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Found 10 results

  1. Hi all, I’m new to this group. I’ve been gluten free for a year now with celiac. I’m very careful at home, but find I get diarrhea every time I eat out. Recently we moved and I’ve been having a severe flare up. I’m experiencing what I think is brain fog, dizziness, vertigo, to the point that it’s affecting my everyday functioning-similar to when I’ve forgotten to take my medication for a few days. I’ve been on generic Zoloft for years without issue, but I recently read that a reader found that a flare up prevented the absorption of medication. Has anyone ever heard of this? Am I just experiencing brain fog?? Any suggestions are welcomed. Thanks in advance. Nicole
  2. I have been gluten free since Feb 2012. Many of my symptoms have subsided, but there are some alarming ones that have maintained and persisted. To the extent I had gone back to the dr. b/c I believed them to be something separate from the celiac disease. Now I'm not sure. The dr.s have no clue and I believe they are ready to send me for a psych consult. The neurologist alluded to a conversion disorder...psychosomatic etc.....I know that is not it. My celiac dr had put me on the Fasano diet, b/c I am so sensitive to gluten, and the 3 accidental exposures I have had have laid me out for 5 weeks at a time. I have been doing better since the Fasano diet, but these things have stood out glaringly. I have persisting dizziness and lightheadedness. Fatigue is severe. I wake up fine, and do as much as I can before I am a waste case for the rest of the day. That is between 6-9 am... and then I am exhausted for the rest of the day. If I rest, I can get a little energy back and it is gone quickly I feel like a cell phone that can't hold a charge. I have episodes when I am walking, I start to slow down, balance is off...weakness takes over, I can barely walk, or hold a conversation. My face goes grey, my eyes are sunken. I need assistance getting into a chair. It takes a few hours before this passes. I feel like I am trapped in my body. Sometimes this comes with a sensation of a shivering or fluttering sensation in my brain. It is very concerning. However, the neurologist has never heard of this before. (thankfuly my celiac doc told me yesterday that he has had patients with the same fluttering....No other dr!) When these episodes pass, they leave me exhausted for hours to days. Please can someone advise if they have had some of the same symptoms? My ANA is high, 640 My ttg is around 29. I live in 100% gluten free house. Including all of my beauty products.
  3. I’m the parent of a nearly 15 year old daughter. 5 years ago we finally found something that made a difference in her pain. A natural doctor did a blood test showing her to be severely gluten intolerant. Regretfully, we did not know to test her for celiac before removing gluten from her diet. Without that diagnosis, many doctors have made us feel gluten intolerance isn’t that serious. Very long story. Anyway, after 5 years of strict gluten avoidance, we were on vacation and let our guard down. Served what we thought was rice, she ate a portion. It ended up being ORZO. Pasta that looks like rice. That night she was dizzy, faint, even developed a fever. She slept most of the next day not eating much at all thinking she was coming down with a cold. Then, severe stomach pain and headache. Then, she threw up everything she ate for a few days. Ready to take her to the ER, we realized it was gluten! Picked up some digestive enzymes, anti-nausea medications, ginger, peppermint, tea, you name it. Today was the first day she could eat proper in a week. Still having some discomfort. Joint pain starting now too. My main question is: Is this typical for just gluten intolerance or does it sound more like celiac? She has been severely vitamin d deficient taking as much as 10,000 iu a day in liquid D and never bringing her levels to normal and menstral cycle never regular although she started at 10. Goes for months without and then when it does come, crazy heavy lasting weeks. Doctor still wasn’t horribly concerned. Just exhausted trying to be our own doctor. Insurance constantly changing making us look for new doctors. I wish I was rich. So expensive and frustrating having to try to get enough bedside time with each new doctor to reexplain her whole journey. Any information appreciated. She was doing much better by strictly avoiding gluten all these years but this last episode has me researching again to do what I can. Again, what do you think? My gut says “Celiac” but I guess we might not ever know for sure.
