Jump to content

  • You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):

Re-Glutening How Long

Razzle Dazzle Brazell

Recommended Posts

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 ;)

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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. <_<

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      134,084
    • Most Online (within 30 mins)
      10,442
    Melvac
    Newest Member
    Melvac
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Aretaeus Cappadocia
      Edy's and Dreyer's ice cream

      By Aretaeus Cappadocia · Posted

      Sigh. I posted this yesterday based on the Safeway website. I went back again today to their website to double check. On the page where they are selling Vanilla Bean flavor, it has a distinct Certified Gluten Free label. Other flavors on the Safeway website didn't have the gluten-free statement. Today I went into the store. None of the flavors I looked at, including Vanilla Bean, have a Gluten Free statement. Is it safe? Who knows. The ingredients are either safe or nearly safe (some have "natural flavor"). There are warnings about "contains milk and soy" but not about wheat - this implies they are safe, but again, who knows. On the other hand, every flavor I checked of their Slow Churn line of ice creams has wheat as an ingredient. 100% not safe.
    • knitty kitty
      Edy's and Dreyer's ice cream

      By knitty kitty · Posted

      Do keep in mind that many of the newly diagnosed have lactose intolerance.  This is because the villi lining the intestinal tract are damaged, and can no longer make the enzyme lactAse which breaks down the milk sugar lactOse.  When the villi grow back (six months to two years), they can again produce the enzyme lactAse, and lactose intolerance is resolved.  However, some people (both those with and without Celiac Disease) are genetically programmed to stop producing lactase as they age.   Do be aware that many processed foods, including ice cream, use Microbial Transglutaminase, a food additive commonly called "meat glue," used to enhance texture and flavor.  This microbial transglutaminase has the same immunogenicity as tissue transglutaminase which the body produces in response to gluten in people with Celiac Disease.  Tissue Transglutaminase (tTg IgA) is measured to diagnose Celiac Disease in blood tests.  Microbial Transglutaminase acts the same as Tissue Transglutaminase, causing increased intestinal permeability and inflammation.   New findings show that microbial transglutaminase may be able to trigger Celiac Disease and other autoimmune and neurodegenerative diseases.   Microbial Transglutaminase is not required to be listed on ingredients labels as it's considered a processing aid, not an ingredient in the U.S.  Microbial Transglutaminase has been GRAS for many years, but that GRAS standing is being questioned more and more as the immunogenicity of microbial transglutaminase is being discovered. Interesting Reading:  Microbial Transglutaminase Is a Very Frequently Used Food Additive and Is a Potential Inducer of Autoimmune/Neurodegenerative Diseases https://pmc.ncbi.nlm.nih.gov/articles/PMC8537092/
    • Aretaeus Cappadocia
      Edy's and Dreyer's ice cream

      By Aretaeus Cappadocia · Posted

      There is a 10 year old post in this forum on Edy's and Dreyer's ice cream. The information is somewhat outdated and the thread is closed to further comment, so here is a new one. Edy's And Dreyer's Grand Vanilla Bean Ice Cream - 1.5 Quart is labeled "Gluten Free". This is a different answer than years gone by. I don't know the answer for any other flavor at this moment. On 1 May, 2026, Edy's website says: "As a general rule, the gluten in Edy's and Dreyer's® frozen dessert products is present only in the added bakery products, such as cookies, cake or brownies. We always label the eight major food allergens on our package by their common name. We recommend to always check the label for the most current information before purchasing and/or consuming a product. The exception to this rule is our Slow Churned French Silk frozen dairy dessert, which contains gluten in the natural flavors." https://www.icecream.com/us/en/brands/edys-and-dreyers/faq It seems that Edy's and Dreyer's are more celiac-friendly than they were 10 years ago. Once I found enough information to make today's buying decision, I stopped researching.
    • Aretaeus Cappadocia
      EDG 3 years ago fine, now it shows focal villous blunting,

      By Aretaeus Cappadocia · Posted

      probably not your situation @Mimiof2, but allow me to add one more to @trents list of celiac-mimics: "olmesartan-induced sprue-like enteropathy"  
    • knitty kitty
      Terrible Neurological Symptoms

      By knitty kitty · Posted

      My dad had an Abdominal Aortic Aneurysm.  Fortunately, it was discovered during an exam.  The doctor could feel my dad's heart beating in his stomach/abdomen.  The aneurysm burst when the doctor first touched it in surgery.  Since he was already hooked up to the bypass machine, my dad survived ten more years.  Close call! Triple A's can press on the nerves in the spinal cord causing leg pain.  I'm wondering if bowing the head might have increased the pressure on an aneurysm and then the nerves.   https://gulfcoastsurgeons.com/understanding-abdominal-aortic-aneurysm-symptoms-and-causes/ Abdominal Aortic Aneurysm Presenting as a Claudication https://pmc.ncbi.nlm.nih.gov/articles/PMC4040638/
×
×
  • Create New...