Celiac signs and symptoms?


Has anyone else looked back after diagnosis and realized all of your strange symptoms that doctors brushed off or couldn’t explain are celiac signs and symptoms? After all the research I’ve been doing, I’m baffled at how so many things from my childhood and early adult life are classic celiac signs, and no doctor ever thought to test. I even went through a bout of gi testing 13 years ago, and because I couldn’t afford a procedure that I “needed”, the gi wouldn’t see me anymore and told me to just take Nexium (which made me worse). I wonder if it’s because awareness is up over the last decade that doctors are even considering Celiac testing now?

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Elizabeth 4 years 35 Answers 849 views 0

Answers ( 35 )

  1. Yep! I’ve got 20/15 vision now, ringing in my ear cleared up, sinuses are never stuffy or drippy any longer, fatigue is almost a foreign word, insomnia is becoming a distant memory, dropped 52 pounds without lifting a finger…. Been GF (and mostly sugar-free and grain-free) for nine years.

  2. I’m constantly now saying, “how could everyone have missed this?

  3. Yep same here

  4. Yes, it explains lifelong symptoms! So very disappointing that the symptoms kept being overlooked time after time.

  5. I was diagnosed with IBS at 12, they told me I needed to eat more Fibre, and whole wheat bread. I got sicker and lost more weight, my parents thought something was mentally wrong with me, because doctors aren’t wrong. Now I research and figure out on my own what steps I am willing to take for my health. I have a wheat allergy and was miserable for close to 20 years

  6. Yes, I was diagnosed with chronic fatigue and fibromyalgia in my early 20s. And I’ve just learned to live with it as best I could. Then about six months ago I cut out gluten, and virtually all my symptoms are gone. Almost 20 years it took….

  7. Yes. Isn’t it funny, that once I was diagnosed, and had done lots of research, I can just point out people that, if tested, they certainly would be diagnosed CD. And, yes, it certainly would have limited all those other diagnosed I had to go through.

  8. I’ve always been small. I thought i was lucky. I’m only 4ft10 and I looked fine (not skin and bones), but i was always on the low ends of the charts. My doctor pulled me aside once and asked me if I was anorexic🙄now I wonder..

  9. We missed mine for years, I went to dr with knowledge of thyroid issue connection with celiac and asked for celiac or food sensitivity test. With positive results in hand Dr. looked at me and said “what are your symptoms again?” Itchy arms. “How did we come about to test for celiac?” Lol

  10. Yes and it is sad the doctors have gone to collage to become a doctor and still they know nothing

  11. Yep same here

  12. Yes. I have not been officially tested but my list started at birth with failure to thrive. ? enamel tooth decay, liver issues, eczema, dairy Intolerance, anemia, the list goes on. Over my lifetime the list has gotten longer and I finally decided to take the leap and go GF. I have had scalp issues for years to the point I would pick my head until it bled and after a month of being gluten free it’s almost gone. I won’t ever eat gluten again.

  13. Thank you all for sharing this – I joined this group to learn about symptoms and signs as my 11-year old daughter is having an endoscopy on Friday to test for Celiac and other things. She has had stomach pain at night for years… and recently has to sit straight up for it to feel okay. This week, that doesn’t even help. All day long she is in pain and has missed 12 days of school this year. I am so hopeful to get a diagnosis early next week – and look forward to getting her on the right track. All the doctor’s told her she was fine and nothing was wrong – until we found one that really looked more into it. It’s a pivotal year, and I’m so hopeful!

  14. I was pretty sure I had Celiac, but had to strong arm my gastro into testing me.

  15. 100%!
    I have very little faith in Dr.’s. Always have. The older I get, it seems that the quality / knowledge is drastically decreasing every time I visit the dr.

  16. Yes! And I bet my oldest sister who died of Non-Hodgkin Lymphoma has it too. I am sure it came from my mother’s side of family as a cousin’s granddaughter has Celiac too along with myself and my daughter.

  17. My daughter had 10 cavities at 5 years old. Always brushed and took care of her teeth. I know now it was the gluten destroying her enamel. No one asked any questions about it.

  18. My story is a roller coaster ride. My son Ryan was having so many issues. He started out with being thirsty, had sweet breath, stomach aches, lost weight, had trouble sleeping, breathing.. etc. Then he started vomiting over 24 hrs, non stop. He’d drank over 2 gallons of apple juice because he was so thirsty. I took him to the ER and they diagnosed him with Type 1 Diabetes on Sept 16th, 2010. Then after a year of learning his routine for diabetes he started getting sick again. Canker sores, behaviour changes, stopped growing, diarrhea/ constipation, migraines, etc. I had heard that Type 1 & Celiac were common auto immune disease to have together, so I took him to the doctor and got him a blood test and endoscopy. He tested positive for Celiac Disease in 2012. 6 month later he was diagnosed with ADD as well.
    When I got home I sat down with my husband and tried to figure how we were going to navigate 2# auto immune diseases.
    I relived my 4# miscarriages, added up how long/ many migraines I had, brain fog, insomnia, joint pain, hip/sciatic pain- moving towards surgery down the road, Vertigo, unexplained dizziness, early menopause, lactose intolerance, digestive issues, etc. I felt like a shell of a person and was desperate for change. So rather than risk the doctors not finding Celiac (like so many of my friend’s) or gluten intolerance I went gluten free to protect my son and to give myself a new start. I never looked back. I’ve been pain free for 5 years and now the only time I get a migraine is when the barametic pressure outside changes. Later I found with all the research I’ve done that I have IBS as well. My husband decided 6 month into my being gluten free noticing the huge changes in me that he was going to get rid of the last thing that had gluten in the house. “His bread”(He had a separate drawer, knife, cutting board). My husband lives with chronic pain because of a bone spur on his neck. He also has stenosis of the spinal column. His pain has reduced by 85% by being gluten free. My sons diagnosis saved me. I don’t know if I’m Celiac or just intolerant but measuring the way I feel…well… I’ve never been the same since.

  19. Yep. I was 56 when my daughter gave me the name of celiac! Down to 98 lbs. look like the living dead. Tired of colonoscopies and endoscopics plus enough operations to take out organs and useless pills. Makes you wonder.

  20. My husband’s doctor told him he had serosis (sp?) of the liver, because he drank occasionally. No tests!! Then the doctor decided he had pancreatic cancer. No test!!! Finally, I had to sprout balls and make him mad to send my husband to a specialist. They even told him to get his affairs in order!!! Finally figured it out, celiac disease. What a journey. Thank God testing has gotten better. Wouldn’t wish it on anyone.

  21. Yes! Several of my Facebook memories from years ago mention feeling ill and “Food poisoning” now I know why!

  22. Guess so. I’ve been told for YEARS that I had IBS, then diverticulitus, and now he does a test and tells me I have celiac. Guess they’ve just become aware of it or had tests for celiac.

  23. Yes 38 I had to tell my dr to test me

  24. He said why you don’t have it

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