  4. 2001- suddenly and without warning developed hay fever 2002 - went to the doctors complaining of constant diarrhoea 2003- diagnosed with carpal tunnel syndrom after getting numb hands and arms and persistent pins and needles along with shooting pains which felt like hot pokers were being inserted in my body. 2006- starting to get easily fatigued and tired, often fall asleep when coming home, sometimes while lying on the floor playing with my daughter 2010-went to doctors with consistent pain in lower right side of rib cage, so bad at times that I couldn't sleep on my right side. Scan revealed no alcoholic fatty liver disease and raised alt 2011- starting to get major headaches and neck ache at the base of my skull 2012-memory starting to get bad 2013-memory still deteriorating and starting to get bouts of confusion, gave up clay pigeon shooting as I had a confusion attack while shooting and felt that for people's safety I needed to stop. Starting to get ringing in ears. 2014- confusion attacks and memory getting so bad that I felt I was developing dementia at 44! Started recording in my phone details of symptoms and problems. Ringing in left ear constant but occasionally progresses to right ear as well. Occasionally getting dizzy spells with the confusion. 2015-heard about lymes disease on the radio and the symptoms seemed to click (also knew I had been bitten by a tick in the past) decided to get checked out-my doctor actually laughed at me and said you can't have lymes disease! Blood test taken and not lymes but symptoms carried on....went and seen another doctor (this time a trainee) she decided to check my folate and B12 levels. Bingo! Low folate of 4.1 minimum should be 4.7. Put on folic acid and went on healthy eating binge with lots of fresh meat and green leafy vegetables. Amazing improvement....felt better and folate level went up to 20 in 4 weeks, also gave the doctor a copy of my multi vitamins I was taking for 7-8 months prior to blood test-containing the recommend daily dose of B12 and folic acid (so how could my folate be so low?) told to stop folic acid, eat normally and come back in 4 weeks, folate level dropped to 7 in space of 4 weeks, feeling crappy again. Told to take folic acid for a year but keep eating leafy greens (I now eat more spinach than Popeye!) refused referral to memory specialist and gastroenterologist. Dizzy spells getting worse. Gland in right side of neck under ear always swollen when I'm feeling really bad. 2 more doctors visits refused memory specialist/neurologist and a gastroenterologist again and again. Told I have IBS and that's it. however- memory still pants, and carpal tunnel and numbness headaches etc still happening, liver pain intermittent, starting to get spasms in my arms and legs sometimes like a bug is crawling under my skin. Kept going to doctors as feeling down and lacking any excitement for life in general, told I am depressed and need anti depressants. These gave me the worst headaches of my life and stopped them after a week without any improvement in my mood I might add. Doctors again in December of 2015- this time doctor tests me for Coeliac disease, eeerrrr ok ?! Had the blood test and went gluten free until I got the results. WOW what a difference!! No aches or pains anywhere for like the first time in 14-15 years, headaches cleared after 2 weeks, no carpal tunnel, diarrhoea stopped too. Sleeping better, and no confusion although my memory didn't improve. blood test results- one of the two was inconclusive 2nd said non-coeliac ??????????? Puzzled but as I was feeling better I carried on with the gluten free diet and I had some Peronni grand reserva lagers on New Year's Eve, bad idea! In bed within 2 hours, bloated, headaches feeling like I have flu. Next day-major dizzy spells and god awful ringing in both ears. Took 3 days to feel better. Still on gluten free diet as I was feeling so much better. mid January 2016- accidentally had gluten in the form of barley in a 10gm sachet of brown sauce on a breakfast of tomatoes, bacon, eggs and mushrooms. Two hours later headache, diarrhoea, feeling sick as hell, home to bed. Next day couldn't even stand up dizzy spells were so bad as was the ringing in my ears. Decided to see a gastroenterologist privately. Spent 3 days in bed with what I would describe as severe flu but no cough or runny nose. tested for coeliac disease again, but doctor seemed to ask me more pertinent questions, concerned about my liver and 13 years of diarrhoea. Books me in for an endoscopy and colonoscopy straight away (on the nhs as he is private and nhs) runs some bloods, iga comes back as 3.7-normal, elevated liver enzymes, elevated ige. Writes letter to my gp saying I might need an mri depending on results of biopsies. Suggests to my gp in his letter that I might be seronegative. Go to my gp, told him I am in for a biopsies and he says make sure you are eating gluten, still wants me to go on anti depressants and says I'm unlikely to be coeliac due to my iga results (in a period of 5 weeks when I accidentally ate gluten twice two weeks apart). 