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Biopsy results normal - I'm devastated
PoorlyPixie posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
This is my second thread within a few days, sorry it is long! My biopsy results came today, exactly 6 weeks after the endoscopy. They were "reported as normal." And I am honestly devastated. I've been crying all day. I needed those samples to come back positive, because I cannot - no, I will not - go on like this anymore. Some background: I had panic attacks in 2011 that eventually had me hospitalised with a heart rate of 170. After leaving the hospital I noticed I had constant indigestion and light headedness, symptoms that they assured me were due to the heart rate. When things calmed down, they said it was the beta blockers. After coming off the beta blockers, I started questioning my doctors why I had indigestion, acid reflux; why I was now light headed in the cinema, squinting and holding my head from the loud noise; why I was now sensitive to the sun, to light, to heat; and why I had symptoms of IBS. To cut a long story short, I've been getting treatment for IBS and especially the reflux since 2012, with absolutely no success. I've had every test and I now have a hiatal hernia and acid/bile in the esophagus constantly. I've also had muscle pain and severe weakness, and joint pain. After writing my doctor a letter last May, he suggested testing for celiac, as all my symptoms fit and my father had actually been found celiac positive in his last blood test, but my dad had no idea about that until very recently. I've had three blood tests - all negative. I've had a biopsy - negative. And I've been eating copious amount of bread and wheat for many months, and have never felt worse. The doctors tell me that the reflux will just stop on its own one day. I don't think that ever happens. I mentioned that my father had been diagnosed with M.E/Chronic fatigue syndrome in 2000, and that for a long time we've wondered if I might have inherited it. They didn't really say anything to that. I know it's not good to have celiac disease, but it has treatment, and it has hope. There are worse things to be diagnosed with, crohns, even M.E. There is no treatment for those. I don't want to have fundoplication surgery for the reflux and hernia, because it sounds awful and scary. The gastroenterologist didn't even think the surgery was necessary when I last spoke to her. But I really cannot go on with it, I refuse, so without a diagnosis of celiac, what's left for me to do? Just fundoplication. I was prepared to replace my food, was planning it. I've been researching for months. I even managed to delude myself into believing I have celiac. When my dad got a letter a couple of weeks ago about his last blood test being "strongly suggestive of coeliac disease," I hoped even harder. I thought it was a sign! I feel so foolish. Now I'll have to wait to see the gastroenterologist again to talk about... What? Fundoplication? She didn't even want to do it. She just shrugged and smiled and said I was a difficult patient. I'm going to see my dad's doctor this week, if I can, to talk about how likely it is that I might have celiac after all, regardless of my results, because of my dad's positive blood test, and to discuss the possibility I might have M.E/Chronic fatigue syndrome. In all honesty, I was prepared to look into M.E, until my dad's letter. Then I was even more certain my problem was gluten. Now they tell me, I have no problem with gluten. I feel SO ill right now, I can only describe it as "malaise." My head is light yet heavy, with pressure. My eyes are begging to close. My gut has been painful for over a week. I can feel acid reflux as always. My nails are cracked and peeling, as always. There is blood in my stools. My muscles are painful and so weak that I couldn't stretch out my arm while holding a mug without my arm feeling weak and wobbly. My legs were wobbling as I walked on Saturday. My gums feel as if there could be an ulcer. And I have acne, pale/yellow skin tone, and a headache is threatening. I just can't go on. Really thinking about giving up. I will try to go gluten free anyway, but my mum doesn't believe gluten is my problem and has been sceptical the whole time, so she is reluctant to learn about cross contamination in the kitchen. She just says it's not the problem and it's something else. I don't want to have NCGS because I don't think my doctors/gastroenterologists believe it exists. Thank you for any help :(. -
Didn't get better...finally an answer
thleensd posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
