If awareness of coeliac disease amongst doctors were high, this is how my story might read:
“Throughout my teenage years, I tested positive for anaemia, and my doctor suggested it could be coeliac disease. I took a blood test, followed by a biopsy (all the while still eating gluten) and coeliac disease was confirmed. I switched to a gluten-free diet and felt much better, thank you.”
Unfortunately life is messy and symptoms come and go. Some doctors are great, others are dangerously negligent assholes who think everything is “all in your head”. None of this is helped by the fact that in London it’s pretty common to see a different doctor every time you make an appointment, so the variety of symptoms that make up coeliac disease often never get put together.
For Gut Feeling Week, a lot of people have been sharing their diagnosis stories, and I wanted to share mine, but I’ve been putting it off. I would say I am about 80% of the way to full health, but thinking about diagnosis (and before) brings up painful memories about how ill I was, how much I suffered and thought it was normal.
Coeliac disease is heavily under-diagnosed, partly because its symptoms can have very little to do with the gut, manifesting all around the body. The heavy handed “diagnosis” of IBS among GPs may also be to blame. I am telling you my story, with all the unpleasant and personal details, in the hopes that it will encourage more people to get tested.
I should point out that you may experience none of what I have and still have coeliac disease. Everyone’s story is different. But if you recognise a symptom, please talk to your GP about arranging a blood test for coeliac disease.
For more information about coeliac disease and this year’s Gut Feeling week, please visit the Coeliac UK website.
Barely noticeable beginnings
Since I was diagnosed aged 25, I have spent quite a while reflecting on when my symptoms first started and thinking about things in my childhood and teenage years. Coeliac disease has a genetic component (after I was diagnosed my mum was found to have it too, after decades of stomach troubles) but it is thought that it often presents itself only after a trigger. This trigger can be anything that puts a stress on the body such as puberty, pregnancy, a nasty virus or infection, or a traumatic event. This trigger must happen in conjunction with eating gluten (hence why there seems to be a higher prevalence in the Western world). For some people the trigger is obvious, but I can point to a few events in my life that may have set it off.
Plain chips – yum!
Certainly my symptoms got progressively worse at two points: after puberty and after a head injury aged 22 (the incident that finally triggered full blown gut problems). But as a child it’s not surprising my symptoms got missed. I was an extremely fussy eater, although I gladly ate wheat products. I remember that most food except for bland, plain food made me feel nauseous – so my diet consisted of white bread, ham, chicken, cereal, milk, chips, white rice – that sort of thing.
I also always seemed to be in trouble at the dentist, who told me to brush my teeth better, despite the fact that I was always very diligent about brushing my teeth. I now know that I had poor enamel formation, still noticeable on my two front teeth. My current dentist tells me that the white blotches visible would have been formed around age 2 or 3 – leading me to suspect that coeliac disease has been with me all my life.
At a young age I got used to being ill all the time. A cold would always last for at least a week and invariably leave me bedridden. During winter I would always get probably 2 or 3 colds which could last up to 3 weeks each. I had flu as a teenager which left me completely unable to move. I’d sometimes get swollen glands for no reason. Mouth ulcers were a common occurrence. This carried on into my teenage years, when I put it down to stress and a bad immune system. I shrugged it off.
After puberty, I developed lactose intolerance, and cereal with milk in the morning would give me stomach cramps and bloating. I didn’t know what else to eat as the only other thing I would eat would be toast with Nutella (which also contained milk… and gluten!). So I put up with it.
Through puberty and my teens I also developed anaemia and depression, which were dismissed by doctor after doctor and also by some of my friends. (Side note: if someone comes to you and tells you they think they have depression, don’t tell them “I don’t think you do” because it makes you sound like the biggest ass in the world). I was always tired and always hungry, and I did a lot of sport and extra-curricular activities. I don’t know how I made it through those years without collapsing even though I ate like a horse.
In Germany, aged 19, and 50kg.
Age 18 and 19, I started drinking alcohol, and ate a great deal more but lost weight. This mainly happened while living in Germany: where I was drinking beer, even though I didn’t like it much, and eating a great deal of gluten-heavy food.
I suppose my body got fed up with being starved for nutrients because once I started university, I started eating more and putting on weight. The ravenous hunger that I could never seem to get rid of even caused someone in my halls to tell me I “eat like a savage”. What a great guy.
Turning point
All of the symptoms I have described so far got progressively worse and carried on until aged 22, when I had a head injury which, while medically insignificant, did trigger the worst of my coeliac symptoms. I suffered post-traumatic stress for many months and after that point events in my life caused me far more physical stress than they had before. My stomach would be a churning pit of nerves and often in threatening situations I’d feel the adrenaline rushing through my arms and legs. Whether this was made worse by the coeliac disease I don’t know, it could have been a normal reaction to what I had gone through. Even after going gluten-free I still suffer from anxiety.
