Celiac Disease - Undiagnosed for Years
77My Chronic Health Problems Started with Burnout
For nearly two decades, I suffered from chronic health issues - clinical depression, chronic pain in my soft tissues and bones, chronic fatigue and eventually a thyroid disorder.
I got burnt out at university - I started feeling extremely anxious and became exhausted and depressed. About this time migraines started and I had frequent respiratory infections. My skin bruised easily. Since getting burnout, I could no longer think clearly - my mind was a fog. I was prone to soft tissue strain injuries and I had irritable bowel. I couldn't handle any kind of stress.
Pregnancy was very difficult for me. I was very unwell and I had an obstructed kidney.
After childbirth, the pain in my body became chronic - my muscles, joints, bones and skin hurt constantly. My gums and teeth hurt which made brushing my teeth unpleasant and going to the dentist torture. Every morning I coughed up phlegm as I had chronic post-nasal drip. I suffered from frequent sinus infections.
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My face and body were puffy, like permanent fluid retention. Cleaning my teeth was torturous, as my gums and teeth were hypersensitive.
My doctor misdiagnosed me with fibromyalgia, ignoring that my blood test indicated raised inflammation markers. Like other doctors I had seen over the years, my doctor was convinced that my symptoms were all in my head. I saw a psychiatrist on several occasions. I was prescribed various medications that failed to help, and even made me worse. Finally, I was branded with ‘Treatment Resistant Depression’.
Before and After Gluten Free
Investigating Diet
I started looking at diet and managed to link my son’s high-pitched screaming episodes to preservatives. Amazed that I found the trigger for his screaming, I started investigating natural food chemicals also. We did an elimination diet identify how food chemicals affected us.
I noticed that when I ate bread, my joints became swollen and tender. I had read that one needs to be eating gluten when having a test. I requested a blood test, and the results came back normal. I was delighted I was cleared to keep eating gluten, as bread was one of my favourite foods, even though it frequently painfully lodged in my food pipe.
Conveniently at this time, a golf-ball sized lump presented in my neck. I was very weak and would collapse after climbing a few steps. I sweated profusely on a hot day, and froze in air-conditioning. I felt so ill that I wondered if I had cancer. Maybe I was dying? Why else would I feel so awful? For several years now, I had suffered from night sweats and now I was sweating all day too.
The lump was investigated and found to be two large thyroid cysts. The thyroid blood test was normal, except for the presence of antibodies against my thyroid - indications of thyroid autoimmune disease. My blood pressure was dropping more than 10 units when I went from sitting to standing, which is why I was collapsing. I had a test for Addison’s disease, but the test came back normal.
Gluten Grains
Gluten Free Diet
I was still observing diet reactions carefully. I ate two pieces of toast for breakfast, and straight afterward felt unwell. My tummy hurt and became more swollen – like 5 months pregnant. The pain in my bones and joints increased several notches and I felt faint and sick. I ate nothing but boiled rice for the rest of the day. After about 12 hours, the bone pain eased significantly, along with the nausea, tummy pain and brain fog.
The next day, I ate two crackers. I started sweating and felt dizzy. Then the bone pain, nausea, low blood pressure and tummy cramps kicked in. I even had a panic attack. Approximately 9 hours later, the symptoms eased significantly. It had to be gluten!
Because I had been eating gluten continuously, I never recognised it as being a problem. I started a gluten-free diet immediately. I wasn’t too impressed with gluten free bread - it had a denser texture than bread made from wheat flour.
Within days of gluten-free, the brain fog that had plagued me for 15 years left, and I could think clearly. Five years of chronic pain left: no more bone pain, sensitive gums and teeth.
Over the next weeks and months I noticed that I had no PMS, no more easy bruising and no more sinus infections. 12 kg of weight fell off and I was back to my former size.
