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Self-Diagnosed with Celiac: What Now?

Mysteria

521d

So, I kinda self diagnosed myself with celiac disease as I couldn’t afford to test it. I told everyone that I had celiac- cause my symptoms aligned perfectly. Anytime I have anything with wheat I vomit and get the worst nausea of my life I cut out gluten a year ago and felt so much better- literally chnaged my life I finally got a test- and it was negative. I’m confused- I’ve had nausea for all of life and it’s been severe- My problem is I already told everyone I was diagnosed when I wasn’t And now that it’s negative I don’t know how to go back and tell everyone it’s negative I also read online and it says that if you already cut out glutne than it can come up negative which is what I really think happened- as I legitimately vomit and have horrible diarrhea anytime I eat gluten Would it be unethical for me to keep saying I have celiac even though I’m negative? I don’t have the money or the mental energy to eat gluten again and get another test

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Celiac Disease

Diarrhea

Anxiety (Including GAD)

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Top reply
    • slothlovee

      416d

      @Mysteria How did you get through it? Every time I think about making it official I literally can’t keep it down.

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    • Mysteria

      451d

      Well hey silly update- I decided to eat gluten and redo the test (believe me it was miserable) and I got a postive test so I do have diagnosed celiac now lol

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      • slothlovee

        416d

        @Mysteria How did you get through it? Every time I think about making it official I literally can’t keep it down.

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    • LogansMum

      482d

      What happens with coeliac is, everyone has fingers in their intestine called villi. When you have gluten, those villi get eroded. If you've been a year without gluten those villi grow back, that could be the reason you came back as negative for coeliac.

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    • GF4LIFE

      506d

      I totally think it is acceptable to say it. So many people get confused by all of the different reasons for not eating gluten and if saying you have celiacs makes it easy for them to understand then totally ok. Also since you cut out gluten before the test it is very likely the test was inaccurate as you have to have a certain amount for damage to show up. Do what’s easiest for you and keeps you and the good you eat safe.

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    • maharahnee

      520d

      Sorry for your dilemma. Pays to be truthful but done is done. Being sensitive to gluten or grains is not criminal. Live your life the best you can. Many people like myself have multiple sensitivities. Anxiety is part of the overall picture. Seek support from other areas and people. Trust in God. Prov. 3:5,6.

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    • Kat1303

      521d

      Find me gluten free is a great app!

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    • slothlovee

      521d

      Yes, celiac tests almost always come back negative if you’ve been avoiding gluten for at least several weeks! You are completely valid to tell whoever you want.. I have had the same situation!!

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    • Foxlover

      521d

      I’ve been gluten free for fifteen years , and yes I think that’s why it came back negative. I don’t know what grocery stores you have where you live, but there’s a lot of gluten free options . Also if you go online you can find some restaurants, a lot of places have options now.

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    • Jea

      521d

      unethical? definitely not. saying you have celiac doesn’t hurt anyone. the reason you should make sure is for your own health! i have celiac as does my entire family, and ALL of our blood tests came back negative. do a stool test if you haven’t already! that’s where we found out we actually did have it, apparently it’s much more accurate than the blood test. it’s a little weird but it’ll be good to see what your results come back as lmao. if you really don’t wanna have gluten again though, F it- say whatever you want to people! the reason it would be good to make sure though is because there are other things celiac can be indicative of which you might wanna test for- i found out i had a genetic condition which was suspected due to multiple reasons including confirmed celiac disease. the point is- you could always just have a strong sensitivity or allergy to gluten without actually having celiac, but you don’t owe anyone an explanation and if just saying you have celiac is easier i don’t see why you shouldn’t say it. if you decide you’re willing to go through eating gluten again to try the stool test it could help you progress in your medical journey though. good luck!

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      • Mysteria

        521d

        @Jea thank you- my fear is that I’ve told my mom and my long term partner that I was diagnosed and I wasn’t- what if we go to the doctors together and it somehow comes out the test was negative. Even though I know I have it- and if I didn’t tell them that I was diagnosed they wouldn’t have taken it seriously

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        • Jea

          521d

          @Mysteria do you normally go to the doctors together? do you feel like if you tell your mom the truth she won’t take you seriously?

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    • Kat1303

      521d

      It is absolutely acceptable. I had cut gluten out of my life for two years before getting tested for celiac, and my allergist told me that even though it says negative, there's a high chance I am celiac because of how my body used to react to anything with gluten. It's totally okay

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☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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