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banjos

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banjos Newbie
banjos
Posted

hello!

I was given the blood panel for celiac and one of the test came back "mildly positive" and had an endoscopy and it came back negative (everything looked fine). but i wanted to post an update on myself since going off of gluten thinking maybe it could help someone else. before having the blood test i had all of these seemingly unrelated symptoms. once i had the endoscopy i immediately went off gluten (my dr. told me to try gluten free for 3 months and see how i do)

after about a month of being strictly gluten free (and seeing a clear up of almost all of my symptoms) i decided to eat four bites (FOUR BITES) of my sons cereal. i thought "oh gee, technically i wasn't diagnosed with celiac so what's a few bites of cereal gonna do..."

oh wow was i wrong! i got so sick for three days. it was so awful. i new instantly that i should never be eating gluten again.

and then the other night i accidentally ate something that i thought was gluten-free but it turns out it was not - same thing - so very violently ill. so i know absolutely that the first time was not a fluke. i am literally in awe that now when i ingest gluten that it is this bad. before when i was consuming gluten on daily basis with no care in the world, it was never like this.

so i guess i just wanted to say that even if your dr. says that you don't have celiac but you respond to the diet - please listen to your body!

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MitziG Enthusiast
MitziG
Posted

Good for you for not letting flawed medical tests prevent you from taking care of your health!

It would seem you caught celiac when it was just taking hold, before it destroyed your guts- so what a great thing!

It is very typical for the response to gluten to become much more violent when you have been gluten-free for awhile. Your body does NOT want that poison re-introduced! Hopefully your dr will agree with you and give you an official dx- if you want it.

Roda Rising Star
Roda
Posted

At least your doctor recommended you try the diet despite the flawed tests as the last poster said. Good for you that you are feeling well now. My oldest son has had repeated blood work and a scope and all were negative. I decided to trial him after I saw the major improvements I saw in his brother(who is diagnosed by blood work) and he had great results also. I had toyed with the idea for two years because of his varrious symptoms but never could commit him with negative blood tests. After the improvements we saw, I wondered to myself "What was I waiting for? Why didn't I do this sooner?" We were accidently glutened in Feb. at a restaurant and the oldest boy had a worse reaction than my youngest diagnosed boy. So yes, it does pay to listen to your body!!

Carebear Apprentice
Carebear
Posted

I'm glad you posted! It kills me when people notice gluten is bothering them and continue to eat it because they're "not diagnosed". I feel like so many people fall into this category, some of my family members included!

beachbirdie Contributor
beachbirdie
Posted

hello!

I was given the blood panel for celiac and one of the test came back "mildly positive" and had an endoscopy and it came back negative (everything looked fine). but i wanted to post an update on myself since going off of gluten thinking maybe it could help someone else. before having the blood test i had all of these seemingly unrelated symptoms. once i had the endoscopy i immediately went off gluten (my dr. told me to try gluten free for 3 months and see how i do)

after about a month of being strictly gluten free (and seeing a clear up of almost all of my symptoms) i decided to eat four bites (FOUR BITES) of my sons cereal. i thought "oh gee, technically i wasn't diagnosed with celiac so what's a few bites of cereal gonna do..."

oh wow was i wrong! i got so sick for three days. it was so awful. i new instantly that i should never be eating gluten again.

and then the other night i accidentally ate something that i thought was gluten-free but it turns out it was not - same thing - so very violently ill. so i know absolutely that the first time was not a fluke. i am literally in awe that now when i ingest gluten that it is this bad. before when i was consuming gluten on daily basis with no care in the world, it was never like this.

so i guess i just wanted to say that even if your dr. says that you don't have celiac but you respond to the diet - please listen to your body!

So glad you posted! I am happy to hear you are doing great with the diet.

You are sure right, even if the doctor won't call it what it is, it's good to listen to your body!

So strange your doc wouldn't give you a dx, even with the scalloping and the positive bloodwork. Thankfully this is not a condition where we have to fight for the dx in order to get needed medications. We can control it without the doc's involvement.

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