After admiring my newly flat tummy, I decided to treat myself to a gluten-free brownie. The assistant went to select the brownie from the cabinet with tongs covered in cake grime. I requested fresh tongs. He put the brownie in a bag and I took a bite. Then I realised that the brownie had pale crumbs on it. Were they gluten crumbs? Had I eaten any? I took the brownie back and the assistant fetched a fresh slice out of the supplier’s cake box in the fridge. It had no pale crumbs. I felt annoyed that suppliers had gone to the trouble of making gluten free goods, only to have them contaminated by poor handling.
Within 10 minutes my belly started expanding like a balloon. I was doubled over with painful tummy cramps and felt sick and dizzy. I found a toilet and a very unpleasant case of diarrhoea. I suffered from bloating, low blood pressure, constipation and anxiety for days. I have this reaction every time I've been accidently glutened.
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Diagnosed Celiac
I documented all my food reactions findings and saw a dietician to check my nutrition. She commended me on my effort and then read through the pages of symptoms caused by each food chemical. She suspected celiac disease (also spelled 'coeliac'). I informed her that my test came back clear.
It turned out my doctor had only tested for anti-gliadin antibodies, not a full celiac screening panel. I had antibodies against gliadin, but the results were ‘normal’.
She explained how when the gut becomes damaged, one starts to become allergic to foods and the body starts developing antibodies against its own organs such as the thyroid. Celiac disease is an autoimmune disease and left untreated can trigger other autoimmune diseases and health complications.
I refused to go back on gluten for a biopsy. I didn’t care if I had a coeliac label or not – I was certain that gluten made me sick.
I was instructed to have a gene test and if positive, my son would have the gene test too. The test revealed I had a DQ2 celiac gene but fortunately my son did not inherit a celiac gene. He is extremely unlikely to develop celiac disease, but may still develop a non-celiac gluten intolerance.
Together with my positive result for the coeliac gene and symptoms including thyroid cysts that resolved on a gluten free diet, I was diagnosed celiac without a biopsy.
The dietician encouraged me to join my local Celiac Society. She reassured me that with time on the gluten free diet, I would be able to tolerate more natural chemicals such as salicylates, a natural asprin chemical in fruit.
Further Improvements
A follow-up confirmed that antibodies against my thyroid had disappeared. This did not surprise me, as the cysts went away soon after adopting a gluten free diet, along with my hypothyroid symptoms (low blood pressure, unable to regulate body temperature, weight gain, extreme fatigue, brittle hair, excess sweating).
A blood test confirmed that I had a very strong IgG delayed allergy to dairy protein. I've always known milk makes me sick, but used to get away with eating a little cheese of yoghurt. Palm/palmolein oil give me identical symptoms to dairy, including very low blood pressure, myalgia, gut pain, swollen belly, irritable bowel. I get irritable bowel , insomnia and skin rashes from amines, a protein breakdown product in processed meats, tinned fish and fermented products. Salicylates give me depression, sore muscles and bleeding problems.
Unfortunately the commercial gluten-free dairy-free products use palm oil. Also most fried products use palm oil, often labelled as ‘vegetable oil’. Because of these restrictions, I tend to make a lot of my own food from scratch. I’ve managed to find some tasty gluten-free, dairy-free, palm-free commercial products including a bread I like.
Since being strictly gluten/dairy/palm oil free, I am tolerating more salicylates and amines. I’ve been gluten free for over two years now. I’m still experimenting with foods to try and widen my diet further. I am looking at ways to continue to heal my gut and immune system.
I still can’t believe that doctors couldn't figure out my worsening condition over so many years. I'd had dangerous pregnancy complications. Doctors offered only two ‘solutions’: medication and/or surgery. I was recommended to have my uterus and thyroid out. I refused because I was too weak for surgery and I believe surgery doesn’t address the root cause.
I’m having a second chance at life. I'm feeling a lot better. My pain disorder and depressive disorder are under control. My hair is healthy and shiny.
And my husband and child are pleased to have a healthier and happier wife and mother.
About Celiac Disease
It is estimated that 1 in 100 people have celiac disease, and most are not diagnosed. Some people do not even have symptoms, but are picked up when a close relative is diagnosed. I believe my celiac symptoms started in my teens, and the burnout I experienced when I was twenty was a sign that my immune system was disrupted.