It took another year before I really noticed the gut problems, during which my periods completely stopped and I was “diagnosed” with PCOS. I started putting on weight but I also starting cooking more, eating more healthily than I had ever done. By this point I was certainly no longer a fussy eater! However, this healthy eating still included gluten. I commonly had a “pregnant belly”, when my stomach swelled so much I could have passed for 6 months pregnant.
Nursing a really bad coeliac belly after a friend’s hen party.
It was after a hen weekend that I knew I needed to take my gut seriously. I was still fixated on lactose, but I began to wonder about soy since I’d had a violent reaction to a couple of soy products in the past. I went to my GP and (without any blood tests) she told me it could be IBS and referred me to a dietician. The referral took about 4-5 months, during which times my symptoms were at their worst. The fatigue was so bad I could barely get out of bed some days, and I was surprised when I had a bowel movement that wasn’t diarrhoea. I was also confused, agitated, moody and depressed. There was clearly something very wrong.
When I went to see the dietician, she assumed IBS (as they do), put me on the low FODMAP diet, and told me to introduce foods one by one. That was my first experience eating gluten-free, and it still didn’t occur to me that gluten could be the problem. I had never even heard of coeliac disease.
My first gluten-free pizza was a disaster. It tasted like a stodgy, bland, biscuit. So when it came to reintroduce gluten, I rejoiced! This time I would do a base with half wheat flour/half rice flour… surely a little gluten would be better than lots of gluten? Ha! Oh Sam…
My stomach exploded outwards and I had a very violent reaction. When I told my dietician she told me I should get tested for coeliac disease since my reaction was so bad. At this point I had been gluten-free for 3-4 weeks, and no one told me I should start eating gluten again for a while before getting tested.
At this point I was in denial… surely it couldn’t be that bad? Aren’t my symptoms relatively benign? I had convinced myself after years of doctors shutting me down that it was all in my head, or my own fault somehow.
When the doctor wouldn’t give me the all clear over the phone, I knew the worst was true. That night I stubbornly ate a giant naan bread, knowing that it would likely be my last and felt truly awful.
I didn’t see my usual doctor when I came in for the results, and I had to tell him why I was there and what they were testing for. He said these exact words to me “You have coeliac disease”. I asked, “What now?”. He gave me a look that said “Don’t be so stupid” and basically said “Just stop eating gluten”.
So I did. And it didn’t take long before I felt a million times better.
The next day I moved house (and therefore doctor’s surgery). I had researched coeliac disease, come across Coeliac UK, and had a vague sense that there should be further tests done, but at this point I was still relying on doctors to know what they were talking about. My blood tests for iron, calcium came back ok, but I was rather deficient in vitamin D. I asked about bone scans and biopsies. I was told they weren’t necessary, but they could do a blood test in a few months on the gluten-free diet, compare the results and diagnose me from that. I was confused. As far as I was concerned I had already been diagnosed, hadn’t I?
A few months later I had my follow up blood test and the doctor (yes another different one) told me that my blood was now normal, but my files had finally been sent through and my original blood tests actually only indicated a “borderline” coeliac response! I was furious – furious at all the doctors who had let me down, lied to me and prolonged my suffering with their incompetence. The doctor now strongly recommended I eat gluten for 6 weeks and get a biopsy. I declined, but agreed to be referred to a gastroenterologist.
When I finally got my appointment, I explained how 6 weeks of eating gluten would be an absolute write-off for me – I would be ill the whole time and it would severely impact my health. The CONSULTANT DOCTOR suggested I only eat gluten for 2 weeks prior to biopsy. I thought “They must know what they’re talking about!” and agreed, skipping merrily away in the knowledge that I would only have to bear it for 2 weeks.
That evening I got a phone call from the person who conducts the biopsies. She told me how she was puzzled as to why I had been put down for only 2 weeks of gluten and said in no uncertain terms this was not long enough. I begged and pleaded with her but she told me she had done many biopsies and 2 weeks simply isn’t long enough to be certain of damage to the gut. I cried down the phone. It had become much too much and everyone I saw was telling me something different. She sympathised. I believe she was the first person in all of this who actually understood coeliac disease and what a toll it can take on someone. I told her how I didn’t WANT to eat gluten ever again, and she told me that at the end of the day, it was my decision.
I cancelled the biopsy and haven’t eaten gluten since.
