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Re-Glutening How Long

Razzle Dazzle Brazell

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Razzle Dazzle Brazell Enthusiast
Razzle Dazzle Brazell
Posted

Okay so I am now re-glutening despite the fact the allergist said it wasnt necessary (I know better thanks to all of you and my research) . I am now eating wheat after being off gluten for just about four weeks with a few slip ups. How long do you guys think i should gluten before getting my celiac panel done?

Thx guys ;)

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roxieb73 Contributor
roxieb73
Posted

Okay so I am now re-glutening despite the fact the allergist said it wasnt necessary (I know better thanks to all of you and my research) . I am now eating wheat after being off gluten for just about four weeks with a few slip ups. How long do you guys think i should gluten before getting my celiac panel done?

Thx guys ;)

I am in the same boat but 2 weeks in. My doc said 4 weeks but some say longer I have heard up to 3 months. I myself and going with the doc because it is sooo awful. I am sooo sick I can't hardly stand it and I am only half way through. But I am very new at this so I would see what the other ladies have to say.

Razzle Dazzle Brazell Enthusiast
Razzle Dazzle Brazell
Posted
  • Author

I am in the same boat but 2 weeks in. My doc said 4 weeks but some say longer I have heard up to 3 months. I myself and going with the doc because it is sooo awful. I am sooo sick I can't hardly stand it and I am only half way through. But I am very new at this so I would see what the other ladies have to say.

I am struggling as well and i am also having allergy symptoms that are completely going haywire! I woke up this morning with swollen, burning lips that became numb and blistered. The longer and more gluten I have the worse my symptoms are becoming including allergies! I am so swollen i am about three days behind on bms. I am taking metamucil now just to keep my gut going. It is horrible. I am gonna try and hang in there but im only six days in. Thx for sharing with me it makes me feel better someone knows my pain lol. That sounds evil but yeah :lol:

Cara in Boston Enthusiast
Cara in Boston
Posted

My doctor (BIDMC Boston - Celiac Center) said 4-6 MONTHS. I gave up after 3 months and did NOT have a positive result. (original blood test was positive, went gluten-free for just two weeks, subsequent blood test was negative, additional blood test after 3 month negative as well.) I've been "technically" diagnosed with gluten intolerance since all my symptoms go away when gluten free and return within days of eating gluten. My 7 year old son has celiac (diagnosed by biopsy) so it is not a stretch to think that I have it as well.

Other people have antibodies show up right away. It is different for everyone. I thought about trying to go longer, but it just wasn't worth it to me. I don't really care if my doctor thinks I am intolerant or if I actually have celiac - diet is the same.

My son's blood was still testing positive (very high) 6 months after being gluten free. His numbers didn't go down until 1 year gluten free.

Cara

roxieb73 Contributor
roxieb73
Posted

My doctor (BIDMC Boston - Celiac Center) said 4-6 MONTHS. I gave up after 3 months and did NOT have a positive result. (original blood test was positive, went gluten-free for just two weeks, subsequent blood test was negative, additional blood test after 3 month negative as well.) I've been "technically" diagnosed with gluten intolerance since all my symptoms go away when gluten free and return within days of eating gluten. My 7 year old son has celiac (diagnosed by biopsy) so it is not a stretch to think that I have it as well.

Other people have antibodies show up right away. It is different for everyone. I thought about trying to go longer, but it just wasn't worth it to me. I don't really care if my doctor thinks I am intolerant or if I actually have celiac - diet is the same.

My son's blood was still testing positive (very high) 6 months after being gluten free. His numbers didn't go down until 1 year gluten free.

Cara

Ahhh that is right it was you that said it. lol I just couldn't remember it right. 3 months was how long you lasted not the recommended amount of time. Ughh I sure hope that is not the case with me. I really need this diagnosis I know it would help at least 4 memebers of my family and maybe more. They won't get tested or even listen unless I test positive. :(

Razzle Dazzle Brazell Enthusiast
Razzle Dazzle Brazell
Posted
  • Author

Ahhh that is right it was you that said it. lol I just couldn't remember it right. 3 months was how long you lasted not the recommended amount of time. Ughh I sure hope that is not the case with me. I really need this diagnosis I know it would help at least 4 memebers of my family and maybe more. They won't get tested or even listen unless I test positive. :(

Thx guys for the comments! I am right with you roxieb73 about hoping i can get the actual diagnosis for this because i think it may be in my fam. My gma has lymphoma and diabetes super skinny with a swollen belly, my mother has constant fatigue and recurrent diarrhea and morning nausea, my brother couldnt gain a pound to save his life but eats like a rhino and has severe mood disorder. How wonderful it would be if all they needed to do was remove gluten!

