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Dxed In 2003. Did Diet For Awhile.

Guest missyflanders

By Guest missyflanders
in Post Diagnosis, Recovery & Treatment of Celiac Disease

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Guest missyflanders
Guest missyflanders
Posted

It did not help at all. Last November, I quit eating gluten free. I have not been sick or gassy etc. I have found that I am allergic to corn, probably why I had such problems on the celiac diet since I subsituted with a large amount of corn products. I have been monitoring my iron levels, which are steady. I tested negative with blood work last September, despite cheating many times. I am not feeling ill at all. My question is do I NEED to go back on the diet or could they have been wrong at the start. I had a biopsy and bloodwork done. Thanks for any help. My question stems from starting some medications that I want make sure are absorbed correctly.

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angel-jd1 Community Regular
angel-jd1
Posted

You were diagnosed by biopsy and bloodwork in the beginning??

-Jessica :rolleyes:

tarnalberry Community Regular
tarnalberry
Posted

If your diagnosis included a biopsy and bloodwork, then no, they weren't wrong. False positives are virtually unheard of - barring lab mistakes confusing your results with someone else. The problem is that a lot of celiacs are asymptomatic - you don't feel the pain, but your intestines will still be getting damaged, even if it's slowly. Not everyone reacts the same way, so testing how you're doing by checking your iron levels really may not be enough, and even the blood work may not come back with a positive if you're not eating a fair amount of gluten and don't have a lot of damage. The problem is, if you keep eating gluten, you will take a number of years off your life (I think the number's something around 10, on average), and you may find that you start experiencing subtle (or not so subtle) problems later.

KaitiUSA Enthusiast
KaitiUSA
Posted

If you were diagnosed you have it......

They would not be wrong with their original diagnosis...for them to catch celiac they deserve a pat on the back.

Of course being gluten free will cause you to have a inaacurate blood test even if you cheated...you need to be solidly on gluten for a good 3 months to get accurate results. You need to be eating a lot of gluten while being tested.

Whether or not you have symptoms you are getting the damage. You put yourself 40-100 times more likely to get cancer and other serious complications. Food is not worth your life. You most definitely need to be gluten free.

You also have to check lipsticks, etc to ensure you are completely gluten free.

Guest nini
Guest nini
Posted

If you had been dx with biopsy and bloodwork then it is positive. You can't have a false positive. You can have false negatives, especially if tested while consuming little or no gluten.

There are many celiacs who ALSO are allergic to many other foods like corn, soy, dairy, nuts, etc... my related food allergy is a sensitivity to meats raised with antibiotics and hormones and any foods processed with Nitrites and Nitrates.

It is extremely dangerous to just assume because the diet wasn't helping you, that the Dr's may have been wrong about the celiac in the first place.

My advice is to GO BACK to the dr. that diagnosed you in the first place, and let them know the diet didn't help, your celiac sprue could be unresponsive to the diet, and it could be just because you are also allergic to corn. OR it could be an other underlying MORE SERIOUS condition. You will need to consult with a nutritionist that is extremely knowledgeable about not only celiac but other food allergies. You need to be tested for food allergies to confirm that THAT is indeed what is going on with corn, and that there aren't other things you are also allergic to.

KaitiUSA Enthusiast
KaitiUSA
Posted

You could have been unresponsive due to the corn or because you often cheated.

celiac3270 Collaborator
celiac3270
Posted

A gluten-free diet will bring your levels down and make you appear normal, which is why people always say you should be on gluten for three months prior to testing to get a diagnosis of celiac.

It is natural for your antibody levels to go down on a gluten-free diet. If you go back to gluten, you may feel fine now, but your antibodies will eventually go back up and you'll feel sick again. Not to mention all the terrible complications you are predisposed to as a celiac on a gluten-filled diet.

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