17-03-16 still waiting for biopsies, but remembered something after reading the posts on here.... I often get insanely itchy blisters on my ears, full of lager coloured fluid(usually I pop them to make them scab and disappear quicker) I also remember getting similar ones but not so fluid filled on a couple of my fingers, so itchy that I would take a nail clipper and pop them to get some relief. Last few weeks of being back on gluten I have been getting the odd very itchy red spot on my forearms.. So decided to go to the doctors again with this new information as it looks like dermatitis herpetiformis .....result? No! Told I am severely depressed and need anti depressants, and promptly gives me a sick note signing me of work for two weeks with depression and wheat intolerance?!?!?!? I'm self employed and own my own business with people working for me!!! So what the hell was the point in the sick note? i honestly think I'm going crazy, certainly my gp thinks I am! but would like to hear feedback on whether people think I'm mad or whether I'm coeliac or gluten intolerant. And whether my symptoms sound consistent with other people's. thanks justin
  5. Has anyone diagnosed with Celiac Disease and on a gluten-free diet have symptoms of peripheral neuropathy and/or vertigo just by being glutened once or a few times? I think I was glutened by accident 5 days ago (after eating had the hallmark left-side cramp that I get when glutened). That same day I was so extremely tired I was in bed for most of the day. The next day when I opened my eyes, I suffered violent vertigo and vomiting. Since then, I have vertigo when lying down in bed or when changing head position, tingling in hands and legs/feet, mild headache, dizziness when walking (I look like I'm drunk when walking), nausea, and the mild headache. The vertigo and dizziness is driving me insane. I went to E.R. yesterday, they did a CAT Scan of my head and couldn't find anything wrong that would be an emergency (such as a stroke). Is it normal to have such a bad neurological reaction just by one glutened incident? I've never had a reaction like this.
  6. I am working on going gluten-free. I have no formal diagnosis yet (I may not even pursue it) but I had no major issues today but around noon I had a cup of coffee (which I have every morning) but this time mom added Watkins Original Double Strength Vanilla Extract to our Half & Half for our coffee. We've done that before, but I've been now 2 full days (attempting to be completely gluten-free) without gluten. I was glutened (I think) yesterday at lunchtime when I made gritz from a brand new, unopened can. They were not certified gluten-free and do not say gluten-free on the label. So it was my fault. Diarrhea, nausea, heart burn from the grits. But today not long after drinking my coffee (I am not a sipper, I drink it like I do water) I got up from laying down and noticed I was very dizzy and my head feels very airy, like my skull is inflated with helium. I'm hating this! ACK! Could this dizziness and helium-head feelings come from gluten? I've not had this feeling from food before. But then again I've never gone gluten-free before either. There was only a Tablespoon of extract for all three of our coffees, which equates to 1 Tsp per coffee, which really isn't a whole lot considering the alcohol in it. Soo I'm not sure what's going on. I've eaten a protein shake for breakfast which was gluten-free. scrambled eggs for lunch and then a chicken breast for snack (leftovers) then had coffee with the cream and vanilla extract in it. This head thing only happened after the coffee. My stevia is gluten-free that I use only in coffee. Our coffee has not changed, nor cream, nor vanilla, nor stevia. I don't seem to have any really significant intestinal or stomach problems right now. I am still getting sharp stabbing (though light feeling) pains in my intestines since after the chicken today. I put Sargento shredded cheddar cheese on it. I know I am having issues with cheese right now but never had that cause this weird head feeling and dizziness. Any thoughts?