Age 27, and much healthier, enjoying gluten-free breadsticks at Risotteria in New York
So that is the awfully long-winded story of how I DIDN’T get officially diagnosed with coeliac disease, but it became crystal clear to me that coeliac disease is what I have. I now get about one cold a year, and I can usually work through it. Mouth ulcers are uncommon, but pop up immediately after an accidental glutening. Ditto for diarrhoea. My teeth are in great condition, apart from the blotchy enamel. My lactose intolerance has virtually disappeared. But the depression and anxiety linger on.
The permanent damage has been the erosion of my trust in doctors and a dangerous insistence on self-diagnosis. I think it was made worse by the fact that it wasn’t just one doctor who got things wrong, it was at least 6 or 7 different doctors who contributed to a long and difficult diagnosis. Don’t get me wrong, I still believe in science. But I know how overworked doctors are, and how reluctant they are to look past the most obvious scenario (stress, IBS, etc).
Blogging and the community I have met online have been crucial to my adjustment to a gluten-free life. I was reluctant to tell my story as I still have the tendency to dismiss my former symptoms as if they were nothing much, and put on a happy face. But after writing everything down for the very first time, I see what a shadow it has cast over my youth, and often wonder what I would have accomplished if I had been diagnosed earlier.
If you are concerned you have coeliac disease, or identify with any of the symptoms I have mentioned, follow these steps:
1. KEEP EATING GLUTEN (equivalent to 4 slices of bread a day for at least 6 weeks)
2. Ask your Doctor to do a blood test for coeliac disease.
3. If the results come back positive or borderline, KEEP EATING GLUTEN.
4. If you have a positive blood test but negative biopsy, you may still have coeliac disease. Ask if they can diagnose you by comparing your blood tests after 6 months of eating gluten-free.
5. Once you are diagnosed, STOP EATING GLUTEN! 🙂
Wow, your story is so intense. A lot of things remind me of my own Celiac journey. I’m now almost a year GF and I still try to complete the puzzle of when it all started for me.
At first I thought it was around my 19th birthday, but reading letters I shared with a high school friend as a teen (being around 14/15), it shows me that I complain about being tired already. It hit me and it hit me hard reading it. I did know I was always tired, but I always assumed Celiac started when I had my first and major panic attack (By that time I already was depressed), but I now believe that It started when I was just a kid. A mix between my parents divorce and hitting puberty. It’s unable to really complete the puzzle and it’s useless. But for me it explains a lot why I was always so different.
I think that every celiac patient has a different story, but I also believe that 9 out of those 10 stories involve a failing doctor. Which is actually the worse of all.
Brilliant tale. Shame about how long it took to work it out. Personally I have never looked back since being diagnosed in 1978 at Great Ormond Street Hospital (after spending weeks being tested for anaemia, diabetes, leukaemia and all sorts of other stuff). This was a result of my constantly sickly childhood becoming the concern of our excellent family GP. Back then it so unknown (the quoted incidence rate was 1 in 6500 people, it’s now thought to affect between 1 in 1,750 and 1 in 105 people) I was constantly explaining it (badly probably) to people I met. All GF food came on prescription (Oh I could tell some tales…) but on the upside it did encourage me to find out all about the food I ate, focus on the basic fresh stuff and mostly importantly, cook!
Love your story and blogs.
Thank you very much!
Hi your story sounds remarkably similar to mine, the overwhelming hunger, upset stomach and ‘pregnant’ tummy a sure sign now of an accidental glutening. I also have the blotches on my front teeth. 🙂 Brave post thanks
Thanks for commenting! Good to know that it’s not just me with my funny teeth. Maybe one day I’ll be able to get them whitened. 😉
Oh wow your story is exactly like mine I haven’t been officially diagnosed yet but I after going gluten free for a month and reading more about the disease I am now 95% sure. I’ll be seeing a gastroenterologist next week so hopefully I will finally get a diagnosis. Thanks for sharing it was really helpful
Oh and I also have blotches on my teeth x
Interesting story. I had a similar experience, with symptoms very similar to yours for many years.
My road to diagnosis started with a borderline positive TTG antibody test, followed by a negative biopsy. The doctor decided that all was well. I then on my own initiative started eating gluten free for a few months and insisted on another blood test, which was reasonably well into the negative range. The new doctor thought this was curious and referred me to a specialist (kudos to her :-)). I started eating gluten again, stuck with it for about eight weeks (including two episodes of projectile vomiting in the beginning). New blood test. Now the antibodies were off the charts. The results just said ‘> 120’, since the value 120 was the largest value this particular test could quantify. A new biopsy showed ‘partial villous atrophy’.
As someone with a scientific background, and although I’m ‘happy’ to have received the definitive confirmation of the positive biopsy, I question using that as a gold standard, given how large the surface of the small intestine is, and how sensitive the procedure appears to be to the skills of the person making the biopsy.