There is currently no cure for celiac disease. It is controlled by avoiding all gluten in the diet. Gluten is a protein in wheat, rye, barley, oats and their by-products and it can be present in a surprisingly large variety of foods.
Some people may have a wheat allergy but are fine with other gluten-grains.
The diet is not easy, especially with my other allergies and intolerances, but I have gotten used to it. For someone that only requires gluten-free, there is number of new products are being launched all the time. Many chefs are aware of how to alter a meal to make it gluten-free.
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Thanks for your feedback. I feel like I missed out on years of my life, along with income etc. Apparently the average wait before diagnosis after onset of symptoms is around 12 years, and that's after seeing numerous doctors. Maybe doctors need re-educating? I read about a doctor that didn't even figure it out in himself (they are taught a narrow group of symptoms and children only)
This is something I need to look into. I get sick quite often, almost everytime I eat. I am glad you are on the road to healthy living.
Thank you. I didn't ever think I would feel relatively healthy again. I wrote this piece to raise awareness. I actually figured out I was coeliac myself and doctors confirmed it. Unfortunately, the longer it is left untreated, the more damage gets done. Also, tests may come back false negative initially. Another thing to consider is food allergies & intolerances - not all food allergies are anaphylactic. I will be writing about that topic soon
I can say i have had the same trip- even following the diet because whatever you do you cant get 100 per cent! Its interesting comparing symptons though- I had forgotten the Thyroid- and during pregnancy!!!
thanks for commenting Case1Worker. Looking back now, the progression of my illness was not too unusual for someone with undiagnosed coeliac disease. I think some doctors need their heads examined - LOL. I have other food sensitivities as a result of it being left so long - I need to be careful with other foods too, otherwise I get unpleasant effects
Thanks for sharing your story. I think my daughter and I have celiac disease. Gluten definitely makes me sick. I have had a food allergy test done and no wheat allergies. I am going to have the celiac panel done, but maybe I should just have the test for the gene. I am so happy that you are feeling better and figured out what it was!
Provident - celiac is a tricky disease and can present with so many symptoms. It is not the same as wheat allergy. It is worthwhile having celiac panel done, if negative (can be negative in early stages), try a strict gluten free diet. If helps, consider gene test. The gene only tells you if predispositioned for developing celiac - approx 30% (if I recall correctly) of those with gene go on to develop celiac. Some people are non-celiac gluten intolerant.
great comprehensive hub. I love reading about people solving the mysteries of their body. I am recently diagnosed with rheumatoid arthritis and want to try elimination diet. I thought I was a few months ago but turned out I didn't know some of the regular foods I was eating still had possible culprit ingredients. Where did you find a list of dairy and wheat free foods?
I think all sorts of ailments can be caused/make worse by food sensitivities. I will write some hubs with how I solved the puzzle of our food sensitivities in the near future. A good website with lots of info is www.fedup.com
I believe that I have this. Can you still eat brown rice?
yes, Amy, there are several gluten-free options including rice, corn, buckwheat, quinoa, tapioca.
It is a difficult diet, so it is important to be tested for celiac while you are still eating gluten - so that if you have celiac, you need to avoid all traces of gluten, as the gut will continue being damaged, causing health complications. If negative, it may be that there is a wheat allergy or intolerance or something similar.
its soo lovely to read your happy ending. I have had health problems my whole life. The most prominent ones to date are, no periods, chronic sinusitus, asthma and IBS. In the last 8 weeks i have been flattened with chronic fatigue and stomach discomfort, bruising, thinning hair, itchings, nausea and an extremely uncomfortable stomach. i also constantly have a slight fever. but MY BLOODS ARE CLEAR! im feeling distressed as i feel like im breaking down....i have eliminated gluten for over a week and seen no change.....from your experience could it take a while??
p.s.......im 23 yearsold!
