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After A Short Gluten-Free Test, How Long Before You Can Be Accurately Tested?

Frankie-B

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Frankie-B Newbie
Frankie-B
Posted

Hi, I'm new here, and thanks to everyone for sharing their experiences -- I've been struggling for 8 years to figure out what's wrong with me, and knowing I'm not the only who's been told I need a therapist (for example) has been such a relief.

Without going on at length about all of my symptoms, I decided to try going gluten free 3 weeks ago. I couldn't say for sure that I felt a huge improvement, but then found out that because of my history of GI issues and another medical condition I was recently diagnosed with, testing for celiac is recommended. I also saw that you have to be actively eating gluten to get an accurate test result.

I started eating gluten at every meal on Friday morning. By Friday night (approx 12 hours later) I was having awful stomach pain and had to run to a toilet in the middle of a party. I'm on day 4 now, and it's not improving at all.

So, I was gluten free for 2.5 weeks, and after my experience going back on gluten, I'm definitely looking for a doctor to make an appointment with. Anyone have any idea how long I've got to keep eating gluten before I can have the testing done? I don't want to push for an appointment only to be told I have to come back later.

thanks!

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Christine0125 Contributor
Christine0125
Posted

I did a 3 week trial and then decided I wanted testing because my own trial was somewhat inconclusive. My doc had me eat gluten for 2 weeks before doing blood work but it sounds like it really varies what is recommended. My test did show positive for celiac after 2 weeks on gluten.

Hi, I'm new here, and thanks to everyone for sharing their experiences -- I've been struggling for 8 years to figure out what's wrong with me, and knowing I'm not the only who's been told I need a therapist (for example) has been such a relief.

Without going on at length about all of my symptoms, I decided to try going gluten free 3 weeks ago. I couldn't say for sure that I felt a huge improvement, but then found out that because of my history of GI issues and another medical condition I was recently diagnosed with, testing for celiac is recommended. I also saw that you have to be actively eating gluten to get an accurate test result.

I started eating gluten at every meal on Friday morning. By Friday night (approx 12 hours later) I was having awful stomach pain and had to run to a toilet in the middle of a party. I'm on day 4 now, and it's not improving at all.

So, I was gluten free for 2.5 weeks, and after my experience going back on gluten, I'm definitely looking for a doctor to make an appointment with. Anyone have any idea how long I've got to keep eating gluten before I can have the testing done? I don't want to push for an appointment only to be told I have to come back later.

thanks!

Lisa Mentor
Lisa
Posted

Hi, I'm new here, and thanks to everyone for sharing their experiences -- I've been struggling for 8 years to figure out what's wrong with me, and knowing I'm not the only who's been told I need a therapist (for example) has been such a relief.

Without going on at length about all of my symptoms, I decided to try going gluten free 3 weeks ago. I couldn't say for sure that I felt a huge improvement, but then found out that because of my history of GI issues and another medical condition I was recently diagnosed with, testing for celiac is recommended. I also saw that you have to be actively eating gluten to get an accurate test result.

I started eating gluten at every meal on Friday morning. By Friday night (approx 12 hours later) I was having awful stomach pain and had to run to a toilet in the middle of a party. I'm on day 4 now, and it's not improving at all.

So, I was gluten free for 2.5 weeks, and after my experience going back on gluten, I'm definitely looking for a doctor to make an appointment with. Anyone have any idea how long I've got to keep eating gluten before I can have the testing done? I don't want to push for an appointment only to be told I have to come back later.

thanks!

Hey Frankie and welcome! If you have been gluten free for three weeks, you might be okay for testing. But, if possible continue. Make an appointment as soon as you can.

And if you feel you can't handle it, just go gluten free. It's tricky in the beginning. But a positive dietary response is diagnostic as well. I've never been a fan of recommending a full gluten diet solely for the sake of a diagnosis, or at the request of so many doctors.

Read here as much as you can in the mean time and welcome to our community.

Pandoranitemare Apprentice
Pandoranitemare
Posted

I am very new to all this, and learning as I go, but from what I have encountered, plus information from the lovely people on this site....

This is how things have been for me so far:

I did a trial of being gluten free for 1 week (which did start to help with my symptoms), but I went back to eating gluten having discovered that it was very important to be eating gluten to be blood tested.

I then arranged to see my GP, and had been back on gluten for 3 weeks by the time I got an appointment. My GP still felt it was necessary to do a 4 week gluten challenge (because of my one week gluten free period), which I am now undertaking, so in total it will have been 7 weeks back on gluten, with the final 4 weeks really making sure I get plenty of gluten every day.

There is so much conflicting information on how much gluten and for how long, a person needs to ensure an accurate blood test. However, from what I have learned, the simple fact is that the blood tests are not that accurate, and there is no standard length of time to consume gluten before testing which will aid the accuracy other than 'the longer the better!' it seems.

It would also appear that a blood test can only be the start of the journey, and even a negative test can still lead to additional referrals and biopsies etc to get a proper diagnosis...and all the while eating gluten is a must, right up until all tests are over!

