Jump to content
  • Welcome to Celiac.com!

    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):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Eating Gluten Before Blood Test?


LuvMoosic4life

Recommended Posts

LuvMoosic4life Collaborator

SO I understand that before I get tested (if they do the antibody test) I should be eating gluten. Do I have to be eating it for a certain amount of time before the test?

I can't even go back to eating gluten right now, I tried and was completely miserable for 2 days and am still recovering today, I felt like i was coming down with the flu almost. I was just wondering if there has to be a certain level of gluten in your body built up, or if all it would take is say, a bagel in the morning before the test....

I havent been to a doc yet and just have been experimenting on my own. I was gluten free for a month or so and just wanted to see what would happen adding bread and cereal, ect... back in my diet.....I felt so horrible I got mad and cleaned my entire apt. of anything containing any traces of wheat/gluten! theres no way I can go back to living like that, and nobody understands what I feel like when I eat it, they think I'm making it up- so frustrating


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



Celiac.com Sponsor (A8-M):



nora-n Rookie

My daughter was six weeks back on gluten and sick all the time, but she did it voluntarily in order to get a proper diagnosis (we are in Europe and get money if we prove we are celiacs...)

I do not know how neccessary it is for you to get a diagnosis.

Here is a link about how long one must be back on gluten (the minimum time, and I think it applies to children....I have not seen anything specific for adults)

https://www.celiac.com/articles/12/1/How-lo...gful/Page1.html

nora

Ursa Major Collaborator

Quite a few people here have gone back on gluten in hopes of getting a proper diagnosis. Some ate gluten for several months, and still got negative test results.

In order to have even a slim chance of a positive test, you would have to eat three to four slices of bread a day for at least six weeks after being off gluten for a month, in my opinion. If you get that sick within two days, it would likely be dangerous for you to eat gluten for several weeks, only to confirm what you already know.... which is, that gluten makes you ill.

If you need something to show to people to prove your point, try getting tested with Open Original Shared Link, their tests are still accurate for up to a year after starting the gluten-free diet.

LuvMoosic4life Collaborator

I think I'm going to try to get the gene test. I'm also going to try one more time to eat gluten. My digestive system is still recovering from a week ago when I tried it....I was under a lot of stress too, so mabye I had a worse reaction b/c of that. It seems like being gluten freee and then going back causes your body to react stronger.

ravenwoodglass Mentor
I think I'm going to try to get the gene test. I'm also going to try one more time to eat gluten. My digestive system is still recovering from a week ago when I tried it....I was under a lot of stress too, so mabye I had a worse reaction b/c of that. It seems like being gluten freee and then going back causes your body to react stronger.

I would advise perhaps staying gluten free for a bit and then doing a challenge again if you feel you need to when you are feeling better.

Aleshia Contributor

I have another question... if you have been eating gluten and haven't gone gluten free for more than a day and then you eat gluten for like a week but don't have any breakfast on the day of your test can you get a false negative?? I just ran out of time for breakfast before my appointment and it all came back negative and now I don't know what to think cause I thought I finally had the answer... celiac disease is the only thing that can explain all my symptoms :((

aikiducky Apprentice

Skipping breakfast wouldn't affect the test. But you need to know that a lot of adults have negative blood tests anyway, and you might still have a positive biopsy despite negative blood tests.

Pauliina


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



Celiac.com Sponsor (A8-M):



Aleshia Contributor
Skipping breakfast wouldn't affect the test. But you need to know that a lot of adults have negative blood tests anyway, and you might still have a positive biopsy despite negative blood tests.

Pauliina

thanks... how am I supposed to get a dr. to do a biopsy if they are convinced that I don't have it then? despite me having almost every symptom ever mentioned on every site I could find ?? guess you can see I'm pretty discouraged. :(

LuvMoosic4life Collaborator
thanks... how am I supposed to get a dr. to do a biopsy if they are convinced that I don't have it then? despite me having almost every symptom ever mentioned on every site I could find ?? guess you can see I'm pretty discouraged. :(

Are you seeing a GI doctor? I know there are some GI doctors that specialize in digestive diseases so they should understand how the testing works. I'm having a problem even finding a doctor in my area right now b/c I have this feeling its going to be a long process just to find out if I have celiacs or not. This is why I think the gene test would be the best. If I dont have the gene, I dont have celiacs, if I do have the gene, I have had most of the symptoms and so have family memebers, so i dont see why they wouldnt do furthur testing...

Reggie Newbie
I would advise perhaps staying gluten free for a bit and then doing a challenge again if you feel you need to when you are feeling better.