Also, as was evident in my case, the level of antibodies can apparently be down regulated quite a lot after long term gluten exposure, making a diagnosis without a gluten challenge more difficult. You’d think that the medical community would be aware of this.
Alas, problems mood wise persist for me too, but hopefully one day they too will be resolved.
My son’s diagnosis came by a stroke of luck.. his regular doctor was on holidays and so when I was yet again at the doctor’s because I couldn’t send my teenager to school because of his severe stomach cramps and I was ready to demand medication to treat giardia – after all what else could it be, the doctor listened and asked and sent us off for blood test which included a test for coeliac disease.
AHHH .. the last 13 years all made sense including the arrogant paediatrician who told me there was nothing wrong with my son (aged 3). And one of the interesting things is that when you take a toddler to the doctors for on-going gastro, they suggest to give them a dry cracker or toast…
I do believe that the specialist and doctors in the past were diagnosing me… as as an overprotective mum rather than a mum who was trying to get to the bottom of my son’s problems.
Maybe the new generation of doctors are more aware of Coeliac Disease…
You look so healthy now and are so positive. Well done.
Joanne
http://glutenfreeandtheaustralianteenager.wordpress.com
We seem to have a real problem of mothers (and it’s always mothers) being dismissed as “neurotic” or “overprotective” when their children display gastro problems. Good on you for finally getting that diagnosis for your son. I think the new generation of doctors are extremely aware of coeliac disease because it’s becoming obvious that it’s not as “rare” as they once thought. If you get a doctor approaching retirement age, they will have been trained to believe that coeliac is as rare as 1 in 1000, or even 1 in 10,000.
And yes, isn’t it ironic that they give those with gastro problems dry toast! I would have thought plain white rice might be a better option…
Thanks for stopping by and commenting 🙂
Hi there, just reading this and I know it’s an old post but my 13 year old daughter has just had her gastro consultant appointment after her blood test with our GP was positive for CD. We were ill advised by our GP to come off gluten for a week to try it after her blood test, this obviously made my daughter feel better but when we reintroduced gluten she felt dreadful and because her weight is so low it didn’t seem worth the risk of making her ill for a biopsy. The gastroenterologist consultant has just said today that he recommends her having gluten as it’s only 6-8 weeks she will feel sick for. We have decided not to do this and will have to live without the official diagnosis. The blood tests show coeliac as does her symptoms which have been alleviated since going GF. My daughter may change her mind in later years if a diagnosis becomes important to her but right now the thought of feeling so dreadful for 6-8 weeks is not something she can or should contemplate. Puberty is hard enough. Thanks so much for this blog. It has helped.
Hi there, sorry for the delayed reply (I was off having a baby!) It’s so easy for them to say “just eat gluten for 6-8 weeks” but the reality for someone with coeliac disease is that it’s so often not worth it. At the time, I just couldn’t afford to be ill for that time period and miss out on earnings. You’re right, puberty is hard enough. I wish you all the best for the future (and fingers crossed for the magical new test they are working on which allows them to diagnose after 3 days) xxx
your story is VERY similiar to mine
It’s amazing how often the same themes crop up when coeliacs get together and talk, isn’t it? Hope you are doing better now you know what’s wrong!
But how do u cope with that wonder…now that everything is clearer…
I know theres still plenty of time when you’ve been diagnosed in your twenties, to accomplish lots of things but its just greatly upsetting to realise that so much suffering could have been avoided and you could have acheived so much more or better things…im sorry. I don’t mean to bring the mood down, im just quite upset right now. Its not that i was even just diagnosed, its been a few years now but i probably havn’t been as strict as i should have been so far and after researching more, i guess i didn’t realise how much it has affected me until now. And i don’t think many people umderstand or realise how people are affected, even many doctors. Which can make it even harder to live with.
I know the feeling of regret and anger at having years of potential productivity taken away from you. I look back to my teens and early twenties and think about what I could have accomplished, but there’s really no point dwelling. I think of all the good things in my life that wouldn’t have happened instead, had I been diagnosed earlier. Rather than focussing on people who let you down (cough*doctors*cough), why not think of now as your chance to start fresh?
Yea i know…and i am,im already planning, i really havn’t done too bad for myself but its more what i fell into rather than what i chose.
