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My Biopsy Indicates Celiac...

ms. melinda

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ms. melinda Newbie
ms. melinda
Posted

I thought the biopsy is the most definitive test? I have not had a blood test. The doctor wants me to have more tests done. How likely is it the biopsy would be wrong? (I want it to be).

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Rachel--24 Collaborator
Rachel--24
Posted

Sorry, but its not likely the biopsy is wrong. It can only be false if its negative. I dont know why your doctor wants more tests but if the biopsy showed damaged or flattened villi then you have Celiac. Did you ever have the bloodtests? Do you have any symptoms? If you do have symptoms you should feel a whole lot better after you start the diet.

nettiebeads Apprentice
nettiebeads
Posted
I thought the biopsy is the most definitive test? I have not had a blood test. The doctor wants me to have more tests done. How likely is it the biopsy would be wrong? (I want it to be).

Believe me, if we could, we'd want all of our tests to be wrong about celiac. But it's not horrible and life threatening (if addressed properly) and you can live a very normal life with a wide variety of yummy foods. Have you done the diet at all? What kind of symptoms do you have? Why was the biopsy ordered in the first place? And usually the biopsy is the "gold standard" so I can't understand why the dr ordered more tests. Usually the biopsy is done last. Hmm. Personally, I'd do the diet challenge for 2 to 3 weeks, eat one day with gluten, then go right back and monitor your reactions and physical well being for the whole time. Cheaper than bloodwork. My 2 cents.

Annette

Guest nini
Guest nini
Posted

again, here we have an example of a Dr. that doesn't know much about Celiac. Should've done the blood tests first BUT since they didn't and since you've had the biopsy, and yes, the biopsy doesn't lie if it's positive. If it was negative we could say "oh they didn't take enough samples or they missed the damaged areas or there just isn't damage yet" BUT if there is damage, and apparently there IS, Yes my dear you have it. It's not the end of the world.

You DO NOT need the blood tests, not unless you want to monitor your levels once you go gluten free, BUT IMHO that is unnecessary.

Go ahead and start the diet immediately and trust me, if you get accidentally exposed to gluten once you've been off it for a while, (in most cases) your body will tell you right away. (some people do not have symptoms so this diet challenge doesn't always work there).

but to answer your question, the biopsy WHEN POSITIVE is not wrong. sorry. I know that's not what you want to hear, but look at this as the first day of the rest of your healthy life!

ms. melinda Newbie
ms. melinda
Posted
  • Author
Sorry, but its not likely the biopsy is wrong. It can only be false if its negative. I dont know why your doctor wants more tests but if the biopsy showed damaged or flattened villi then you have Celiac. Did you ever have the bloodtests? Do you have any symptoms? If you do have symptoms you should feel a whole lot better after you start the diet.

I have had symptoms since end of Oct. 05 as this was the pinnacle of my divorce. Lots of stress. I had a hard time eating, was nauseous, abdominal pain, diarrhea and vomiting. Finally went to my GP and he thought it might be an ulcer and said we would not know for sure unless we did an endoscopy. So I went forward with that to Know instead of treating the symptoms. Unfortunately, my X took me off the insurance prematurely (has since added me but no record yet at inurance co.) so I could not have a "real" visit with the gastroenterologist. He took time to tell me his diagnosis, but couldn't (wouldn't) go much further. Said I need to see my primary. Insurance is a nightmare!

As soon as I'm back on the insurance, I will see the gastro for an in depth consultation.

Rachel--24 Collaborator
Rachel--24
Posted

Sorry about your insurance troubles. My symptoms came on during a stressful time also but on the bright side for you....you didnt go years without a diagnosis. You'll get used to the diet and you'll be happy to not live with your symptoms anymore. Are you planning on taking more tests? If you are...keep eating gluten but in my opinion the biopsy is proof enough. Starting the diet will give you more insight than any test will. Doctors dont give much help when it comes to the diet and how to find all the hidden gluten so thats where this board will come in very handy for you. :)

KaitiUSA Enthusiast
KaitiUSA
Posted

Sorry to say this but you do have celiac. It is not likely that the biopsy is wrong. Biopsies can rule celiac in with a positive one but they can't rule it out with a negative one.

You need to go gluten free. Ignoring the diet can lead to serious and potentially deadly other things. I know it is hard to accept at first.

PS-do not go gluten free if you plan to get more tests-that will make them inaccurate...but you do have celiac so I do not see the need for more testing.

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    • trents
      Blood tests low iGA 4 years later digestive issues

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      Welcome to the forum, @Mmoc! Please include the reference ranges for the IGA and the TTG tests in your next post if you have access to them. We cannot comment much otherwise as different labs use different reference ranges for these tests and also different units of measurement. There are no universal standards as of yet so the raw test numbers are not always helpful. Having said that, if your IGA (what we usually call "total IGA") is low, the TTG-IGA score will be skewed and cannot be trusted. Other kinds of tests for celiac disease would need to be run, particularly those in the IGG family of tests. Perhaps this will be helpful:  
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      Hi there any advice welcomed. I have had 4 years of symptoms ranging from immune related anaphylactic symptom sudden onset food allergy to peppers/paprika/chilli/capsicum family derivatives. all these allergies fizzled out and following a food challenge test in hospital I reintroduced them a few months ago. Since then my digestive system is a mess. i have since noticed that 4 years ago when testing for iga allergies my iga level was .62 and my ttg was less than .1 (due to symptoms I was probably eating very plainly at that time). should I insist on being retested for celiac? I’ve since read two indicators for celiac include: sensitive to spicy foods when in flare up tooth enamel weakness and symmetrical discolouration patches on teeth which I have had since childhood on my two front teeth     thanks
    • trents
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      This article does not address migraines at all.  Yes, red wine and sulfites are often mentioned in connection with migraine triggers. With me, any kind of alcoholic beverage in very modest amounts will reliably produce a migraine. Nitrous oxide generators, which are vaso dialators, also will give me migraines reliably. So, I think most of my migraines are tied to fluctuations vascular tension and blood flow to the brain. That's why the sumatriptan works so well. It is a vaso constrictor. 
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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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