Hi,

I have been diagnosed with Type 2 diabetes secondary to Hemochromatosis. I have had severe muscle,joint pain,overall illness,profound fatigue, sinus problems. My MD r/o Lupus,fibromyalgia. Thought it might be from my hemochromatosis. I went gluten free for 3 weeks and felt great. My energy returned,my pain ,and sinus problems gone. Just some very minor osteo pain in knees with ladder work,or walking on concrete-v- just getting out of bed. After reading the celiac forums I started eating gluten again to get an official diagnoses d/t insurance coverage. I'm suffering so,it is 3x worse going off and back on gluten. How long should I continue eating gluten before getting tested? I have read to eat 4 slices of bread everyday for a month,or less if symptoms are bad. Thank You For Your Time Reggie

nora-n Rookie

Hi, atleast six weeks, better 3 months or more, and 0,3 grams of gluten per kg.

That would add jup to about 21 g of gluten per 70 kg. This would maybe be more than three.four slices of bread (the protein amount in wheat cosists of about 90% gluten) so you might have to do some reading and some math to find out how much bread to eat.

it might even be 10-12 slices. You just have to do the math.

Mind you this is the amount for children. Noone has the numbers for adults and the amounts may vary.

And, normally the gut regenerates as fast as the damage is done by gluten, and only in times of stress the gut does not grow back quick enough to catch up. So you might not get this visible villi damage back on gluten unless you manage to duplicate the stress that cuased your original cliac symptoms to appear...

nora

mickaelcfr Newbie

In my case I only stopped gluten 3 weeks ago (I'm 28), and have the biopsy in one week.

Do you think that the result should still be quite accurate?

I started gluten again yesterday and have been having worse than ever of my usual symptoms (heart arrhythmias (benine PACs) and gallbladder and back pain/pressure).

I didn't really have evidence of improvement in 3 weeks but it definitely feels worse since yesterday.

Even though I feel bad with gluten since yesterday, I'm not sure 100% it's the cause yet, I'll definitely keep eating a pasta plate a day and some crackers and some shredded wheat for breakfast, as long as my gallbladder doesn't explode (it doesn't have stones), or my heart doesn't stop.

Also I had IgA Negative and IgG slightly positive, which the allergy doctor said it's equivocal, you should try a gluten free diet and come back in a month. In the mean time I finally decided to get the biopsy anyway because it wasn't really improving and it could have been something else (bacterial overgrowth, etc...) Maybe they'll catch something else on the upper endoscopy.

I guess the use of being diagnosed positive for celiac is that you know that you can't ingest a particle of it, whereas if you're just gluten intolerant, you might just need to avoid large quantities of it?

I fear once more the "You have IBS" diagnostic...

LuvMoosic4life Collaborator

I don't know if I have celiacs. But I do know for example that if I eat something like shedded wheat cereal for breakfast, sandwich for lunch and pasta with dinner, and if I did that everyday I would be in so much discomfort I wouldn t know what to do with myself and would not be able to go in public. I do experience GI symptoms even with a small amount of gluten, say just a few pretzels or a slice of bread, but the more it builds up in my system and the greater qauntities I eat of it, the more severe my problems become and they are much more than just GI symptoms: fatigue, muscle fatigue and sinus pressure are a close second to the GI symptoms.... I dunno if this would be just gluten intolerant or signs of celiac....if anything I definitly know my body is sensitive to gluten, no doubt. If I'm constantly relying on gluten products for my meals and end up being under a lot of stress I can feel myself falling apart, its like a cycle that has been happening my whole life. And when I get sick its the same thing everytime. It takes forever to recover...and one I do recover it seems it comes back not too much longer down the road. I've also noticed whenever I do get really sick its alwas around the time of my period. Even if I'm not getting sick I often feel soarness or slight pain in my tonsels a week before my period and stuffy sinuses.....everyone always thinks I'm BS-ing them. This is not cool when you are a singer :(

LuvMoosic4life Collaborator

has anyone ever gotten puffy-ness in thier face from gluten? I always thought this was a pms thing for me, but now that I'm a few days on gluten again the puffyness is back, even my lips look puffy but mostly my sinuses and I have puffy circles under my eyes... I'm starting to think this isnt even worth it just for a blood test.

buffettbride Enthusiast
has anyone ever gotten puffy-ness in thier face from gluten? I always thought this was a pms thing for me, but now that I'm a few days on gluten again the puffyness is back, even my lips look puffy but mostly my sinuses and I have puffy circles under my eyes... I'm starting to think this isnt even worth it just for a blood test.
My daughter gets puffy face and dark circles when she is glutened.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,964
    • Most Online (within 30 mins)
      7,748