To be honest i was strict with the diet in the beginning, i lost about a stone and i obviously felt great “normal” but i’ll have to admit that this past 6 months i have been using food as a comfort, ive become slack with it and i guess now im realising that all the effects are taking their toll again and that this comfort is infact harming me, i know i have to go back to being strict about it again but i don’t think im dealing with that fact to well right at this moment and my mind is just focused on food and things i cant have. Ha i know this can sound so trivial, but eating is something we have to do so it can be a hard thing to have to learn to control. I know im just gona have to give myself some time n get back into the swing of things, i know its not that hard once im used to it again and it will be more than worth it. Think im just having a little panic time at the moment and taking in all this info and realisation at this specific time has intensified everything.
Its just the issue if possible cognitive decline that is getting me the most out of all possible things. I have been reading up on cognitive behavioural therapy, basically how every behaviour is learned way of thinking and you can essentially rewire the brain to think more effectively. I am planning to study again, this time to actually study hard and do well in a subject of choice to prove i can. But i worry that i may have to work on other simple skills first that i shouldnt even have to consider at this stage, e.g. concentration. Something that could have been a learned behaviour through 21 years of education but maybe something was fogging my mind.
One behaviour that clearly hasnt escaped me is dwelling. You are totally right, i need to stop. It is entirely futile. Thats a really great point to focus on the good things in life that i can know wouldn’t have happened instead of what might have happened.
Thank you for creating this page and for telling your story. For being someone who is there for someone else, for being here for me. This has really helped. Cheers
There are a lot of mental side effects from eating gluten, so it’s possible that this panic is coming from being slack with the diet. I still find it very difficult to concentrate sometimes, and I am super strict with my gf diet. But you have to focus on what you can have – if you have a craving for something, look online and see if you can find a mix (for me, it was doughnuts!) or a recipe to make your own. Don’t deny yourself the things you love – just find a way to make them gluten free.
I was pretty devastated after my diagnosis, and still have my grumpy moments. The only reason I called this blog “The Happy Coeliac” was not because I WAS happy, but because it would force me to at least accept my fate. You can’t write a blog called The Happy Coeliac and then go on about how miserable it all is. So that was my method.
Hope you get the help you need. Be strong, stay away from the gluten!! 🙂
Hi thanks for your story really helped. I have just been diagnosised as a coeliac today. I’m 22 and I have grown up having outrageous pains and never suspecting anything. I have been having cramping and locking of my joints since I was 5 years old. Always putting it down to frowning pains (which I now know don’t exist) all my joints crack when I move. I get indigestion to every food. I’m worn out even when I sleep well. I’m irritable to silly things. Iv headaches everyday. My nutritionist told me I have every possible symptoms of a coeliac most people have 2-3 where I have every one of them. It’s mad to think after years of putting up with the pains and all the problems it was never picked up. Thanks for sharing your stories it’s a comfort to know I’m not alone 🙂
Hi there, you must be feeling quite alone if you were just diagnosed when you wrote your comment. The coeliac community online is so welcoming, I really encourage you to get involved 🙂 Just think though, all that pain will start to get better from now on!
I am so happy for you. I dream of having a diagnosis. Long story short, I have had symptoms for years with no diagnosis – weight loss no matter how much I eat (and I eat a lot of junk!), hair loss (all over, not just on my head -I don’t know how there is anything left), GI upset, etc… The list goes on and on. My doctor says I am classic celiac, but I’ve had the blood test and biopsies done several times, every time negative. I did the gluten free diet for about 2 months but it didn’t help me to put on a pound and my dry hair kept shedding like crazy. I just wonder if somehow I could still have celiac even though my blood tests and biopsies come back negative. Do you happen to know the answer? Anyway, thanks for sharing your story. Wishing you continued good health. Cheers!
Have you had your thyroid checked? I have Hashimotos autoimmune disease, which results in the immune system attacking the thyroid gland, and causing an inflamed thyroid with low function, but can fluctuate at times and go through periods of hyper-function. Anyway, it is common for people with this disease to be also allergic,or intolerant to gluten. I tend to be on the thin side, even though I eat a lot, although it is mainly very healthy food, but steer clear of common wheat products, and I have more or less substituted alternative flours,like quinoa, teff, etc. I enjoy Spelt, but suspect that I would be better off not eating it, even though I tolerant it better. After reading these stories, it just makes me so angry at the incompetence of many doctors out there. Why the connection between diet and sickness so often gets overlooked, forcing many people to suffer needlessly. You really have to be your own advocate, and stay very informed.
I have actually, all seems to be normal but I am very aware as my cousin has a thyroid issue (there’s no talking about getting tested for coeliac with her though – she’s too stubborn).
You are totally right at having to be your own advocate and I really think that doctors ought to be better informed about autoimmune disease in general. I am very motivated and interested but not everyone has the time, so I try to do my bit to communicate what I’ve learned. I hope my story manages to help people in some way.
