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- trents replied to Tarp's topic in Related Issues & Disorders2Celiac related issues
Welcome to the forum @Tarp! Some more information would be helpful. What is your age? What led you to investigate celiac diagnosis 11 years ago? What were your symptoms then? Do you have osteoporosis/osteopenia? What areas of the spine have been involved with your four surgeries? As you probably know, celiac disease damages the lining... -
- trents replied to Tarp's topic in Related Issues & Disorders2
Celiac related issues
Welcome to the forum @Tarp! Some more information would be helpful. What is your age? What led you to investigate celiac diagnosis 11 years ago? What were your symptoms then? Do you have osteoporosis/osteopenia? What areas of the spine have been involved with your four surgeries? As you probably know, celiac disease damages the lining... -
- Tarp posted a topic in Related Issues & Disorders2Celiac related issues
I am at a loss with spine issues. I have had 4 spine surgeries. These were=all before my celiac diagnosis. Currently I am dealing with chest pain arm pain and burning with increased weakness in my legs. I have had bowel incontinence for 6 months. I had a nuclear stress test and heart issues were ruled out. I can not get a doctor to listen to me and diagnose... -
- TanyaB posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms0Feeling frustrated after normal biopsy
My journey started over 11 years ago. I know this because I recently went to set up an account here and discovered I had set one up 11 years ago, when I first suspected celiac. Also of note, it began in the US and continued in the UK, so I’ve experienced both countries inability to figure out what is wrong with me. So, 11 years ago I had major stomach p... -
- Kwinkle replied to Kwinkle's topic in Coping with Celiac Disease5I’m so confused…
Thank you. I already cut out dairy and eggs because I found out I was having a problem with them. To be honest I’m just getting worn out 😂- 1
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Welcome to the forum @Tarp! Some more information would be helpful. What is your age? What led you to investigate celiac diagnosis 11 years ago? What were your symptoms then? Do you have osteoporosis/osteopenia? What areas of the spine have been involved with your four surgeries? As you probably know, celiac disease damages the lining of the small bowel which typically results in malabsorption of vitamins and minerals. This, in turn, can result in bone demineralization and as well as neurological disorders. Because of your spinal surgeries, it might be difficult to sort out what is causing what. Are there nutrient deficiency related neurological problems going on? Are there nerve impingement problems going on from the surgeries? Both? Having said that, it's a pretty safe bet that you would do well to invest in some high potency vitamin and mineral supplementation to address the malabsorption problem. We routinely recommend a high potency B-complex, magnesium glycinate or magnesium citrate (not magnesium oxide), D3 (5000 IU daily) and zinc. Most of these in this list are vital to neurological health. Make sure all are gluten free. Costco's Nature Made and Kirkland Signature products are a good choice and reasonably priced.
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Welcome to the forum @Tarp! Some more information would be helpful. What is your age? What led you to investigate celiac diagnosis 11 years ago? What were your symptoms then? Do you have osteoporosis/osteopenia? What areas of the spine have been involved with your four surgeries? As you probably know, celiac disease damages the lining of the small bowel which typically results in malabsorption of vitamins and minerals. This, in turn, can result in bone demineralization and as well as neurological disorders. Because of your spinal surgeries, it might be difficult to sort out what is causing what. Are there nutrient deficiency related neurological problems going on? Are there nerve impingement problems going on from the surgeries? Both? Having said that, it's a pretty safe bet that you would do well to invest in some high potency vitamin and mineral supplementation to address the malabsorption problem. We routinely recommend a high potency B-complex, magnesium glycinate or magnesium citrate (not magnesium oxide), D3 (5000 IU daily) and zinc. Most of these in this list are vital to neurological health.
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I am at a loss with spine issues. I have had 4 spine surgeries. These were=all before my celiac diagnosis. Currently I am dealing with chest pain arm pain and burning with increased weakness in my legs. I have had bowel incontinence for 6 months. I had a nuclear stress test and heart issues were ruled out. I can not get a doctor to listen to me and diagnose me. I am afraid I will end paralyzed. I had a question of celiac 11 years ago and then was told I did not have it. Last month it was finally confirmed by biopsy.
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My journey started over 11 years ago. I know this because I recently went to set up an account here and discovered I had set one up 11 years ago, when I first suspected celiac. Also of note, it began in the US and continued in the UK, so I’ve experienced both countries inability to figure out what is wrong with me. So, 11 years ago I had major stomach pain, gas, bloating, nerve pain in hands and feet (clear MRI), anxiety, depression, migraines, and this weird gnawing pain in my stomach. PCP said IBS and sent me on my merry way. After chatting with friends, and at their suggestion, I gave up gluten and dairy (actually did a complete elimination diet) with fantastic effects. After I month I reintroduced and was in agony so went back to the PCP. She thought I might be celiac so sent me for full allergy testing and a celiac test. No idea which. This was I’m 2014/2015. It came back negative. But I’d been eating gluten for three days at that point and had not been told I needed to be eating gluten for the test. Was told it was IBS. Kept eating gluten. 2018 - by now the gnawing pain was constant. Figured it might be an ulcer. Other “IBS” pain and nerve pain. Was finally referred to gastroenterologist who did an endoscopy and biopsies and found chronic gastritis and H.Pylori but no evidence of celiac. Had a bucketload of antibiotics and the H.Pylori went away (confirmed by breath test). Alas the pain didn’t. Figured I didn’t have celiac but the gastritis remained despite clearing up the infection. Gave up gluten anyway because I felt better off it. 2019 / 2020 - moved to UK, grandmother died, Covid hit. With all this stress I started eating all the gluten like constantly everything I missed. Stomach hurt, but of course it did - I was eating like crap. Not just gluten, just bad food generally 2023 demanded h.pylori test because I’m convinced if I had it before I might have it again and maybe that’s why I’m in more pain than ever. Fecal test, came back negative. put on PPIs 2024 - went to the dr because of severe gas pains. They were so bad nothing helped and they were keeping me away at night. All my previous symptoms are worse than ever and now had stabbing ovary pain. I thought maybe now it’s all due to perimenopause. Dr doesn’t even examine me. Just tells me it’s IBS and tells me we will run blood test to rule out other things, just to be safe. Well, my IgA-tTG came back positive (67 0-20 is normal). They ran an EMA test and that too was positive. I finally felt I was getting somewhere. I went to the dr and she told me to quit eating gluten. I said I wanted an endoscopy before I stop eating gluten because that’s what the medical guidelines recommend. She wasn’t too happy about it but referred me to get an endoscopy. I had one and the took 5 samples from the duodenum (4xD2 and 1 x D1 - whatever that means). Well, results are in and my biopsy was normal. I am just at a loss now. I felt so happy to finally have an answer, but now am frustrated. I know I feel better gluten free and I tend to continue that way, but to have the positive blood tests then receive a negative biopsy (I was eating fully gluten prior to this for years) has just left me feeling …. I don’t know. Lost! Thanks for reading this.
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Thank you. I already cut out dairy and eggs because I found out I was having a problem with them. To be honest I’m just getting worn out 😂
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