    Cbear
    Newest Member
    Cbear
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      If black seed oil is working for his Afib, stick to it, but if not, I can say that ablation therapy is no big deal--my mother was out of the procedure in about 1 hour and went home that evening, and had zero negative effects from the treatment. PS - I would recommend that your husband get an Apple watch to monitor his Afib--there is an app and it will take readings 24/7 and give reports on how much of the time he's in it. Actual data like this should be what should guide his treatment.
    • Jacki Espo
      This happened to me as well. What’s weirder is that within a couple hours of taking paxlovid it subsided. I thought maybe I got glutened but after reading your post not so sure. 
    • Mari
      Hi Tiffany. Thank you for writing your dituation and  circumstancesin such detail and so well writte, too. I particularly noticed what you wrote about brain for and feeling like your brain is swelling and I know from my own experiences that's how it feel and your brain really does swell and you get migraines.    Way back when I was in my 20s I read a book by 2 MD allergist and they described their patient who came in complaining that her brain, inside her cranium, was swelling  and it happened when she smelled a certain chemical she used in her home. She kept coming back and insisting her brain actually swelled in her head. The Drs couldn't explain this problem so they, with her permission, performed an operation where they made a small opening through her cranium, exposed her to the chemical then watched as she brain did swell into the opening. The DRs were amazed but then were able to advise her to avoid chemicals that made her brain swell. I remember that because I occasionally had brain fog then but it was not a serious problem. I also realized that I was becoming more sensitive to chemicals I used in my work in medical laboratories. By my mid forties the brain fog and chemicals forced me to leave my  profession and move to a rural area with little pollution. I did not have migraines. I was told a little later that I had a more porous blood brain barrier than other people. Chemicals in the air would go up into my sinused and leak through the blood brain barrier into my brain. We have 2 arteries  in our neck that carry blood with the nutrients and oxygen into the brain. To remove the fluids and used blood from the brain there are only capillaries and no large veins to carry it away so all those fluids ooze out much more slowly than they came in and since the small capillaries can't take care of extra fluid it results in swelling in the face, especially around the eyes. My blood flow into my brain is different from most other people as I have an arterial ischema, adefectiveartery on one side.   I have to go forward about 20 or more years when I learned that I had glaucoma, an eye problem that causes blindness and more years until I learned I had celiac disease.  The eye Dr described my glaucoma as a very slow loss of vision that I wouldn't  notice until had noticeable loss of sight.  I could have my eye pressure checked regularly or it would be best to have the cataracts removed from both eyes. I kept putting off the surgery then just overnight lost most of the vision in my left eye. I thought at the I had been exposed to some chemical and found out a little later the person who livedbehind me was using some chemicals to build kayaks in a shed behind my house. I did not realize the signifance  of this until I started having appointments with a Dr. in a new building. New buildings give me brain fog, loss of balance and other problems I know about this time I experienced visual disturbances very similar to those experienced by people with migraines. I looked further online and read that people with glaucoma can suffer rapid loss of sight if they have silent migraines (no headache). The remedy for migraines is to identify and avoid the triggers. I already know most of my triggers - aromatic chemicals, some cleaning materials, gasoline and exhaust and mold toxins. I am very careful about using cleaning agents using mostly borax and baking powder. Anything that has any fragrance or smell I avoid. There is one brand of dishwashing detergent that I can use and several brands of  scouring powder. I hope you find some of this helpful and useful. I have not seen any evidence that Celiac Disease is involved with migraines or glaucoma. Please come back if you have questions or if what I wrote doesn't make senseto you. We sometimes haveto learn by experience and finding out why we have some problems. Take care.       The report did not mention migraines. 
    • Mari
      Hi Jmartes71 That is so much like my story! You probably know where Laytonville is and that's where I was living just before my 60th birthday when the new Dr. suggested I could have Celiacs. I didn't go on a gluten challange diet before having the Celiac panel blood test drawn. The results came back as equivical as one antibody level was very high but another, tissue transaminasewas normal. Itdid show I was  allergic to cows milk and I think hot peppers. I immediately went gluten free but did not go in for an endoscopy. I found an online lab online that would do the test to show if I had a main celiac gene (enterolab.com). The report came back that I had inherited a main celiac gene, DQ8, from one parent and a D!6 from the other parent. That combination is knows to sym[tons of celiac worse than just inheriting one main celiac gene. With my version of celiac disease I was mostly constipated but after going gluten-free I would have diarrhea the few times I was glutened either by cross contamination or eating some food containing gluten. I have stayed gluten-free for almost 20 years now and knew within a few days that it was right for me although my recovery has been slow.   When I go to see a  medical provide and tell them I have celiacs they don't believe me. The same when I tell them that I carry a main celiac gene, the DQ8. It is only when I tell them that I get diarrhea after eating gluten that they realize that I might have celiac disease. Then they will order th Vitamin B12 and D3 that I need to monitor as my B12 levels can go down very fast if I'm not taking enough of it. Medical providers haven't been much help in my recovery. They are not well trained in this problem. I really hope this helps ypu. Take care.      
    • knitty kitty
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.