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I Think I Need To Eat Gluten For Blood Test

srfjeld

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srfjeld Apprentice
srfjeld
Posted

I learned I have Celiac disease 2 years ago through a stool/saliva test given to me by my naturopath. She said I was off the charts. I also test positive for the Celiac gene. And, I have DH. But, I've never seen a piece of paper that says I definitely have Celiac Disease.

Ever since my doctor informed me of this I went gluten free right away and noticed significant improvement almost immediately. We did the whole thing... new pans, new toaster, cleaned out the cabinets, etc... My issue is that I LOVE to eat out and even though I feel I'm careful, I still get gluten through cross-contamination on occasion.

Well, now I've learned I need a positive blood test with antibodies present and have read that results may come back negative since I've been gluten-free for so long. So now I feel I need to eat some gluten over the next few days in order to get + results. My symptoms show up as extreme fatigue, so I'll be napping a lot, joint pain, brain fog, DH flare ups and some gastrointestinal issues. My test is next week. Do you think a few days of eating small amounts of gluten will do it for me? Or do I just need to go for it and suffer the consequences? I should say I feel that I MUST have some antibodies in there b/c I currently have a DH flare-up.

Has anyone else had to consume gluten for testing after not eating it for a long time?

I have my eye on a pastry which I haven't eaten in over 2 years... I live in Portland, Oregon... ever heard of Voodoo Doughnuts? the Maple Bacon bar to be exact??? ;)

Thank you in advance for any thoughts or input!

Stephanie

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Cara in Boston Enthusiast
Cara in Boston
Posted

You need to consume a regular gluten-containing diet for 4-6 MONTHS before undertaking testing. It is different for every person, but even after 6 months, you could still test negative after being gluten free for so long. The symptoms return long before the antibodies are measurable in the blood.

Cara

Skylark Collaborator
Skylark
Posted

Sorry, but most celiac clinics say to eat 4 slices of bread worth of gluten daily (or a typical full gluten diet) for 2-3 months before a blood test to have a reasonable chance of a positive result. The antibodies in DH are in your skin, not your blood, and a fair number of people with DH continue to have flareups for quite a while after going off gluten. Going low-iodine helps a lot of people with DH.

There is a slim chance you could have a positive blood test if you have a lot of symptoms, but if you're not deliberately cheating on the diet it would be unusual. Most people don't get antibodies from making a good effort at the diet and only occasional CC, even if they do have some GI symptoms. Also, if you need an iron-clad diagnosis you will have to eat gluten for long enough to have a positive small intestinal biopsy as well as blood antibodies.

If you are sure your rash is DH, you are celiac. Dermatitis herpetiformis is autoimmune and ONLY shows up in celiac disease. Your best bet for a traditional documentation of celiac disease is to get the DH biopsied next to an active lesion to document the skin IgA deposits.

To be honest, I'm not sure why you are seeking more diagnosis when gluten so obviously wrecks you. In the US that piece of paper can be more of a curse than a blessing because it gets you the chance of being declined for insurance. Gluten challenges are not something to undertake lightly when you're celiac. We've had some board members get very ill and experience permanent declines in their health trying to get positive blood tests.

I'd see if your naturopath would document the celiac, maybe based on the presence of DH, genetics, stool/saliva, and symptom remission on the gluten-free diet.

srfjeld Apprentice
srfjeld
Posted
  • Author

Thank you for your comments and suggestions. I am in a financial bind and found that there are medical companies seeking plasma from people with auto-immune disorders (celiac being one of them) and offer a substantial amount of money for each donation. However, they need current blood tests with antibodies present... which makes sense since they are using the plasma to try and create vaccines. They (the laboratories) claim they have clients who are on gluten free diets who still test positive for antibodies in their blood. So, I'll just do what I can in the days leading up to my test and take my chances... I won't know until I try, I suppose. And, if I don't qualify, I'll be bummed but I'll survive. :)

Skylark Collaborator
Skylark
Posted

Gotcha! Well good luck with it and enjoy your pastries. I hope you don't get too sick. :huh:

srfjeld Apprentice
srfjeld
Posted
  • Author

Thank you... I'm a bit scared. I've never intentionally eaten gluten since going gluten-free. But, if they accept my blood test results, it'll be well worth it!

