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- trents replied to Suzi374's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms2Lots of tests
Was a biopsy done when you had your gastroscopy? Concerning your anemia, are you B12 deficient? It's nearly impossible to get sufficient B12 if you are a vegetarian unless you take supplements. -
- Suzi374 replied to Suzi374's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms2Lots of tests
And I’m anaemic, however I’m also female and vegetarian. I had an iron trans a couple of years ago however it’s starting to dwindle and taking supplements doesn’t seem to work. I can’t seem to absorb it. -
- Suzi374 posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms2
Lots of tests
Hi, I attended a neurologist appt last Tuesday, which I nearly cancelled, due to ongoing numbness and tingling in toes to mid foot. One of the first things he asked was ‘are you celiac’. I’m not. He thought all reflexes were ok but at the last minute decided on nerve conduction tests which were low normal. He was a little confused as he felt they should be be... -
- Peace lily posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms0Would like to gain weight
Im still not gaining weight I’m on a gluten free diet . And still having issues with constapation started priobiocs figured it would help been over two weeks . I guess it’s going to be a long road for me . -
- Smith-Ronald replied to Soleihey's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms1Lymph nodes
Enlarged lymph nodes in neck and groin with celiac are not uncommon. They can take time to reduce even after going gluten-free. Monitoring is key.
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And I’m anaemic, however I’m also female and vegetarian. I had an iron trans a couple of years ago however it’s starting to dwindle and taking supplements doesn’t seem to work. I can’t seem to absorb it. -
Hi, I attended a neurologist appt last Tuesday, which I nearly cancelled, due to ongoing numbness and tingling in toes to mid foot. One of the first things he asked was ‘are you celiac’. I’m not. He thought all reflexes were ok but at the last minute decided on nerve conduction tests which were low normal. He was a little confused as he felt they should be better and tried a new set of probs, all the time, giving me multiple shocks which were not enjoyable lol. Anyway, he’s now ordered tests for myeloma, and all the vitaminy things that so many of you mention on here, also tests looking for autoimmune responses. I already have Hashimotos. Interestingly, to me, but maybe someone out there can relate or knows more than i do, although I was a nurse, but ED not ‘weird symptoms’ nurse. Anyway back to the interesting thing, I took duramine in 2013 to lose weight which caused a massive panic attack when I stopped taking it and half my hair fell out. I only took it for a week but it was horrible and I regret it. It triggered ongoing panic attacks which are horrendous. So I feel like I’m a bit crazy. Then in 2020 I had this sudden onset of horrible pain when trying to eat a cinnamon roll. It continued and I lost around 20 kgs. I had two gastroscopes and a colonoscopy and they were all normal. I scored a barium swallow and CT angiogram. All normal. The pain subsided a little but I was left with reflux and an awful feeling that I couldn’t get air when I ate some foods. This was not anxiety. The anxiety was separate and I still maintain this. This was something to do with eating. It was like the air was thick but I wasn’t short of breath. I just had the sensation I was, then it triggered anxiety. Anyway, I had other weird things- couldn’t bend knees to shave legs in shower lol. Knees felt stiff and swollen but they weren’t. Knee WOUld swell up randomly but mri showed minimal issues. A bit of a meniscus degeneration but insignificant. Then the buzzing sensations in my head, the feeling like someone was stabbing me with something sharp. So now, I pre empted his tests, although I don’t think I’m celiac because it should have come up on gastroscopy, I’ve gone off gluten. Since Tuesday last week so 9 days. Since then I don’t appear to be as constipated, I realised I got through today without a nap and I’m not tired, maybe it’s just today and not related but I get very tired normally and sleep straight after work often, I can bend my knees and shave my legs lol, the buzzing vibrating has gone from my head, I had to call and ambulance as my heart decided we were off on a run, but we weren’t running and I’ve been a bit twitchy at bed time when trying to sleep, reflux is improving, I did get the weird suffocating feeling a bit when eating today but not as bad normall. Tingling and numbness still present and I felt like it moved up my legs a bit today but I’m a bit jittery. So I don’t know if it’s celiac disease or a gluten intolerance but I think, and it may be wishful thinking because my symptoms do make life a bit challenging, but maybe I’m feeling better. I don’t feel as cloudy. My thinking feels crisper. Like there’s no buzzing and I’m not fighting to break through the cloudiness now. I hope so much that this may help me feel a bit better moving forward. It would be a miracle as I really have struggled to work and parent and keep the house clean and I’m always anxious and exhausted. If you get this far, please tell me if you you can relate to any of the above. Oh and tonsils out 5 years ago but before that antibiotics multiple times a year, sometimes intramuscular because they were so bad. Op was meant to take 30 mins, it took 1.5 hours due to size of them.
