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Did You Diagnose Yourself?


Rita L

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Rita L Newbie

This may have been asked before but I'm just curious. Did you suspect/diagnose yourself before your doctor suggested you may have Celiac? I did But then my mother had Celiac. I'm not a good "eater" since I don't get hungry until about 2pm so my husband is always nagging me, "Did you eat yet?" I finally said one day, "I feel better if I don't eat." Well that is when it clicked for me. I gave up the gluten for a week (and kept a food  diary for months after) and felt instant relief (esp from the acid reflux). Had the endoscopy and blood tests but since I did the blood test after giving up the gluten it showed negative for Celiac. But the endoscopy showed signs of scalloped edges to the villi.


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nvsmom Community Regular

I figured it out before my doctor did.  I first came across gluten when I was researching diets for my oldest son who is very mildly autistic.  He had occasional stomachaches and headaches so I suspected celiac disease but I wasn't sure because I have had that my entire life too... Wasn't that normal? A friend pointed out to me that I should get tested too but I dislike doctors (my past experiences have found them fairly useless unless I'm critical or need a prescription or surgery), and she kindly found out that the Biocard home test (tTG IgA) was on sale.  After some prodding I bought it and the positive result led me to the doctor who tested further and confirmed celiac disease for me.

 

Yep. I figured it out.  I first saw a doctor about stomachaches when I was around 8, so they missed it for a few decades.   :rolleyes: If Dr Google had been invented a bit sooner, I might have figured it out sooner. Three cheers for Dr Google!  LOL ;)

bartfull Rising Star

My Mom also had celiac. She was diagnosed back in the 1980's. So when I started having problems I knew. I was in denial for a long time but when my psoriasis got so bad that I couldn't play guitar anymore (I run a music store!) I knew I had better do something. With no insurance I decided to skip testing and just went gluten-free. Like Mom, my psoriasis cleared up. My digestive issues (which were mild) cleared up. My insomnia which had been with me all my life cleared up. Lots of other little problems that I never would have associated with celiac cleared up.

 

Life is good! :D

SMRI Collaborator

No, I was being looked at for something else and the dr added the Celiac testing and low and behold, I'm Celiac.

1desperateladysaved Proficient

I thought of it first.  But since I had 5 children and claimed to be VERY tired sometimes, I didn't give the doctor a lot to go on.  My chiropractor said gluten when I told her every tissue in my body felt irritated, but didn't elaborate.  I went home and looked up gluten and thought it would explain my fatigue, infertility, and brain fog.  I cut gluten and felt that it certainly did make a difference.  Then I had a genetic test.

 

Dee

poneelovesyou Newbie

I figured out that I was at the very least, gluten sensitive, just by experimentally removing gluten from my diet. I found that everytime I cheated, I had horrible depression and anxiety follwing right after. Finally after happening over and over, I was 100% certain that the gluten was causing my life long sturggle with depression and anxiety. I did a bunch more research, and now I think I am actually a celiac. I had alot of the celiac symptoms as child, being incredibly underweight despite my huge appetite. I have started gaining weight like crazy since being on a gluten-free diet, because my body seems to be absorbing nutrients way more effectively than ever. So, I'm convinced I'm a celiac and didn't realize. I asked my doctor to test me, and she didn't really want to. Idk why.c

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    • trents
      I might suggest you consider buckwheat groats. https://www.amazon.com/Anthonys-Organic-Hulled-Buckwheat-Groats/dp/B0D15QDVW7/ref=sr_1_4_pp?crid=GOFG11A8ZUMU&dib=eyJ2IjoiMSJ9.bk-hCrXgLpHqKS8QJnfKJLKbKzm2BS9tIFv3P9HjJ5swL1-02C3V819UZ845_kAwnxTUM8Qa69hKl0DfHAucO827k_rh7ZclIOPtAA9KjvEEYtaeUV06FJQyCoi5dwcfXRt8dx3cJ6ctEn2VIPaaFd0nOye2TkASgSRtdtKgvXEEXknFVYURBjXen1Nc7EtAlJyJbU8EhB89ElCGFPRavEQkTFHv9V2Zh1EMAPRno7UajBpLCQ-1JfC5jKUyzfgsf7jN5L6yfZSgjhnwEbg6KKwWrKeghga8W_CAhEEw9N0.eDBrhYWsjgEFud6ZE03iun0-AEaGfNS1q4ILLjZz7Fs&dib_tag=se&keywords=buckwheat%2Bgroats&qid=1769980587&s=grocery&sprefix=buchwheat%2Bgroats%2Cgrocery%2C249&sr=1-4&th=1 Takes about 10 minutes to cook. Incidentally, I don't like quinoa either. Reminds me and smells to me like wet grass seed. When its not washed before cooking it makes me ill because of saponins in the seed coat. Yes, it can be difficult to get much dietary calcium without dairy. But in many cases, it's not the amount of calcium in the diet that is the problem but the poor uptake of it. And too much calcium supplementation can interfere with the absorption of vitamins and minerals in general because it raises gut pH.
    • Scott Adams
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      Here are some results from a search: Top Liquid Multivitamin Picks for Celiac Needs MaryRuth's Liquid Morning Multivitamin Essentials+ – Excellent daily choice with a broad vitamin/mineral profile, easy to absorb, gluten-free, vegan, and great overall value. MaryRuth's Liquid Morning Multivitamin – Classic, well-reviewed gluten-free liquid multivitamin with essential nutrients in a readily absorbable form. MaryRuth's Morning Multivitamin w/ Hair Growth – Adds beauty-supporting ingredients (biotin, B vitamins), also gluten-free and easy to take. New Chapter Liquid Multivitamin and New Chapter Liquid Multivitamin Orange Mango – Fermented liquid form with extra nutrients and good tolerability if you prefer a whole-food-based formula. Nature's Plus Source Of Life Gold Liquid – Premium option with a broad spectrum of vitamins and plant-based nutrients. Floradix Epresat Adult Liquid Multivitamin – Highly rated gluten-free German-made liquid, good choice if taste and natural ingredients matter. NOW Foods Liquid Multi Tropical Orange – Budget-friendly liquid multivitamin with solid nutrient coverage.
    • catnapt
      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
    • trents
      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
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