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Hello,

I posted previously about my symptoms and history of Lupus. I have a a GI apt at the end of this month. My question- do people start the diet without every getting an official diagnoses and if so, are there any health dangers in that?

My husband would like me to continue the diet, but if there is a risk, I would rather wait. He is also afraid it might take a lot of time to get an official diagnoses. I hope this makes sense.

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If you aren't eating gluten, it will be hard to get a Celiac diagnosis, if you have Celiac. You don't make antibodies to gluten if there is no gluten.

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You need to stay on gluten until all testing is done for the best chance of a accurate result. However if you have been strictly gluten free you may react strongly to adding it back in. Your regular doctor can order the celiac panel so that is waiting for the GI appt. If you haven't been gluten-free very long then there is a chance it will still be positive. If you have children it can be important to get a diagnosis since they also need to be tested, whether they have symptoms or not, if you are celiac.

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You need to stay on gluten until all testing is done for the best chance of a accurate result. However if you have been strictly gluten free you may react strongly to adding it back in. Your regular doctor can order the celiac panel so that is waiting for the GI appt. If you haven't been gluten-free very long then there is a chance it will still be positive. If you have children it can be important to get a diagnosis since they also need to be tested, whether they have symptoms or not, if you are celiac.

Thank you for your responses. It's only been 3 days. :)

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Right, the blood antibodies will be reduced if you stop eating gluten. The endoscopy may still pick up some damage if they get the reight spot on the biopsy. But it may not also. The only risk is that by starting the gluten-free diet before the testing that your testing will be inaccurate. It is possible you will get inaccurate results since you have been gluten-free already.

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Once gluten is removed getting diagnosed with Celiac becomes harder (it is not an easy process to begin with). I can think of two major reasons to get a diagnosis:

1) already mentioned: if you have children it is important for them to be tested if you have Celiac Disease. Many symptoms of Celiac go unnoticed or are simply dismissed because it's just a little of this or a little of that. With Celiac Disease those small symptoms will continue to cause worse health problems as time goes on. There are also "Silent Celiacs" with no symptoms but the damage to the intestine has already begun - far better to get those with a genetic link tested, then wait for their bodies to become damaged. Children can often have even a tougher time getting a diagnosis than adults, so getting them tested periodically is wise. If symptoms are present and blood tests are negative, trial them on a gluten-free diet for at least 3 months to monitor symptoms.

2) some are fortunate to have major health improvement within the first days or months of removing gluten, but there are those of us - often the ones that went undiagnosed or misdiagnosed for many years - that take years to heal. There may be some improvement by removing gluten and then little or no improvement for days, weeks, months and even years. It is very difficult to be completely gluten free - I know there were many days for me that I had difficulty believing gluten was the root of my problem -- had I not had a diagnosis I don't know that I would have been as careful or diligent about staying gluten-free.

While you can certainly remove gluten without a diagnosis, I strongly suggest getting your blood work done minimally. Once gluten free, you lose the opportunity to get those initial results - which may become very valuable to you in monitoring your health.

Good Luck to you :)

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Thank you all so much for your responses. I talked it over with my husband and I have decided to back to eating normal until I am tested. :) Gottaski, you put exactly how I feel into words about my children. I don't want to never know if I have it or not. Especially when it comes to the health of my kiddos and me being healthy for my kids.

My son has severe autism and he relies on me and my hubby to take care of him. :)

I will stay posted.

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Right there with you...my kid's symptoms hurt me worse than my major ones - every time.

Glad you found us...keep asking questions...we have all gone through this and know how frustrating the diagnosis and tough the transition.

I hope your diagnosis goes quickly. Often you can call your primary to get all the blood tests. If they come back positive you may be able to get processed into gastroenterology quicker - thereby shortening the wait to remove gluten. With your symptoms I do think you should remove gluten for 3-6 months regardless of test results.

Good luck to you and your family!

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