Personally, I am not sure I will be able to keep up eating gluten for that long...even this gluten challenge is hard, let alone the prospect of even more weeks/months for more tests if required.

Good luck on your diagnosis journey :)

ukdan Rookie
ukdan
Posted

The advice given to me was the equivalent of 3-4 slices of bread a day for at least six weeks (I am currently just over 4 weeks in myself) but I have heard longer. I think it comes down to the person and how your body reacts at the end of the day!

Pandoranitemare Apprentice
Pandoranitemare
Posted

The advice given to me was the equivalent of 3-4 slices of bread a day for at least six weeks (I am currently just over 4 weeks in myself) but I have heard longer. I think it comes down to the person and how your body reacts at the end of the day!

I am a little sketchy on what the 'equivalent of 3-4 slices of bread a day' actually is... without actually eating that amount of bread. I have just been trying to make sure to have as many things that contain gluten as possible, and having horrible glutenous cereal, pasta etc as much as possible. I certainly feel like I am getting enough gluten!

ukdan Rookie
ukdan
Posted

Sorry, I used to live on bread so it's easy for me to think in those terms!

However by the sound of it if you're eating glutenous cereals/grains/pasta on a regular basis you're getting enough. Gluten is hidden in loads of food as well so unless you're eating gluten free substitutes you may even be eating more than you think!

Good luck, from your reaction it sounds like you might have half your answer already!

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carriej82 Rookie
carriej82
Posted

This is such an interesting thread, I too have this question and there are so many different answers. I took the celiac disease profile blood test today because I could not wait any longer.

Most recent gluten history is - 4 days gluten free in September (which is when I discovered I was intolerant, had dozens of previously unexplained chronic symptoms that I'd suffered since childhood disappear overnight) then gluten-lite all through the fall, 10 days gluten free beginning of January, then decided I wanted to be tested and started eating gluten heavily again for 4 weeks, could not tolerate it, went back gluten-free 10 days, then back on gluten for 2 weeks. :) Had blood drawn today. Phew. We'll see what comes up. I went through INeedLabs.com which you can do without a doctor's order, and it was a great price for those of us whose insurance is high deductible. I figure if its negative I'll continue gluten for 6 more weeks and get tested again to compare levels. At least I can see if they go up, down, or stay the same and have a reference point. And if this one is positive, great, no more gluten, or wondering. My aunt has 5 daughters all diagnosed positively celiac and after hearing my story she said she would be surprised if I am not also diagnosed. We will see. Good luck to you all!

mamaupupup Contributor
mamaupupup
Posted

Hi there,

This is a bit indirect, since I'm going to give you the story of my 34lbs 5 yr old, but for what it's worth...

2/1/11 I pulled DD off gluten, not knowing she had to be on gluten to test accurately...after 2-3 months her symptoms improved significantly so I kept her off gluten for the most part (I'd say 80% gluten-free)

8/1/11 I found out she had to be on gluten to test for Celiac (she has two cousins with Celiac) and put her back on ONE serving of gluten a day at breakfast each day

12/1/11 Did bloodwork, came back negative for her. However, did same bloodwork for her sister who I thought at the time was asymptomatic and she came back as Celiac. (Now that she had positive bloodwork I see the symptoms...). Since my DD I thought had gluten issues came back negative, I let her eat all the gluten she wanted during the day (not at dinner--she itches and has joint pain overnight otherwise).

3/1/12 Decided to have all of us do genetic testing for Celiac and re-did Celiac Panels for us all. Bingo! My DD's bloodwork came back with DOUBLE the number on ttg. I frankly don't think I had gluten loaded her enough from August to December.

When I ran this by the specialist we finally saw last week, her opinion is that 6 months of 10 grams per day for children is necessary for accurate results.

Hope this helps a little!

Good luck!

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    • SamAlvi
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      By SamAlvi · Posted

      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing and biopsy for celiac disease. Unfortunately, where I live, access to comprehensive testing (including total IgA and endoscopy with biopsy) is limited, which makes things more complicated. Your explanation about small-bowel damage, nutrient absorption, and iron-deficiency anemia still aligns closely with my history, and it’s been very helpful in understanding what may be going on. I don't wanna get Endoscopy and I can't start eating Gluten again because it's hurt really with severe diarrhea.  I appreciate you taking the time to share such detailed and informative guidance. Thank you so much for this detailed and thoughtful response. I really appreciate you pointing out the relationship between anemia and antibody patterns, and how the high DGP IgG still supports celiac disease in my case. A gluten challenge isn’t something I feel safe attempting due to how severe my reactions were, so your suggestion about genetic testing makes a lot of sense. I’ll look into whether HLA testing is available where I live and discuss it with my doctor. I also appreciate you mentioning gastrointestinal beriberi and thiamine deficiency. This isn’t something any of my doctors have discussed with me, and given my symptoms and nutritional history, it’s definitely worth raising with them. I’ll also ask about correcting deficiencies more comprehensively, including B vitamins alongside iron. Thanks again for sharing your knowledge and taking the time to help. I’ll update the forum as I make progress.
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      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
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