tash, I completely understand your frustration. Did you have full celiac panel?(a lot of doctors don't do all the tests, and patients may come back false negative, and then finally test positive years down the track). Your symptoms certainly fit. Some of the symptoms you list (extreme fatigue, thinning hair) can indicate hypothryoid -my screening thyoid test that doctors usually run came back in the normal range, but I had cysts and I had antibodies attacking my thyroid (finally detected when I was sent for the cysts to be investigated). Another possibility is delayed food allergies, which I have also, which give the symptoms you describe plus more (can be to any food, medication, supplement or additive(s). If your problem is gluten, it can take a long time to clear out of the body. If avoiding gluten is making absolutely no difference, then gluten may not be the problem. Try an elimination diet to see if any dietary factors (very likely with those kinds of symptoms) and keep hassling the doctors until you get somewhere. The constant fever might be a sign of chronic inflammation, which can also be picked up with blood test for inflammation markers (ie your body is having a reaction to something)
thanks for getting back to me, your response is very helpful and means a lot. I have been referred to a gastroenterologist so hopefully i can get some answers. I am actually starting to feel slightly better, my stomach pain is not as bad and i just have slightly more energy. Im not too excited about re-introducing gluten before a biopsy if Im going to get sick again! that fills me with dread. your story does fill me with hope. Its really hard to relay to people how distressing it is to constantly feel unwell with no answers or a way of controlling it. My mum just thinks Im lazy and over reacting but it is very distressing. I have had to quit my job and move back home. I just want a diagnosis so i can move on and get better. I had the same thought last night that i still may have gluten in my system and thats why i still have some symptoms. The only other thing is that i havent had chronic weight loss, but i have been constipated for about 7 weeks!!! could this still be a symptom of celiac still?
in the last few days my bone pain has gone, my joints are still stiff but every morning i wake up as if i have a massive hangover BUT i have not had a drink for months. I also have weird pulsing in my legs and twitches in other limbs, pins and needles are frequent!!
So sorry to rabbit on, its just that most people don;t understand or have much experience with suffering in this way!! Hope its not too exhausting to read.
Totally understand where you are coming from. Yes constipation and/or diarrhoea are common symptoms. Some people lose weight; some people gain weight (from bloating?); some people have hardly any symptoms. A gluten free diet is tricky to get right at first - there is hidden gluten in so many things. Get a diagnosis ASAP. If is is still inconclusive, can get a gene test. Sounds like you are getting some gradual improvements (I was fortunate to have some dramatic improvements, followed by other improvements in next few months). If you are celiac, it can wreck havoc in your system - stuff up your immune system, make you more allergic to other foods (as in my case), cause oesteoporosis, cause anxiety and depression and thyroid disorders and much more. Obviously something major is going on.
Thank you soo much for your feedback, its been a real real help!!! fingers crossed. thanks again.
Glad it helped. Beware of useless doctors that won't help or try to tell you it's all in your head (I wrote a hub about that too). Change doctors if you have to until you get answers. Let me know what the outcome of your tests are
Baileybear - what an informative read.
I prefer holistic docs over convential anyday. They are so much more thorough.
Have you tried Ezekiel bread? Even my kids love it. Gluten free, a little pricier, but much more filling, so a serving lasts longer than the gluten breads.
Warm regards~
thanks, breathe2travel. No, I haven't tried Ezekial bread. I haven't actually found a bread that I really love (that is gluten free, dairy free, palm free)
I have recently been looking into celiac disease after a lifetime of symptoms. I’ve always been very skinny and pale my entire life with very thin and brittle hair and nails. And also very irritable and emotional (I can burst into tears at any moment and sometimes without warning!). I also was constipated the majority of my childhood. And when I would go, I would clog the toilet! (As a 35lbs little girl! No way is that normal.) I’ve always been this way so it didn’t draw much concern from the people that knew me. But I could always tell something wasn’t right, or something wasn’t working right in my body. I thought for sure I had a brain tumor because I constantly had headaches too. My family has definitely not been supportive with my celiac suspicion because I’ve been trying to figure out what wrong with me for so long that to them- this is just another thing that I’m complaining about. I’ve dealt with migraines, an endless amount of injuries due to sports, IBS, horrible gas, sinus issues, asthma, fatigue, concentration problems, all over body aches, and no tolerance for stress.