Thanks for stopping by and commenting! 🙂
Your post has inspired me to make an appointment with my GP and be tested. I am familiar with several symptoms (including the “random” seeming blotchy enamel and poor enamel formation), and after further reading, I realize that I have two separate diagnoses heavily related to Coeliac’s Disease. Kind of hoping I don’t have it though, as I quite enjoy my glutinous foods, though the health improvements of a diagnosis would obviously be beneficial 🙂
Wow, good luck – hope it goes well. Gluten-free living isn’t so hard once you get used to it, as long as you can find good replacements for bread and pizza. The health improvements really outweigh the really wanting certain foods. And as you told me once “what’s with the nordic countries and their autoimmune diseases?” 🙂
Indeed. Repeatedly knocking up your cousins will probably do that to a gene pool 🙂
What you do in your spare time is nothing to do with me…. 😛
Thankyou so much. I have gone thru years of painful mouth ulcers, stomach cramps, headaches, anxiety n now depression. I have seen different doctors, spent thousand on tests n scans. My blood test came back negative for Coeliac but my niece had the same but biopsy was positive!. I have been put on anti-depressents n told to come back in 1 mth. I am trying to eat gluten free n don’t want their pills. Mouth ulcers are slowly feeling better. I’m so frustrated n sick of feeling like crap.
Hope you feel better soon! It’s really tough being ill for so long but you’ll get there!
Thank you for this. I have a biopsy coming up in three weeks after a doctor’s suggestion I may have coeliac disease, I was going to go gluten free beforehand just to try and alleviate my symptoms, I now know I need to keep eating the dreaded stuff for fear of an incorrect diagnosis. Thank you and I hope you are well 🙂
Wow, good luck with your biopsy! You’d think they would have told you to keep eating gluten, since it’s an essential part of the diagnosis process…
Hope it all goes well for you. Thanks for stopping by and commenting 🙂
I enjoyed your post – probably because like you I have not been formally diagnosed. I’m not completely convinced I am a coeliac – probably more intolerant. But either way I do have a strict gluten free diet. When I do eat gluten accidently I have horrible headaches, uncontrollable diarrhea (sometimes I do not make it to the toilet it comes on so quickly), swollen legs, and extreme tiredness. Sometimes I also bleed. I’m sure I’ve had the intolerance for years – as a teenager I suffered from horrible headaches, (I even pooed my pants a couple of times in high school), and had the feeling of always being hungry. I can remember so many times eating additional sandwiches between lunch and dinner as I just couldn’t wait. I was (and still am) very overweight so I think my parents and doctors put so many symptoms down to my weight.
At 18 I went to a nutritionist who suggested food allergies – most notably gluten and peppermint. I started a wheat free diet, but didn’t understand the difference between this and gluten free. So whilst I cut out the obvious things like bread, I was still eating gluten in sauces etc. But I did start to feel better. When I went to university I started understanding foods better, and in the last 8 or so years the internet has fully educated me on what gluten is. Whist at uni I was also diagnosed with a thyroid problem. There is a link between thyroid and gluten sensitivity (both auto immune disease) so this made me more aware of what was going on with my body.
I have been fully gluten free for about 6 or 7 years now. The last 4 or 5 have been brilliant in producing gluten free alternative foods, so now I don’t miss anything. I personally don’t have any desire for a formal diagnosis as I don’t see what I would learn that I don’t already know, but everyone should do what’s best for them.