Razzle Dazzle Brazell Enthusiast
Razzle Dazzle Brazell
Posted
  • Author

My doctor (BIDMC Boston - Celiac Center) said 4-6 MONTHS. I gave up after 3 months and did NOT have a positive result. (original blood test was positive, went gluten-free for just two weeks, subsequent blood test was negative, additional blood test after 3 month negative as well.) I've been "technically" diagnosed with gluten intolerance since all my symptoms go away when gluten free and return within days of eating gluten. My 7 year old son has celiac (diagnosed by biopsy) so it is not a stretch to think that I have it as well.

Other people have antibodies show up right away. It is different for everyone. I thought about trying to go longer, but it just wasn't worth it to me. I don't really care if my doctor thinks I am intolerant or if I actually have celiac - diet is the same.

My son's blood was still testing positive (very high) 6 months after being gluten free. His numbers didn't go down until 1 year gluten free.

Cara

Wow! That sounds crazy! Seems like as bad as your symptoms are and the fact that your son has this genetic condition, your doctor would be okay with diagnosing you. If you go to the doctor with a headache, although they cant measure it or do bloodwork, they are quick to diagnose you as having a migraine. It seems so backwards. When on earth are they gonna find a more accurate way to definitively test for celiac considering false negatives are so common? Wondering whether I really am waisting my time and money. <_<

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Cara in Boston Enthusiast
Cara in Boston
Posted

I know - it is crazy.

My younger brother is experiencing some of the same symptoms I had (neurological) and they are doing all the tests (and completely freaking him out) that I had 5 years ago (MRIs, tests for MS, etc.) I keep telling him to just stop eating gluten but since he had a negative blood test (just one, not the complete panel) he doesn't think that is an issue. To him it sounds more reasonable to suspect a brain tumor than his pizza crust. CRAZY.

Cara

roxieb73 Contributor
roxieb73
Posted

Thx guys for the comments! I am right with you roxieb73 about hoping i can get the actual diagnosis for this because i think it may be in my fam. My gma has lymphoma and diabetes super skinny with a swollen belly, my mother has constant fatigue and recurrent diarrhea and morning nausea, my brother couldnt gain a pound to save his life but eats like a rhino and has severe mood disorder. How wonderful it would be if all they needed to do was remove gluten!

Well as sad as it sounds let's hope for 2 positives. lol ;)

Razzle Dazzle Brazell Enthusiast
Razzle Dazzle Brazell
Posted
  • Author

I know - it is crazy.

My younger brother is experiencing some of the same symptoms I had (neurological) and they are doing all the tests (and completely freaking him out) that I had 5 years ago (MRIs, tests for MS, etc.) I keep telling him to just stop eating gluten but since he had a negative blood test (just one, not the complete panel) he doesn't think that is an issue. To him it sounds more reasonable to suspect a brain tumor than his pizza crust. CRAZY.

Cara

Haha! Oh my goodness that IS crazy. Kinda sad but yeah. Im starting to think with not being too terribly ill my life....besides rapid heart rate episodes...that i may just be badly intolerant. Thats when i start thinking about things like having cherry coke colored urine and being diagnosed with interstitial cystitis and my history of anemia. I mean the doctor acted like that sometimes happens when someone gets a virus. I should have looked at her and said i dont know many people who get a virus that bad and dont even know they are sick other than bloody urine! Something caused damage for me to have protein in my urine every year and the blood that one time. Why cant docs admit when they just dont know sheesh!

Razzle Dazzle Brazell Enthusiast
Razzle Dazzle Brazell
Posted
  • Author

Well as sad as it sounds let's hope for 2 positives. lol ;)

Hehe :-) i agree with ya on that. :P

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