  7. I have been trying to put all the pieces together since my diagnosis 1.5 yrs ago. I have been having lingering neuro symptoms that no one can figure out. I have been checked for seizures, all other autoimmunes etc...and of course, my file at the hospital needs it's own zip code. I know there is something else wrong....could it still be the damage from the celiac? Of course, but in my gut (no pun intended) I believe it is more. I have been logging lately, and it came to me this morning. OMG, could it be RICE? I am extremely sensitive to gluten exposure. I react insanely to gluten-free oats. The celiac doc put me on the Fasano diet. I did well, and there was some improvement with sleeping through the night. Neuro symptoms were still present, and to me, seemed worse. My brain would have a fluttering sensation at times, extreme dizziness/ lightheadedness, weakness to name a few symptoms (bone pain, back pain, arm pain etc) odd episodes where I could barely walk or speak from weakness. My psoriasis has been very angry lately What did I rely heavily on during the Fasano? RICE. The week I was away at the cottage, what did I eat for almost 2 meals a day? RICE. That was probably my worst week. The past few days, the dizziness has returned...I had chicken coated in a heavy brown rice flour mix, and made banana bread from a rice flour blend (which I generally don't eat). However, I cannot really find a link with rice and neuro issues. So maybe I am just grasping at straws here. But it seems to be a big coincidence. Also, when I was extremely ill before my dx, I could barely eat or keep food in. My neuro symptoms were off the charts then. I lived on rice cakes......sometimes twice a day....
  8. I am new to all of this. i have been a vegan since 68 and my blood counts are always good with the exception of low vit. d which I supplement. I now have found out that I have Celiac disease. I have been sticking to a strict gluten-free diet for about 3 weeks now and am dizzy, weak and nauseous. I saw a dietician today and was hoping to get a menu but didn't. When i look on line for a vegan, gluten-free menu plan that doesn't require lots of prep time and expense (I am disabled and on a budget, aren't we all? ) it seems as if you have to either pay for the menus by joining a club or they are recipes that take lots of ingredients. Does anyone know of an easier way that I could go about this? IE How to convert my recipes, and where can i find a decent loaf of bread or a bread recipe that is vegan and gluten-free? Thanks and God bless!
  9. If anyone could help or advise I would be eternally grateful, access to information is extremely limited in the UK and from what I am increasingly discovering doctors from GP’s to specialists are pretty clueless. I originally posted my symptoms on here three months ago. Background, I was slowly recovering from the diagnosis of Coeliac Disease in March, I’d just enjoyed a fantastic weekend with my girlfriend when I was randomly hit by a huge bout of anxiety that took me off my feet. Never had a history of anxiety, had no reason to be hit by it. Symptoms that have followed include: Anxiety that is worse in the mornings, fade in the afternoon and die off after 6pm – dizziness, confusion, displacement – acid feelings in my legs, jelly arms, intercostal pain in ribs and numb limbs. It’s like ground hog day every day and this has been my life for the last 12 weeks. I have had every test imaginable Vitamins, brain scan etc and the only resulting factor is cortisol levels are too high – I have been tested for Cushings and that doesn’t appear to be conclusive. The doctors have advised taking anti anxiety meds to curb the problem but I refuse to take them as I know its not the root of the problem. I dose out on Kalms (over the counter herbal remedy) each day just to take the edge of the feelings. I am aware there are links between Coeliac and anxiety, I would be interested if anyone has experienced the same symptoms and recovered? I have taken the following to date which has had little to no success: Vitamins B, C, D – other complex vits like Berroca. I have just started taking Magnesium but a little too early to say whether this has worked or not. Any help or advice would be really appreciated. Many thanks Chris
  10. I was diagnosed with Coeliac three months ago, as well as having the usual symptoms the most alarming is face numbing, a feeling of pressure in my head, dizziness and jelly legs, I wonder if anyone else has experienced this ?– I think this must be when Gluten gets into my system by accident. Over this bank holiday weekend my girlfriend and I ate out quite alot. All my meals were gluten free, but perhaps the chips were cooked in oil that had also cooked battered fish – the McDonalds was scrambled eggs, bacon and hash browns, then to top this off I had the ‘gluten free pizza’ at Pizza Hut. On Tuesday I woke with my head all over the place, I misjudged putting the kettle back on the holder, then driving to work my condition worsened to the point I diverted to hospital and went to A&E, I honestly felt I was having a stroke, perhaps some of it was an anxiety attack? After examination the doctor released me but suggested I should get tested for MS. Yesterday I saw my GP and he has referred me for a scan. Today I was with my girlfriend and my symptoms returned again I was so concerned I went back to A&E – again I was released but told not to drive until the scan had been completed. I’m just wondering if I am on my own with this, or has anyone else experienced this and how did they get over it? Many thanks in advance..