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k2626

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k2626 Explorer

How were you diagnosed (blood test, biop), how long did it take to get a dx and what symptoms led you to seek help? Thanks so much


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masterjen Explorer

I ended up in emergency twice with severe stomach pains (actually, lower abdominal, which probably caused confusion among the medical profession) in mid Jan. 2010. Prior to that I had had intermittent pressure in my stomach (not bloating) for almost 3 months, which became severe and more constant in mid-Dec. 2009. I was just getting my act together to see my doctor when I landed in emergency. No answers came from those two visits (they did CT, blood-work and ultrasound), and in between the last ER visit and when I followed up with my family doctor a week later, I did some research on my own, and several signs pointed to possible celiac. Talked to my doctor, who then sent me for the antibody blood test, which came back "high probable for celiac". I was then sent to a GI specialist for confirmatory biopsy, which came back "highly positive". I was diagnosed via the biopsy in the 2nd week of Feb..

mushroom Proficient

For those of us who went years undiagnosed, it is heartwarming to hear a story of from first symptoms to diagnosis in a mere seven months! :unsure::) Maybe things really are getting better!

Jestgar Rising Star

My boss, who's an MD, suggested 'wheat' to me. I researched gluten and wheat, stopped eating it, and never looked back.

jerseyangel Proficient

"Nervous stomach", occasional fainting as a child. Teen years symptom free, in my late 20's after my second child was born, began having panic attacks, anemia, and nausea. Late 2003, had the flu and was never the same--developed chronic diarrhea, persistent anemia despite treatment, tingling/numbness/"burning", depression, anxiety, headaches, severe fatigue, and weight loss.

Family doctor was clueless--did blood and stool testing and said "possibly Chron's Disease". I read an article about Celiac Disease by chance and immediately asked for a referral to a gastroenterologist. He scheduled a biopsy (did not do the Celiac bloodwork). He could see damage with his eye, and sent me home that day with instructions to begin the gluten-free (and lactose free) diet. That was June 2005--I was 49.

masterjen Explorer

For those of us who went years undiagnosed, it is heartwarming to hear a story of from first symptoms to diagnosis in a mere seven months! :unsure::) Maybe things really are getting better!

I've read posts and have seen the bios of several of those on this board, and have noted how many have gone years before being diagnosed, and consequently have suffered from associated conditions. I feel very thankful I was diagnosed quickly. Doesn't matter much now, but I do wonder how long I, too, would have been undiagnosed if I hadn't done my research and hadn't specifically said to my doctor: 'My symptoms might be suggesting celiac. Can we check this out?'

k2626 Explorer

I sure hope these stories help otheres in search of answers too


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    • Wheatwacked
      They both do.  The peanuts add nutrients to the treat. Tootsie Roll: Sugar, Corn Syrup, Palm Oil, Condensed Skim Milk, Cocoa, Whey, Soy Lecithin, Artificial and Natural Flavors. M&M Peanut: milk chocolate (sugar, chocolate, skim milk, cocoa butter, lactose, milkfat, peanuts, soy lecithin, salt, natural flavor), peanuts, sugar, cornstarch; less than 1% of: palm oil, corn syrup, dextrin, colors (includes blue 2 lake, blue 1 lake, red 40, yellow 6 lake, yellow 5, yellow 6, blue 1, yelskim milk contains caseinlow 5 lake, blue 2, red 40 lake), carnauba wax, gum acacia. glycemic index of Tootsie Rolls ~83 gycemic index of M&M Peanuts ~33   The composition of non-fat solids of skim milk is: 52.15% lactose, 38.71% protein (31.18% casein, 7.53% whey protein), 1.08% fat, and 8.06% ash.   https://onlinelibrary.wiley.com/doi/10.1002/9781118810279.ch04  Milkfat carries the fat soluble vitamins A, D, E, and K. The solids-not-fat portion [of milk] consists of protein (primarily casein and lactalbumin), carbohydrates (primarily lactose), and minerals (including calcium and phosphorus). https://ansc.umd.edu/sites/ansc.umd.edu/files/files/documents/Extension/Milk-Definitions.pdf
    • Scott Adams
      But M&M's contain milk, and would not be at all like a Tootsie Roll.
    • Jmartes71
      I appreciate you validating me because medical is an issue and it's not ok at all they they do this. Some days I just want to call the news media and just call out these doctors especially when they are supposed to be specialist Downplaying when gluten-free when they should know gluten-free is false negative. Now dealing with other issues and still crickets for disability because I show no signs of celiac BECAUSE IM GLUTENFREE! Actively dealing with sibo and skin issues.Depression is the key because thats all they know, im depressed because medical has caused it because of my celiac and related issues. I should have never ever been employed as a bus driver.After 3 years still healing and ZERO income desperately trying to get better but no careteam for celiac other than stay away frim wheat! Now im having care because my head is affected either ms or meningioma in go in tomorrow again for more scans.I know im slowly dying and im looking like a disability chaser
    • Wheatwacked
      M&M Peanuts. About the same calories and sugar while M&M Peanuts have fiber, potassium, iron and protein that Tootsie Rolls ("We are currently producing more than 50 million Tootsie Rolls each day.") don't. Click the links to compare nutritional values.  Both are made with sugar, not high fructose corn syrup.  I use them as a gluten free substitute for a peanut butter sandwich.  Try her on grass fed, pasture fed milk. While I get heartburn at night from commercial dairy milk, I do not from 'grassmilk'.     
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