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Brand New And Need Help

Elisa D

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Elisa D Newbie
Elisa D
Posted

Hi there everyone!

I'm new on here today and came to be a part of this community for support, as I undergo this new lifestyle change. My question that I can't get answered on the internet and feel too foolish to call the doctor back about is, what the antibodies rating is for a confirmed Celiac diagnoses. I thought I read on the paper something like between 30 and 50 for a positive result, but mine came back as 5000! Could that have just been another type of measurement? Have any of you had a rating that high? What does that even mean? I'm assuming that it's not in the same units and can't be as bad as it looks. Any help you can give me will put my mind at ease.

As a side note, while reading up on all of this testing stuff, I kept seeing my name everywhere on the info sheets. My name happens to be ELISA and that's the testing they use. What a coincidence!

I hope to be able to get a lot of information on here about celiac and especially from the pros.... you guys!

Thanks for getting back to me!

Elisa

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mushroom Proficient
mushroom
Posted

Hi and welcome to the board.

It sounds like the first thing you need to do is get a copy of your test results from your doctor (this is good practice always, you need to be proactive in your health care and another pair of eyes looking at the results is a good idea :rolleyes: ).

Each testing lab develops their own range for negative, possible, and positive so it's hard to comment on numbers without ranges. But 5000 certainly sounds whacky.and extraordinarily high.

When you get a copy of your results, post them on the board here for us to look at. :)

Elisa D Newbie
Elisa D
Posted
  • Author

Hi and welcome to the board.

It sounds like the first thing you need to do is get a copy of your test results from your doctor (this is good practice always, you need to be proactive in your health care and another pair of eyes looking at the results is a good idea :rolleyes: ).

Each testing lab develops their own range for negative, possible, and positive so it's hard to comment on numbers without ranges. But 5000 certainly sounds whacky.and extraordinarily high.

When you get a copy of your results, post them on the board here for us to look at. :)

Thank you for getting back to me. I will post it when I get a copy. I feel too silly for not having thought of it when I had my first appointment. I have my biopsy on Oct 10th so I'll ask my questions then.

Have any of the other people on here had number like that? That might shed some light on it too. Also, what were some other procedures done for everyone after the biopsy and confirmation??? Did the doctor want new blood work done as a base point in ongoing care and testing? Did they say how often they'd want to do a check up, will there be more biopsy's in a year or so? I feel so new and a bit lost with all of this and I'll need to learn to be more proactive with the doctor but didn't know the questions to ask the first time.

Thanks for your patience! Elisa

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      Thank you all for your advice and the dermatitis herpetiformis article. The latter made me realise I had stopped taking my antihistamine, which I will restart today. The Dapsone has cleared the rash entirely but I still get quite a bit itching, absolutely nothing to see though. I know its notoriously hard to clear and its still relatively early days for me.  The iodine issue is very interesting. I do eat quite a bit of salt because I have Addison's disease and sodium retention is an issue. I also have autoimmune hypothyroidism, not sure how a low iodine diet would play into that? Because of my Addison's I am totally steroid dependent, I take steroids 4 x daily and cannot mount any defence against inflammation. I need to increase my meds for that. Now that I know what is wrong I can do just that if Im having a bad day. Life is very sweet, just so damn complicated sometimes! Hey ho, onwards. Thank you again for your advice.  
    • trents
      how much gluten do I need to eat before blood tests?

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    • trents
      how much gluten do I need to eat before blood tests?

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    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
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