But yeah this is totally new, and will probably be on top of the EDS diagnosis, not instead of it, leaving me with a genetic connective tissue disorder and an autoimmune connective tissue disorder, quite a pair. although it throws everything I thought I understood about my health into question which kinda sucks in its own right. Treatment options for lupus are pretty scary - at least to me, being totally new to AI stuff, but I have no idea whats gonna happen so I just need to wait a couple more days before i get into that. I’m guessing a kidney biopsy will probably be in the near future & probably lots of other tests. 

Anyway, life is weird and unexpected. I’m just trying to roll with it, knowing that my life has gone all kind of unexpected places before & I’ve often not just survived but thrived, even when things got tough. Let’s do this

Something the social justice tumblr community could really really help the disabled community out with is tl;drs.

Like I’m sick and exhausted and I can’t focus and my eyes hurt and I am like this 95% of the time but I’m still intelligent and I want to educate myself. I just cant read your 1000 word blog posts or 5 paragraph q&as

I’m so glad you are all putting this information out there but please could you lend a hand to those of us for whom all that just isn’t accessible?