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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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      By trents · Posted

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    • WildFlower1
      Contradicting length of time for gluten challenge - please help to ensure not getting false negative. Thank you!

      By WildFlower1 · Posted

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    • WildFlower1
      Contradicting length of time for gluten challenge - please help to ensure not getting false negative. Thank you!

      By WildFlower1 · Posted

      Hi there, I have been scouring the forums, medical journals, celiac websites, speaking to my doctor and there seems to be a contradiction in the exact amount of time one must do the gluten challenge for a blood test. Let me please express my gratitude for taking your time to help! I will try and keep this short. In a nutshell, I am positive genetically for celiac. Previously for many years 10+ I have been on a strict gluten free diet. At a very young age, I had infertility, hair loss, low iron, stomach problems, neurological symptoms, continued low bone density etc. etc. all the symptoms that line up with celiac.  I could never get an “official diagnosis” because I was not eating gluten for years.   Recently, I had a bone density scan, and was shocked at the results. I am young and my low bone density is continuously lowering. This lead me  to seriously consider doing the celiac blood test to confirm if I actually have celiac. Years ago, I had an endoscopy and they did a biopsy saying it was negative for celiac - but I had been on a gluten free diet for years. Now, I asked my doctor if I can start the gluten challenge and get this over with. My doctor said two weeks then get the blood test. I have been having 2-3 pieces of bread daily. After four weeks of doing this, I went for the bloodwork - it came back negative for celiac. I am continuing to eat bread daily, it has now been over 6 weeks. I am not able to get an endoscopy. Please, from your experience how long really must I eat bread daily to ensure I do not get a false negative blood test for celiac? I have read up to 12 weeks. One doctor advised this is foolish to even do this gluten challenge as I am damaging my body. My other doctor said 2 weeks eat it, but it showed negative. But with my recent continuous lowering of bone density I personally need to rule celiac out.   Thank you VERY much for your help, I truly appreciate it!!
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      By Scott Adams · Posted

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