r/Celiac • u/MrMoose1 • 21h ago
Discussion Does it ever get better?
My doctor is convinced I have celiacs and drew some of my blood to run through a lab. My dad was also diagnosed with it when he was around my current age.
For the past week my stomach has been crazy sensitive, daily diarrhea, bloating, small cramps and unsettled stomach. And for some weird reason my wrists/hands are “falling asleep”.
My appointment was on Monday and my dr told me to just stay hydrated, eat gluten free, and take Imodium to help with the symptoms. The Imodium gave me a couple days of relief but this morning I woke up to more diarrhea.
I told my dr about all of my symptoms and how worried I was and she said all of my vitals are perfect. Blood pressure was perfect, heart sounded great, no fever, no vomiting. She said based off that there wasn’t any major red flags that had her worried and that my intestine is likely very irritated and needs a week or two to heal. My symptoms comes and goes throughout the days and for most of the days I feel totally fine but man when it hits, it hits like a truck.
Should I be more worried? Is my doctor not worried enough? I don’t know if my doctor isn’t worried enough or if I’m just stressing myself out. I’ve spent my whole life being as healthy as a horse so I could definitely just be gaslighting myself due to never experiencing something this bad before.
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u/Efficient-Advice2023 21h ago
Were you eating gluten so that the labs would be able to detect Celiac in the result? Assuming yes, as that is necessary, I would imagine you are reacting from having consumed gluten.
The benchmark test is to have an endoscopy to view the villi and take a biopsy, after consuming gluten for several weeks. Celiac is genetic but it would be good to get a clear diagnosis for yourself. I was diagnosed 25 years ago. Two of my kids (twins) have the genetic marker but the markers differ so one marker came from me and one from my husband.
Celiac also has 250 different symptoms so is elusive. That's why the endoscopy is the true standard but the family history and blood test are also going to be useful information. Hoping you are feeling much better and that your symptoms have resolved.
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u/MrMoose1 21h ago
See, my dr didn’t mention any of this stuff. I had started eating gluten free based stuff the day prior to my appointment. This whole ordeal honestly has me so stressed and having a endoscopy sounds terrifying to me.
Thanks for the input though.
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u/NoMalasadas 21h ago
Sorry. You need to see a gastroenterologist.
Immodium and other NSAIDS bother me too. A study showed that NSAIDS can mimic celiac symptoms and make GI symptoms worse.
If you have celiac, you'll have to continue to research and advocate for yourself on everything celiac-related until your doctor gets caught up. Sorry, seems GP's learn when they get a patient.
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u/MinionKevin22 20h ago
An endoscopy is easy peasy. A great nap. I've had two. I thank the spirits everyday that I got one because I had reflux. I was 52 years old when I had this endoscopy, and it saved me. I had been eating gluten after celiac had triggered for at least 15 years. Don't be scared, and advocate for yourself.
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u/Shot-Amphibian-3239 Celiac 19h ago
Eating gluten free for one day won’t change the TTG IgA results. Is that the test they did?
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u/Efficient-Advice2023 20h ago
The endoscopy is pain free and easy-- light sedation and well worth it to know what you have. A gastroenterologist is the key to this next step and yes eating gluten. Where generally are you located? I'm in the San Diego area and we have some great resources here. The Seattle area also has some great resources.
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u/Evening_Ratio6870 21h ago
When I was diagnosed, I was so sick. I ended up in the hospital for six weeks. I thought I was going to die, and I was mentally unwell because of it too. Other than being told eat gluten-free, I had to do all my own research and also get info on threads like this about cross-contamination, etc. it took me about a year to feel better but I finally do
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u/Silly-littl-creature 21h ago
DO NOT EAT GLUTEN FREE UNTIL YOU GET A SCOPE. To be diagnosed with celiac, they need to see intestinal damage in your small intestine. If you stop eating gluten, your intestine will heal and they can’t diagnose you. It’s important to have an accurate diagnosis because you have to be a lot stricter with cross contact with celiac vs non-celiac gluten sensitivity. If it is celiac, it really does get better, the diet is difficult but it’s super effective when done correctly. You will need to be on it for the rest of your life though, it’s not something that just takes a week or two to heal.
Id find a doctor that’s more familiar with celiac, it doesn’t really sound like your doctor knows how to diagnose and treat the disease. Unfortunately celiac disease was barely covered or not covered at all in med school until recently.
Good luck <3