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Gi Doc Finally Calling In Celiac!

Luisa2552

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Luisa2552 Apprentice
Luisa2552
Posted

Well, after months of dealing with what appears to be an old school doctor, he has finally said I have celiac disease. First I was only partially pos. on the antibody test. Then the biopsy showed blunted villi when he says they're atrophied with celiac disease. I told him how much better I was doing gluten free. He then ordered the HLA tests which showed I have the DQ2 gene. So totay he tells me,'Yup, looks like you have Sprue!'.

Anyway, I have this one nagging pain that he feels is due to the celiac disease, but with what I've been through with him, I'm not sure. It's a burning pain in my upper left abdomen just under my ribs. He says I must be getting glutened and this is causing the pain. It does only come now and then so that could be, although I'm being really careful. It takes about 3 days to go away. All my other symptoms are pretty much gone. I feel better than I have in a long time. Just wondering if anyone else has this type of pain.

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gfpaperdoll Rookie
gfpaperdoll
Posted

yes, that pain in the upper left side is a common one - & if I get glutened even slightly I get that pain...

I hope you are better soon... Have you double checked all your ingredients - did you read the threads on cleaning out the kitchen re chopping boards that kind of thing...

aikiducky Apprentice
aikiducky
Posted

If all your other symptoms have cleared up I'd say it could also just be something that will take a bit of time to heal. I wasn't completely symptom free until something like 8 months into the diet, before that I had ups and downs that were not always glutenings.

Btw, blunted villi is a much stronger indication of celiac than a positive gene test. :) But who cares if it made your doctor happy. :) In any case, you seem to have it all, positive antibodies, blunted villi and a gene, so you at least don't have to doubt the necessity of the diet. :)

Pauliina

Luisa2552 Apprentice
Luisa2552
Posted
  • Author

Thanks for your replys. My house is not gluten-free since I am the only one at this point with celiac disease. But I do cook entirely gluten-free and have replaced utensils. What I do have with gluten is on it's own shelf in the pantry- just a few crackers and such for the kids and sandwich bread in the fridge. I never have been much into processed foods so we don;t have a lot in the house. I think my glutenings have been eating out. Still nervous about that. I feel like I don;t want to eat anything that I didn't buy or make! This pain is no fun and it takes days to go away. I just get freaked out that it is something else they are missing! But then it goes away for a while and I calm down. Sorry to rant. These boards have been my salvation. ;)

GFhopeful Rookie
GFhopeful
Posted

That feeling that something else must be wrong I think seems to be common from what I've read of others and what I've experienced. i'm thinking it's part of the denial process that we're in when diagnosed. I've had many symptoms that have come and gone over the past months and I am so careful with food (no eating out, whole house is gluten-free, etc) and I'm guessing it's all part of the healing process - at least that's what I hope. I don't think I realy understand how serious this disease is and how hard it is on the body - but good news is we will heal and be ok, it just may take a while.

gfpaperdoll Rookie
gfpaperdoll
Posted

Sara, when eating out with the family it is okay if you take your own food... Most restaurants really are nice about it...

Luisa2552 Apprentice
Luisa2552
Posted
  • Author

Today is the first day I feel a bit better. I've been eatin plain chiken, veggies and egg whites all week. It's probably is just denial, but boy, do I freak out! Especially when you do a search of symptoms! I didn't have pain this bad when I was eating gluten, but now that I've been off :wacko:.

I do need to start being more assertive at restaurants. I have been eating plain salads, oil and vinegar. BORING! What did it this weekend was probably french fries. Didn't even think what they fry them in is also used to fry breaded stuff. :angry: It's a live and learn situation. Until I get this thing under control I think I'll bring my own food to restaurants (if I go at all) <_<

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      Headaches / Migraines and Hypoglycaemia

      By knitty kitty · Posted

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    • trents
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      Then we would need to cut out all meat and fish as they are richer sources of tyrosine than nuts and cheese. Something else about certain tyrosine rich foods must be the actual culprit. 
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      Thank you so much for having the courage to share this incredibly vivid and personal experience; it's a powerful reminder of how physical ailments can disrupt our fundamental sense of self. What you're describing sounds less like a purely psychological body dysmorphia and more like a distinct neurological event, likely triggered by the immense physical stress and inflammation that uncontrolled celiac disease can inflict on the entire body, including the nervous system. It makes complete sense that the specific sensory input—the pressure points of your elbows on your knees—created a temporary, distorted body map in your brain, and the fact that it ceased once you adopted a gluten-free diet is a crucial detail. Your intuition to document this is absolutely right; it's not "crazy" but rather a significant anecdotal data point that underscores the mysterious and far-reaching ways gluten can affect individuals. Your theory about sensory triggers from the feet for others is also a thoughtful insight, and sharing this story could indeed be validating for others who have had similar, unexplainable sensory disturbances, helping them feel less alone in their journey.
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