Oh Sam, what an awful time you had! It makes me realise how lucky I am that my daughter was diagnosed so early (after a year of me pushing and pushing the doctors who told me she had toddler diarhoea). I am still not convinced that I am not coeliac. I had a negative blood test and then a negative biopsy but looking back I am not sure that I had been eating enough gluten when I had the biopsy and I have just found out that I am very likely sIGA deficient which means the standard blood test for coeliac doesn’t work. I know I can’t eat wheat anyway…whether all gluten is a problem I don’t know! But I don’t eat gluten anyway and there are lots of other things that my tummy reacts to too which is really boring!! Well done for writing down your story…it was very brave of you. I hope your anxiety gets better at some point x
My name is Breanna Schwarting and I just recently turned 19 years old. Overall, I have been a healthy person my whole life until my senior year of high school at Smithtown High School West. After I ate food, I would get these terribly, unbearable pains. These pains controlled me. A few times, these pains were so extremely excruciating that my mom took me to a walk-in clinic. Wherever I was, I had to stop what I was doing immediately and run to a bathroom. If there wasn’t a bathroom around, I would suffer as these pains would stop and return almost in different waves. It wasn’t an acid-reflux pain or a stomach pain; it was a lower abdominal pain where the intestines are; and believe me, I thought my intestines were about to explode right out of me. I would pop tums all the time and take gas-x but nothing would stop these pains. The only relief I had was after I spent about 3 hours in a bathroom. These episodes drained my energy. My mom took me to a gastro doctor numerous times. The doctor assumed I had Irritable Bowl Syndrome (IBS) and acid reflux. I was instructed to take a prilosec called omeprazole. After months of taking this medicine 2 times a day, my pains never stopped. I was scared every time I would eat, especially if I was out in public. I tried to keep a food journal where I wrote down the food I ate before i got the pains. I still could not pin point which food was triggering these pains. I began to feel hopeless. I wondered if I had Crohn’s disease or some serious rare disease that would just take my life one day. I felt like I was just an unhealthy blob with no energy. At 18 years old, nobody should feel like that. Long story short, the pains seemed to get worse as time passed.I vividly remember my trip to fire island that was ruined by the greedy pains. I felt nauseous and exhausted all day; I couldn’t keep my eyes open. That night, I vomited numerous times. Finally, enough was enough. It was time to get to the bottom of this because I could not stand to live like that anymore. A few days after, I returned to my gastro doctor where my mom demanded that they order me a colonoscopy and endoscopy test. After I got these horrible exams, the doctors told me that my intestines were extremely inflamed and bleeding when they biopsied a piece.I was confused as to what would cause this. Was I dying? Would I have to get pieces of my intestine out? By now I suspected I had Crohn’s disease. When I got the results of these exams and other blood tests, it was clear that I had Celiac Disease. Its funny because months before these tests, I had blood work done and the results showed that I was border-line Celiac. My doctor said the lab values were too low to be considered Celiac and that they don’t look into it further unless the numbers are higher. Once I found out for sure, I wasn’t even upset or mad. I was relieved because I finally knew what I had and I was going to be okay. I remember thinking to myself, “It’s okay I just won’t eat bread, everything is fine.” Little did I know, gluten/wheat is in basically everything.Sometimes it can be depressing watching people bite into a slice of normal regular pizza but I can manage; gluten-free pizza is good depending on which brand it is. After a year of having Celiac disease, I have finally adjusted to the diet. Now I pretty much know what I can eat and where I can eat when it comes to restaurants. It is hard sometimes and I am limited at certain places but overall, there are a lot of tasty alternatives to gluten that allows people like me to live a normal, healthy life. I take vitamins everyday and maintain this diet and I have been feeling much better. The only problem is sometimes I am sensitive to dairy products and I have been trying to fight off infections and strengthen my immune system for a year now. Another issue is cross-contamination in restaurants and untrained staff. For example, I have recently ordered take out from Gino’s of Nesconset. On the phone I specifically ordered gluten-free eggplant parm and gluten-free spaghetti and I clarified that I have celiac disease and the food must be prepared in a safe manner. When I got home and opened the bag of food, there was a piece of bread that looked like normal bread. I called the restaurant before I ate it to double check and a girl on the phone said it is a regular piece of bread like I thought. This is unacceptable. I was then worried that maybe the entire meal was not gluten-free. I asked to speak to a manager and the girl said no manager was present and that she can assure me the whole meal is gluten-free. Furthermore, about 2 weeks after this event, I went to Gino’s to sit down and order the same meal. When I asked for gluten-free spaghetti with my gluten-free eggplant, the waitress told me they do not have any kind of gluten-free pasta and never did. I was confused and told her to ask her manager. Long story short, the pasta I consumed that day was regular wheat pasta. I explained this story to the manager and though he apologized, he did nothing about this. If a restaurant offers gluten-free food, they must train their staff on how to prepare/serve it and what Celiac Disease is. It is a huge deal. If someone with Celiac eats wheat; it destroys the villi in their small intestine which makes it difficult for the body to absorb its necessary nutrients. It inflames the intestines and can lead to cancer and extremely serious health concerns. Gluten-free is not just a diet by choice, it is a way of life for people with an autoimmune disease like myself. Something needs to be done to protect others who go to this unprofessional restaurant. In addition, I hope my story helped some of you understand what it is like to have Celiac and the severity of this disease. Once Celiac is diagnosed, it is possible to bounce back and return back to a normal healthy state.
Hi,
I’m so glad I came across this because I can relate so much to your story. In November I started noticing that my ‘toilet habits’ started to change and then after two weeks of noticing lost 5 pounds despite not changing my diet and remaining the same weight for so long. The doctor suggested I keep a food diary and after a while and some very horrible experiments with food, it seemed that gluten and dairy were the culprits. I decided to cut back and began feeling better but I still had diarrhoea, mild stomach aches and the weight continued to drop. My stomach got better after going gluten and dairy free but the weight continue to drop. I am currently at my lightest of 54kg. I have recently been the hospital where they told me to go back on a normal diet for 6 weeks which at that point I will have an endoscopy and colonoscopy. I have also had blood tests (I was tested for CD via blood before but came back neg, I hoping this time it will be positive so that I have some answers) and will have an ultrasound done.
