r/Celiac • u/Strive_Evolve • 13h ago
Question How Did You Discover You Have Celiac?
To preface, I don't know if I have celiac disease. I (21F) got my bloodwork done for the first time 2 months ago, and my platelets were very low (110k). Got another CBC and my platelets were lower (100k). So we did it one more time plus other tests and iron panels. My platelets went up to 137k, but my ferritin (iron) is 3ng/mL, which is REALLY low and kinda scary. I've known I had low iron for a very long time, but I didn't go to the doctor as a kid and my mom didn't take my concerns seriously. I have become numb to how fatigued I really am. My periods are very heavy, as I bleed through a super plus in two hours, so that could be an explanation. BUT I also know I had morning diarrhea frequently as a kid, it went away for a long time, and now it has recently come back. It's like twice a week, only in the morning, and the rest of the time I have normal bowel movements. I come from a family with anxiety disorders, so I wrote it off as that for a while. I also have consistently had canker sores since I was maybe 9 or so. I feel like all these symptoms add up to celiac, but I don't want to be certain.
My doctor has me doing iron supplements for the next 8 weeks, then we test my iron again to see if it changed. I just don't want to wait that long to start trying to rule out celiac. I'm seeing a gyno about my periods and am getting my blood tested soon for celiac.
I also want to include the symptoms I DO NOT have: irregular or missed periods, hair/skin/nail issues, headaches, migraines, tingling/numbness in hands and feet, unexplained weight loss, cramping, abdominal pain, nausea, constipation, pale skin, or bloating.
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u/and_er 13h ago
I knew when I was 15. I told my parents, but they always thought I was a hypochondriac and didn't get me tested, and I couldn't really go gluten free without their support so I just gave up. By the time I was an adult, they'd convinced me it was in my head. Despite, you know, the excruciating gut pain and urgent diarrhea and agonizing bloating. Somehow they had me thinking that was normal.
At 31 years old I had to have an endoscopy for an unrelated issue. When I woke up the doctor asked "Did you know you have celiac disease?" Surprised Pikachu face And then he said "I've never seen a small intestine like yours in someone who didn't have celiac disease." Ha. Awesome. I had NO villi at that point. I got the blood test next to confirm, and I went gluten free immediately.
Now my dad has celiac disease too, so I guess that's his penance for making me live with it undiagnosed for so long. And now they know I'm not a hypochondriac, I just have a fucked up body and am good at determining the cause before doctors do (I've been correct about almost every issue I've self-diagnosed).
I had a follow-up endoscopy last year (for the unrelated issue, not for celiac disease), and they did a biopsy and all my villi are back! Hooray! I can absorb nutrients again!
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u/SekaiIchiapple Celiac 13h ago
I moved from NYC to Philly & went to a new GP. I told her I was having some stomach issues (I was having diarrhea & constipation but nothing in the middle) because I wanted to be referred to a gastro. I also told her I was having horrible foot & knee pain and said “that’s probably a question for a podiatrist, huh?” Since I needed bloodwork, she offered to do a full allergy blood test including lactose & celiac. She also checked for diabetes, etc. I just wanted all my bases covered since I hadn’t done bloodwork in years.
Everything came back perfect (even my iron / ferritin) except I had the marker for celiac & my TTG iGA was abnormal.
I was not expecting it at ALL but so glad she semi randomly tested me.
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u/Strive_Evolve 12h ago
Maybe I should just get that blood test then. I feel like it would be odd for my doctor to deny it. But I also don't think I mentioned my diarrhea or anything bc I didn't give it a second thought until recently.
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u/SekaiIchiapple Celiac 12h ago
There are hundreds of different symptoms for celiac. One of mine is canker sores! You can definitely request a blood test & I recommend it. I’m not sure how insurance factors in, though. I do know the total of my tests was around $400? So I have to imagine certain parts weren’t 100% covered by my insurance, or maybe each individual copay added up to that? I’m not sure..
Edit: if your doctor won’t get you a test, get a different doctor or make up a symptom and get to a gastro lol. They are fundamentally misunderstanding celiac if they’re only looking at your iron.
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u/CrashingBlumpkins46 13h ago
The US Air Force kicked me out in basic training for having Chrons disease because I was getting sick every day.
I saw a GI Doc once I got back home and they actually correctly diagnosed me.
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u/Strive_Evolve 13h ago
Sorry to hear that. I actually plan to join the AF for cyber as an officer, but now I'm realizing I can't if I get diagnosed with celiac 😭😭😭 I'm even more scared now...
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u/summer_years 13h ago
My story sounds similar to yours. I had extremely low ferritin which didnt improve with iron pills. My primary sent me to a hematologist who did bloodwork that popped positive for celiac. I was very surprised because I have 0 GI issues. But sure enough an endoscopy confirmed. I am feeling better after iron infusions and my ferritin and other iron labs are back to normal
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u/Strive_Evolve 12h ago
Have you dealt with heavy periods? I don't know your gender lol, but I am curious what your cycle is like if you have one. Mine are definitely heavy to a point that I can see it causing the iron deficiency, but the other stuff, idk.
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u/summer_years 12h ago
It's hard to say because I am currently on birth control where I get a period every 3 months and they are pretty average. Before that though I had a period of about 6 months of continuous, light bleeding due to polyps. Once those were removed that was resolved. Hard to say for sure what is causing your iron deficiency but I'd definitely push for celiac bloodwork if you think it is a possibility. Iron is absorbed in the small intestine, and if the villi are damaged due to celiac, that can cause iron deficiency. This is why my ferritin didnt improve despite the oral supplements
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u/Street_Giraffe5772 7h ago
My kiddo’s symptoms sound a lot like yours. She was just diagnosed through the endocrinologist due to her small size when they ran labs they said some of her symptoms sounded like maybe that. Positive test and very low iron as well. She also had a lot of stomach aches and knee joint pain.
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u/Strive_Evolve 7h ago
Thank you for the info. I'm getting a celiac blood screening tomorrow and hoping it isn't celiac 😭 It is great that you are taking your kid to the doctor, as my parents neglected to. I think my low iron didn't start until I got my period, but the canker sores have been consistent since I was young. It's hard to remember when you're so young, definitely good to have records of it from a young age.
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u/CostcoHotdawgs 7h ago
Oily poops. Googled that and it said malabsorption which could be celiac. When I read that I just knew. And I was right. Also low iron. Mine was 7. Low b12. I straight up just asked my doc can we please rule out celiac. He wanted me to do oral iron and stuff too but after the celiac diagnosis I was able to go for an infusion since my damaged intestines wouldn’t be absorbing iron anytime soon. If they give you a hard time about getting tested just state that the longer you don’t know for, the more damage to your body so no time to waste
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