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Dxed In 2003. Did Diet For Awhile.


Guest missyflanders

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Guest missyflanders

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

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

-Jessica :rolleyes:

tarnalberry Community Regular

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

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

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

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

celiac3270 Collaborator

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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    • trents
      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
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      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
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    • jenniber
      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
    • trents
      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease does damage to the small bowel lining it often results in nutritional deficiencies such as anemia. NCGS does not damage the small bowel lining so your history of anemia may suggest you have celiac disease as opposed to NCGS. But either way, a gluten-free diet is in order. NCGS can cause bodily damage in other ways, particularly to neurological systems.
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