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By Peace lily · Posted
Im still not gaining weight I’m on a gluten free diet . And still having issues with constapation started priobiocs figured it would help been over two weeks . I guess it’s going to be a long road for me . -
By Smith-Ronald · Posted
Enlarged lymph nodes in neck and groin with celiac are not uncommon. They can take time to reduce even after going gluten-free. Monitoring is key. -
By Random.user556 · Posted
Hello! I’m sorry in advance for the long post! Over the past few months I’ve been having a lot of issues with my stomach and have recently been referred to a Gastroenterologist. I’ve had stomach pain and issues since I was a baby. I had bad constipation (still do) and couldn’t tolerate most formula as a baby. When I was around 8 I started experiencing a lot of lower abdominal cramping (just below the belly button) and ended up missing a fair amount of school because of this. It would start about 2 hours after eating breakfast and I’d have lower abdominal cramps and feel nauseous . After a visit to my family doctor it was brushed off as separation anxiety.. or as the doctor put it “I was just a kid who wanted to stay home from school”. This stomach pain persisted all through my elementary and high school years. In fact I still experience it to this day and I’m now 24. Along with this my doctor believes I have a form of disautonomia called POTS (Postural Orthostatic Tachycardia Syndrome). I frequently feel unwell and exhausted. I also experience Raynaud’s phenomena especially during the winter months or when I’m sick. I also can not tolerate heat for the life of me.. although I’m not entirely convinced my symptoms are from POTS. The last few years I’ve also started experiencing frequent chronic sinus infections up to 5 a year most of which I require antibiotics for… Up until two years ago I have never had allergies or sinus problems. Back to my stomach issues… The last year I have been experiencing lots of stomach bloating and discomfort especially at night.. this has led to a few nights of 3am vomiting.. my doctor tested me for H. Pylori which was negative as well as full work ups to test my kidneys, liver, pancreas, gallbladder.. all of which were normal. At this time he also started me on Rabeprazole 20mg twice daily which is a Proton pump inhibitor (PPI) … as he believes it could be GERD. The PPI has not helped at all and I have since been moved down to once daily which I wait for a referral to a Gastroenterologist for an endoscopy as well as an abdominal ultrasound to verify I have no gallstones.. The pain I feel in my abdomen feels very heavy right around my bellybutton and frequently is accompanied by nausea and occasionally I also experience sharp stabbing like pain left of my belly button. I began tracking my symptoms, what I’m eating and bowel habits on an app called “My IBS” which track’s symptoms and flags foods that could be potential triggers.. all of my flagged potential triggers seem to be gluten related foods like pasta and breads. I asked to be tested for Celiac as I have an uncle with it. My doctor only sent for TtG IGA.. no other tests. My results came back negative at “<0.5 U/ml” the reference range being “ <12 U/Ml”. I am aware that total IGA should of been ordered as well but my doctor is confident we have ruled out celiac so I guess I will have to wait for the Gastroenterologist for more testing.. The other red flag for me is I have a rash that shows on both my knees and recently I have developed a similar rash behind both of my ears, on my neck and into my scalp.. there is dozens of small red and skin coloured lesions that sort of? resemble pimples but have a “head” and don’t pop (yes, i know don’t pop your pimples!) they are also itchy and sore.. I have tried washing and scrubbing them with antibacterial soap and body wash to no avail as well as ensuring I rinse my neck thoroughly after a shower, keeping my neck dry, frequently changing pillowcases and even keeping my hair off my neck as much as possible … it doesn’t have any effect on it. In your experience does this sound like I could be experiencing celiac? I’ve debated going gluten free to see if my symptoms persist or begin to clear up.. any suggestions or help is appreciated!
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