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Diagnosis

barilla

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barilla Explorer
barilla
Posted

Is it possible to get diagnosed without a positive biopsy? Back in May 06 I was tested for celiac disease. My levels were really high. So I went gluten free because the nurse on the phone said to eliminate gluten from my diet. I felt a lot better,, then my GI has me get a biopsy done knowing I've been gluten free. He asked if I could go back to eating gluten and I said No, that I feel much better without it. And the thoughts of going through all the pains and D.again,, forget it! He still wanted me to get the biopsy. So i did and my results came back negative. So my question is: Is there any other way to get a diagnose without have to go back to eating gluten?

I feel like I am stuck between a rock and a hard place!!

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Guest Villanfam
Guest Villanfam
Posted

Just ask them to run the same blood tests and see if your levels are lower, now that you are gluten-free.

barilla Explorer
barilla
Posted
  • Author
Just ask them to run the same blood tests and see if your levels are lower, now that you are gluten-free.

I've asked my doctor the last two times I saw him if he could check my levels and he won't. He says he doesn't check them again.

I think I need a new doctor!

Guhlia Rising Star
Guhlia
Posted

If you had positive Celiac test results then you have Celiac. There aren't false positives, just false negatives. In addition, you stated that your health improved greatly. This is diagnostic proof in itself.

SillyBoo Newbie
SillyBoo
Posted

I was diagnosed based on the blood test (Gliadin IGA 106, normal is <25), my debilitating symptoms, and positive response to the gluten-free diet. My doctor didn't think the biopsy was necessary - she also knew that I didn't need biopsy results to convince me to stick with the diet. Yup, maybe a new doc is a good idea.

Guest Villanfam
Guest Villanfam
Posted

Yeah it sounds like you do need a new Doctor, but if you are telling him point blank "Run the tests again." he has to. If you went in there and said "I think I have leukemia/an ulcer/strep throat/GERD/whatever, test me for it." He doesn't have to agree with you, he just has to do it. It's not like you are making an unreasonable request. He is working for you, remember that. I'd still look into getting a new Doc though :P

emcmaster Collaborator
emcmaster
Posted

Why do you need a diagnosis? For many of us, being diagnosed with celiac can mean never getting life insurance, having trouble being covered when switching medical insurance companies, etc.

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tarnalberry Community Regular
tarnalberry
Posted

You have two valid, positive tests (the dietary challenge is one of them), and one invalid negative test. IMHO, you should listen to your body. :)

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

      By trents · Posted

      I might suggest you consider buckwheat groats. https://www.amazon.com/Anthonys-Organic-Hulled-Buckwheat-Groats/dp/B0D15QDVW7/ref=sr_1_4_pp?crid=GOFG11A8ZUMU&dib=eyJ2IjoiMSJ9.bk-hCrXgLpHqKS8QJnfKJLKbKzm2BS9tIFv3P9HjJ5swL1-02C3V819UZ845_kAwnxTUM8Qa69hKl0DfHAucO827k_rh7ZclIOPtAA9KjvEEYtaeUV06FJQyCoi5dwcfXRt8dx3cJ6ctEn2VIPaaFd0nOye2TkASgSRtdtKgvXEEXknFVYURBjXen1Nc7EtAlJyJbU8EhB89ElCGFPRavEQkTFHv9V2Zh1EMAPRno7UajBpLCQ-1JfC5jKUyzfgsf7jN5L6yfZSgjhnwEbg6KKwWrKeghga8W_CAhEEw9N0.eDBrhYWsjgEFud6ZE03iun0-AEaGfNS1q4ILLjZz7Fs&dib_tag=se&keywords=buckwheat%2Bgroats&qid=1769980587&s=grocery&sprefix=buchwheat%2Bgroats%2Cgrocery%2C249&sr=1-4&th=1 Takes about 10 minutes to cook. Incidentally, I don't like quinoa either. Reminds me and smells to me like wet grass seed. When its not washed before cooking it makes me ill because of saponins in the seed coat. Yes, it can be difficult to get much dietary calcium without dairy. But in many cases, it's not the amount of calcium in the diet that is the problem but the poor uptake of it. And too much calcium supplementation can interfere with the absorption of vitamins and minerals in general because it raises gut pH.
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    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
    • trents
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