The past three years have been the hardest on me because my symptoms have become much worse. My freshman year of college I broke out horribly with acne. At the time I blamed it on the stress of moving, starting college, and competing in track at the college level. But the acne was only the first of my symptoms – I soon started getting severe cramps in my stomach that would force me to have to hunch over to try and relieve the pain. I was “diagnosed” with acid reflux and was told to take antacids. Well, the antacids helped with my heart burn and indigestion but it certainly didn’t make a difference on my new symptoms – anxiety, depression, and now heart palpitations. My whole life I’ve always been a little depressed. But it’s hard to explain – I know I’m not “depressed” but I get this overwhelming ‘sad’ feeling sometimes that definitely makes me feel depressed. But anyways, I again just blamed these symptoms on getting older. (it’s normal for an 18yr old to feel this way, right? NOT!!) I soon developed bronchitis and strep throat and had to sit out from track. (Which was fine by me because I was struggling to have the energy to complete the workouts). I was starting to black out and get severe headaches anytime I would try to work-out. I was then diagnosed with asthma and was put on beta blockers to help keep my heart beating at a normal rate while exercising.
The next year I decided that I would really try to eat better to try and help my stomach issues. After making this change I noticed no difference at all. In fact things got worse. I would eat dinner at around 7 and go to bed around midnight and I noticed that my stomach was still uncomfortably full from dinner. I would try to go to bed but I would wake up in the middle of the night with extreme heart burn/ indigestion and felt horribly nauseas and would eventually throw up. I went into the doctors yet again and got a diagnosis of a stomach ulcer. He didn’t run any tests at all and just told me to take antacids….again. I spent the rest of the year dealing with heart burn, indigestion, IBS, headaches, depression and extreme nausea. I blamed all of my symptoms on the birth control pills I had been taking to help relieve my PMS and horrible cramps I would get a week before and during my period. I decided to stop taking the pills and thought that all of my symptoms would go away- but they didn’t. During this past summer I was throwing up almost on a daily basis and was feeling weaker and more depressed by the day. I had a friend actually mention celiac to me and I even looked into it but decided that I couldn’t possibly have an issue like celiac. (my thought process was –nothing has been wrong with me so far so why would this be the answer). But my problems were still not getting better. I decided to try and avoid gluten a little and see how I felt. At first I didn’t notice much difference so I would occasionally sneak a piece of pizza or something. Big no no- instantly all my old symptoms would come back! So I was almost certain that celiac was the answer! I went in to the doctors after about a week of the diet and had the blood test ran for celiac – it came back negative. This was so discouraging to me, but I continued the diet regardless of the test and I already feel like such a different person. I have more energy than I ever have in my life, I have color in my face and I think my hair actually might be growing! I feel strong for once and I can breathe threw my nose for the first time since I can remember.
The diet has DEFIANTLY helped my headaches, heartburn/indigestion, irritability, energy level, and for the first time in my life I’m not bloated! (I didn’t know I was bloated because I was bloated all the time!!) My stomach flattened out dramatically, it was almost a little scary to see how skinny I really was without all the inflammation in my body. So now my issue is – my family. I am absolutely convinced that my dad, my two sisters and possibly even my mom have it. My dad was always a very skinny guy until about 30 then he got a big gut and I know this is a classic sign of celiac but ALL of my relatives have this figure. So now I am beginning to believe that everyone on my dad’s side of the family has it too! (all 14 of my dad’s brothers and sisters). All of my dad’s brothers and himself have had appendicitis, and most of the women have struggled with pancreatitis along with IBS and other stomach problems (like ulcers and whatever else the doctor could think of). I know that if Celiacs goes undiagnosed it can lead to a several complications so I really want to inform my family but if I don’t have a clear diagnosis I feel like they won’t take me seriously. To be honest I am scared to get tested – I don’t want to have to endure two weeks of headaches, stomach cramps, diarrhea , and severe irritability and concentration problems but if it could help my entire family it’s worth it, right?? And then there’s my fear that the biopsy will come back negative, then what do I do?!?! :( :( My older sister has recently started the diet and has NO intention of turning back because of how great she has felt on it but my concern is my dad. I am so convinced he has it but I KNOW he wont do anything about it unless there was a clear diagnosis. It just scares me because I know celiacs causes damamge and i just want him to be heatlhy!! Let me know what you guys think!