I’ve gone back on gluten but feel pretty rubbish but I feel it will get worse as I’ve only been back on gluten for 5 days. I now also experience nausea and slight fatigue which I never really felt before.
After hearing about your trauma being a catalyst for CD I began thinking and think this may also be the same for me. Two years ago my university friend and housemate died of an asthma attack while we were at a party. It was incredibly traumatising but since then I have been to the doctors more times (not just about stomach related issuses) more times than I have in my entire life. I hate making fuss and would rarely go to the doctor so to go was a big deal for me. Maybe this is why I have potentially developed CD? I hope I get some answers soon.
Thank you for sharing your story. I now feel like there are others out there who I can relate to.
xx
Hi Hannah, thanks for stopping by and commenting. I hope you find your answers. It must have been very traumatising going through what you did. Just remember no matter what the tests say, your pain and symptoms are valid. Take care xxx
Thanks for your story. I’ve been recently diagnosed as “borderline celiac” after some blood work. I’m also not absorbing vitamin D. I’ve been eating gluten free for 3 weeks now and still feel horrible (no relief whatsoever).
For the past 13 or so years, I’ve had severe stomach and intestinal pain, stomach and intestinal surgery, auto-immune and skin issues, and chronic muscle and joint pain. I’m completely clueless on what to do. How long does it take to feel relief? The only thing I was told by the doctor was that I had a “15 level” for the Endomysial Abs IgA blood test.
I wouldn’t like to say how long it takes – I felt better almost immediately (within a week) but a lot of people take up to 6 months to feel better.
Hi there
I’m a thirty year old male and this article may be life changing. I’ve had mysterious stomach troubles along with fatigue, headaches, depression and feeling years older than I am. After reading these stories I feel I may have found the issue. Each of them ,especially the main article, almost spells out the way I have felt for years. Will get the appropriate tests then post back.
Good luck with it!
I recently adopted a GF diet. Had gone to my doc with stomach aches, bloating, gas, constipation and having lost 10 lbs over the past year even though I seem to have been eating more and more. She prescribed tranquilizers. So I decided to see how I felt if I stopped eating gluten. Stomach problems disappeared! I did my own inadvertent ‘gluten challenge’ when I was travelling overseas (after having been GF for two weeks). Beer, fish n chips, pastry, bread over the space of two days – very sick! Another slip up a few weeks later when I ate one breaded scampi. Bloating and diarrea next morning. When I looked back over the past few years, it made me wonder if I had earlier signs of gluten sensitivity – 4 years ago exhausted, dizzy all the time and lost 20 lbs in about 4 months, though I had not changed my diet. Looking back, recall that the doc recommended a psychiatrist. I have pretty well given up on my doctor. If I can fix the problem myself, why wouldn’t I? Yes, I agree the best thing would be to get tested but if I wait for my doctor to help me, it could take years. P.S. Three months into GF diet and I have stopped losing weight and have gained three pounds. Never thought I would be happy to say that I have gained weight!
Hi, I’ve been ill with my stomach for many years (my whole life really) it started when I was 20 I am now 23. I have had cameras everywhere and blood tests and everything comes back negative. I had a coeliac blood test done but wasn’t told I needed to be on a gluten diet for weeks. I’m sitting here after a crap day not be able to go to work again. You’re post made me feel so much better I know you probably won’t see this, and I kind of hope you don’t which means you are better!. I am now going to start a gluten diet and get another test! xx
Good luck with on your journey to improved health! Stick with it – it will be worth it 🙂
Don’t know if you still update this, but I have a question. How can I tell if I’m just gluten intolerant or am coeliac? Does it matter? Is it possible that I am coeliac, but that there are varying degrees of coeliac? Would it be best for me to avoid cross-contamination even if it doesn’t make me sick? Or is it possible that avoiding cross-contamination could CAUSE me to become coeliac? Sort of like when you avoid all germs and it makes you more susceptible to getting bacterial infections. It’s all very confusing. All I know is that when I eat pasta, flour tortillas, cake, or other things made with flour, I end up vomiting. It doesn’t stay in my stomach long enough to cause me to have intestinal issues. If I try NOT to throw up, I end up having miserable stomach cramps, and finally end up vomiting anyway. I’m also lactose intolerant, and the same thing happens when I eat ice-cream, cheesecake, or drink milk shakes. Any help you can give would be very helpful.