Looks like I haven't been on here for about 4 years...hoping the next chapter in my story will help someone along the way. I was diagnosed with celiac disease by biopsy in 2009 after a number of years of trouble. I carefully nixed gluten, then went paleo, then went on the Wahls Protocol - each with some improvement, but never enough to return to "normal". I was diagnosed with Chronic Fatigue Syndrome/ME and stopped looking for answers (other than continued reading, refinement and dietary adjustments). I was starting to do pretty well - traveled internationally, was starting to hike regularly when I became increasingly fatigued, dizzy, light-headed again...but mostly only in the morning. Symptoms crept later and later in the day until finally over the summer I really crashed. I felt like I was going to faint every time I stood up for more than a few minutes - it was scary, but familiar to pre-Celiac-diagnosis. Interestingly enough, early on, most of my symptoms were neurological: ataxia, brain fog, memory problems, nerve pain, etc as well as debilitating fatigue. I had a few near-fainting experiences here and there, but it was attributed to malnourishment, low blood pressure, CFS, and yes..."anxiety". I found a new functional medicine doctor who led me down another research path...thyroid...no...adrenal fatigue... maybe, but no clinical markers. Then I found it - thanks to the internet (which I also attribute to finding celiac disease). In addition to Celiac Disease, I have POTS. Postural Orthostatic Tachycardia Syndrome, a form of dysautonomia. In essence, for some reason (autoimmunity? low blood volume? general dysautonomia?) not enough blood pumps to our vital organs, so our hearts race to try to compensate when we stand up (sometimes when we sit up). Those are the main features, but, much like Celiac Disease, there are lists and lists of additional signs and symptoms. I found an expert (such as there are, there is no cure, only treatments - and it was only a named syndrome starting in 1993, so it's a young syndrome) and finally got an appointment last week. Now to start the long road of pharmaceuticals (ugh), lifestyle interventions, and anything else we can find so I can feel better. Here are the most troubling symptoms I went through that my doctors dismissed as "just CFS" or "Celiac complications": Dizziness, lightheadedness, light and sound sensitivity, fatigue, cognitive dysfunction (brain fog) digestive disturbances, too much adrenaline (and not at appropriate times), and of course, an inappropriately high heart rate upon standing. I also had related issues (which are explained by the related diagnoses of Ehlers-Danlos Syndrome (hypermobile) and MCAD/MCAS (mast cell activation disorder/syndrome). Those included: joint and nerve pain, loose joints, chemical sensitivity, a history of chronic idiopathic urticaria (hives) and angioedema (swelling). Turns out that POTS has it's own little constellation cluster of illnesses that like to coexist with it: celiac disease, lupus, MS, sjogrens, EDS, Lyme Disease are some of the most common) It turns out that Celiac Disease can trigger POTS! If you're having unexplained orthostatic intolerance in spite of not much change in blood pressure upon standing, check your heart rate. None of my doctors ever thought to check my standing heart rate, and the only irregularities were attributed to anxiety. Dysautonomia isn't fun. But, having a diagnosis can hopefully lead to some treatment options. Here's a great short video about POTS. -
Other Diseases you have been diagnosed with before your Celiac Diagnosis
Posterboy posted a topic in Related Disorders & Celiac Research
To All those who have had other disease diagnosis's before your Celiac Diagnsosis, Someone more experienced on this board might set up a poll to see how many of the tags in the thread apply to those who have received either a celiac disease or NCGS diagnosis for those who read this board. See this new research as posted on Celiac.com today http://www.celiac.com/articles/24448/1/Gluten-Definitely-Triggers-Symptoms-in-Some-NCGS-Patients/Page1.html?utm_source=phplist1864&utm_medium=email&utm_content=HTML&utm_campaign=Celiac.com+Update%3A+Can+Some+Celiac+Disease+Be+Treated+with+More+than+Just+a+GFD%3F A survey how many diseases other than Celiac disease were you diagnosed with before you received your Celiac Diagnosis? Or what other disease(s) do you also have as a result of either not being diagnosed with Celiac disease sooner or that are occurring with (Co-Morbid) with your Celiac diagnosis: A Survey/Discussion of how Co-Morbidity i.e., Pellagra might explain some of the GI problems you might be experiencing with/as a Celiac patient. I know of at least one other person on this board who has shown symptom improvement when using Niacin (best taken in the Niacinamide form) a harder to find flush free form that is often used in skin creams to treat dermatitis issues that might be confused for D.H. among Celiac sufferer’s. I was wondering if others’ have used it (Niacin in the Niacinamide form) for symptom relief for their GI problems. I find among my friends who try it they experience much better control from contamination issues once the Vitamin induces/causes them to burp. Has anyone else experienced similar results? Am I alone? Or would you be willing to try Niacinamide to see if it might cause burping and improve CC issues for you too the way it has me. If so please join the discussion and comment. Posterboy,