Adrienne - seems you have a lot of symptoms there and have noticed an improvement with diet. Untreated celiac leads to the development of other autoimmune diseases & allergies. I'm sensitive to many other food chemicals (but have improved dramatically since GF). If celiac, it's very important to avoid even trace gluten & no cheating.
If you think you will remain committed to the diet and feel certain after years of illness that you don't want to be sick again for weeks for a biopsy that might show nothing even if celiac, then I recommend you do what I did - get a gene test for DQ2 & DQ8. If you have the gene, with your history & improvement on the diet, adhere to a strict celiac's diet. If your gene test is negative, then you may have a gluten sensitivity but don't need to worry about trace (unless you find it makes you feel better to do so).
My family aren't interested in being tested. I think it comes from my mother's side, possibly from her father that we didn't know (he was tiny and had a short life-span). My father has always been in very good health & his parents lived to very old age. My mother has had numerous health problems & surgeries.
I am asking for a blood test tomorrow as I have suffered two decades of related symptoms including asthma, fatigue, brain fog, headaches and arthritis. I am nervous to the results. Think I would rather have a simple dairy or wheat intolerance, as I think Gluten intolerance or Celiac Disease would be a nightmare to completely eliminate gluten from your life as its in everything from make-up, to sauces and more. I also have three Mercury fillings and have read that can be linked to Leaky Gut and Arthritis. Infact both Celiac Disease and Heavy Metal Toxicity are linked to hundreds of different health conditions. I live in England the United Kingdom and Doctors here are pretty useless on the NHS and don't have the funds to go Private. I think they wouldn't offer Gene testing nor Heavy Metal testing on the NHS, any excuse to cut back on costs, yet they will happily spend a fortune on self inflicted drug addicts and alcoholics. My son also has asthma symptoms and has been given an inhalor however they say he is too young to diagnose at 3 years old going on 4. Yet I know someone else whose son got diagnosed at 5. Doctors definately treat you like hyprocondriacs and like your naive. They don't feel or understand whats going on with your body, only you yourself can feel what's wrong.
Very good hub, I voted up. I recently tested positive for a high gluten intolerance, along with corn & peanuts. My hollistic doctor said the treatment is the same for Celiac or intolerance so no need for a biopsy. He is guessing I've had it for years because I have microscopic holes in my intestinal lining. I had the GI effects stool test and it showed all kinds of things I wasn't aware of?
I'm feeling better, after suffering 20+yrs with IBS symptoms and gluten free for 2 months. I eat gluten free cereal, breads(mix, the premades are nasty),rice pasta, turkey etc, and of course a lot of fruits and veggies. Food is getting easier to come by but there are still a lot that I miss. My choices are even smaller since a lot of gluten free products substitute corn but I'm finding ways around it. If you haven't tried them, LARA BARS are tasty GF candy bars.
My daughter had a similar story. Her GI doctor didn't think she had it because he couldn't find a genetic connection. We don't have a diagnosis either.
Later, I tried the diet with her as an experiment while reading the book, Wheat Belly. My psoriasis, arthritis pain and anxiety/irritability levels all improved dramatically avoiding gluten. We might seek the genetic testing you mentioned. It might help other family members. Great Hub. Thanks for sharing your story.
moonbun 23 months ago
Horrible thing to cope with, but glad that you are doing so well now. I've linked back :)