Can You Guess the Most Common Misdiagnoses for Celiac Disease?

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On 5/22/2015 at 10:53 AM, Guest Lisa said:

I remember having stomach issues as far back as age 6. Through the years I've seen doctors for multiple stomach complaints as well as other issues such as thyroid and infertility. I've been told I had spastic colon, IBS, anorexia and that I was just stressed out. Not until I was 50 did I finally get a diagnosis of celiac disease.

I am so sorry to read. As a child, I was called ‘hollow legs’, in my teens, problems with my periods, migraines, then like you, Lisa, aged 21, I was diagnosed with an eating disorder, my bloating and pain ignored, put on antidepressants and sent to a psychiatrist. Trips to the ED with severe abdominal pain, checked for pregnancy. I had the you are just depressed, it’s seasonal affective disorder, it’s a viral infection, just stress, fibromyalgia, functional neurological disorder. Aged 47, I became extremely unwell with neurological complications. I had severe vertigo, hand tremors, eye tremors, I could not coordinate my body, I had a jerky, wide based walk (called ataxia) and I could not control my bladder. Finally coeliac disease and I was deficient in everything. 

I am 46 years old and have always had digestive problems, migraines, hormonal issues, acne, low platelets, joint pain, unexplained allergic reactions that would cause hives and vomiting. My oral health has suffered a well. I had no enamel whatsoever on my permanent teeth. My food literally did not digest. In a noodle then out a noodle, so weird.  I was told IBS, anorexia, lactose intolerance, stomach virus, stomach infection, so many times without any relief from any meds or diet doctors put me on. When I was 17 years old I had an endoscope done with biopsy. But still received a bogus diagnosis and was told I had parasites and but was never treated for them. Shortly after that another doctor ruled out IBS and just instructed me to not eat any bread. I never was given an explanation as to why I couldn’t eat bread. So naturally I was still consuming gluten. My grandmother told me that she thought I had what she had which was celiac. I still did not understand what that was. I had several miscarriages as an adult And later I gave birth to a babygirl in 2004. I had preterm labor at 5,6,7, & 8 months in which they let me have her, my water broke so what else was gonna happen. I had to take hormones and steroids to sustain my pregnancy with her. My daughter was very tiny at 5lbs 6oz and only 17 inches long. She continued to stay tiny, was always throwing up, had diarrhea, all the way up to the age of 2 1/2 years old when she was diagnosed with Celiac and has been gluten free ever since. Just this past year jI was instructed by my primary to get off gluten entirely if I wanted my health to improve. So I have gone gluten free except for some accidental consumption which I’ve paid for with a lot of pain. Here recently, another doctor has diagnosed me with IBS and told me to eat gluten free, dairy free, and avoid some sugars. So what am I supposed to eat? In the last year my health has deteriorated pretty fast.  Had a colonoscopy last month and they removed a 15 cm polyp, had a ct scan a few days ago, and tomorrow I’m getting another endoscope. Anyways, I feel like doctors don’t want to be bothered and they just tag you IBS. Like right after my colonoscopy when they told me about the polyp they told me I have IBS. You can’t see IBS with a colonoscopy. So I asked about that and I was told “oh it’s because of your symptoms “. So here I am, 46 years old and it’s still a mystery. All of my teeth are loose and broken, and worn down. It’s very frustrating to get diagnosed with all these guessed ailments and not receive any treatment so I can be healthy. For so long, I just would tell myself that my issues and pain were normal and that everyone experiences what I do. I’ve even told myself that it’s all in my head and I am fine. Oh and I was diagnosed with raynauds last year which is an auto immune. With being malnourished for 46 years because I can’t get a correct diagnosis is scary to me. A kid I went to grade school with come to find out had celiac but was misdiagnosed as a type 1 diabetic. He died in his 20’s because of his misdiagnosis and I’m sure their is so many others like him. I am glad I did not choose the medical field to have the responsibility of someone else’s life in my hands but why do doctors avoid a celiac diagnosis? I was told they avoid a celiac diagnosis because they can’t make money off of it. Is this true? Do they misdiagnose people just so they can make bank at the expense of their patients helath by putting off a diagnosis with unnecessary testing for everything but celiacs?

1 hour ago, Guest DMc said:

 So what am I supposed to eat? 

Focus on fresh meat, eggs, fruit and vegetables and cooking your own meals. Go easy on the fruit because it usually high in fructose but don't avoid fruit entirely since it is loaded with nutrition. Avoid processed foods and eating out. There is still a lot you can eat. Potatoes and rice and beans can provide the carbs you need. You can still eat many grains, just not wheat, barley and rye. You can have corn. Experiment with alternative grains like quinoa, sorghum and buckwheat. 

Sounds like you also need to get some high potency vitamins and minerals on board to counteract the inherent nutritional deficiencies that long term unattended celiac disease causes. Celiac disease damages the villi that line the small bowel where all our nutrition is absorbed. Sublinqual B12, B-complex, thiamine, D3, Magnesium glycinate. Make sure they are all labeled gluten free as wheat starch is sometimes used as fillers in pills and supplements. Check all your meds for hidden wheat/gluten. 

For the most part, doctors don't look for celiac disease because of the profound ignorance in the medical community regarding gluten-related disorders. Many of them are operating off of outdated statistics concerning the incidence of celiac disease in the population. They were told it's about 1 in 5000 whereas more recent statistics show that it is greater than 1 in 1000. They are also very unaware that celiac disease symptoms range far beyond things limited to the GI system. They are stuck on that old outdated model of symptomology that confines itself to GI distress. 

It took for me to find out I was celiac when my iron levels got down to 3, after many infusions and blood tests   Fainting twice after severe gut pain I was sent to a haematologist who sent me for very many tests and discovered that I had coeliac and possibly born with it  I have grown up with depression, constipation, breathlessness and malabsorption of all vitamins  and a bad cough  I had a hysterectomy when I was 27 ( now I wonder if it was at all necessary) My feet used swell and so sore on my souls it hurt to walk  We are a lot of gluten in our young lives no wonder we had all these health issues  

Welcome to the forum Lynne,

I had this one too.  Used to crawl to the bathroom because I couldn't wait to acclimate to standing.

2 hours ago, Lynne Hateley-James said:

so sore on my souls it hurt to walk