Skylark Collaborator
Skylark
Posted

Thank you... I'm a bit scared. I've never intentionally eaten gluten since going gluten-free. But, if they accept my blood test results, it'll be well worth it!

I have to be honest, they couldn't pay me enough for my plasma to make it worth eating gluten. I'm too afraid of more autoimmunity appearing. All the money in the world won't make another autoimmune disorder go away if you mess up your immune system with gluten.

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srfjeld Apprentice
srfjeld
Posted
  • Author

I hear ya... but I'm in no position to turn down the potential to make $1000 a week for a few days suffering. I'm a teacher who is already working a summer job and looking for more work... and I'm getting married this summer. I need to at least try.

Skylark Collaborator
Skylark
Posted

$1000/week??? Maybe I should see about selling my Hashimoto's antibodies.

Wow, good luck with the wedding. That's exciting news!

squirmingitch Veteran
squirmingitch
Posted

I have dh & I wouldn't gluten myself to win the freaking lottery! I have zero desire to suffer for years more of dh flares for a million dollars. Just IMHO.

(And I've been poor all my life)

tom Contributor
tom
Posted

You need to consume a regular gluten-containing diet for 4-6 MONTHS before undertaking testing.

...

Any link for that?

To me it sounds like a pretty extreme opinion.

Aren't ppl dx'd all the time w/ just weeks of gluten?

tarnalberry Community Regular
tarnalberry
Posted

I think what skylark is saying is that even if they pay you $1000/wk right now, if you end up with hashimoto's in two years from this "experiment", it's going to be a lot more expensive and painful to pay for meds and the effect on your life for 30-40 years of thyroid disease than a few months of donating plasma. Of course, there's no guarantee that would happen; it's a calculated risk like everything else.

tom Contributor
tom
Posted

Sorry, but most celiac clinics say to eat 4 slices of bread worth of gluten daily (or a typical full gluten diet) for 2-3 months before a blood test to have a reasonable chance of a positive result.

...

?

I keep seeing ppl saying "months" while new forum members mostly say their Dr scheduled their challenge for some # of weeks.

Here's a study that concluded 3 months is probably unnecessarily long. Open Original Shared Link

1471-230X-11-129-5.webp

They were investigating how long "celiac pill" trials should be.

srfjeld Apprentice
srfjeld
Posted
  • Author

I'm going to eat gluten for the next week and see what happens. I find it hard to believe that I wouldn't have any antibodies... I suppose it more depends on how many antibodies I will have by the time my blood is drawn. I won't know until I try.

I ate a biscuit. It was hard to take that first bite. My heart was beating fast. But then I thought, people do this all the time under doctors orders. I have to say, since going gluten free 2 years ago, I don't really feel like I miss out on much. Living in Portland, I'm pretty lucky to have so many alternatives at my finger tips. The most difficult times for me have been traveling and staying with family who don't know anything about Celiac disease. I've been glutened by family members, only b/c I felt so bad that they had "gone out of their way" to appease my diet, even though I knew it wasn't 100% gluten free. LIke the time my uncle stuffed the turkey with stuffing at Easter. I just ate a tiny bit of white meat from as far inside as I could... but took a very long nap later. Oh well, he somewhat tried. I'm certain he has Celiac disease, too. I tried to get him to back off gluten for a while but he's pretty stuck in his ways.

Thank you all for your comments.

Skylark Collaborator
Skylark
Posted

?

I keep seeing ppl saying "months" while new forum members mostly say their Dr scheduled their challenge for some # of weeks.

University of Chicago Celiac Clinic says 2-3 months. I was told 2 months at Warren Celiac Clinic at UCSD. Mayo clinic tests at 4 weeks but has patients continue eating gluten up to 6 months if they are seronegative at 4 weeks. You know better than them?

The study you linked supports a 4 week challenge ONLY if you can retest later like Mayo does. Notice that one subject in a cohort of only 8 was negative at 4 weeks, suggesting that a longer timeframe to develop TTG is probably not rare. Even if 1 in 8 were accurate, which it isn't because this cohort is too small, do you want to give 1 in 8 people on the board bad advice by telling them to challenge only 4 weeks? I find that unconscionable.

tom Contributor
tom
Posted

.. do you want to give 1 in 8 people on the board bad advice by telling them to challenge only 4 weeks? I find that unconscionable.

Sheesh .. ...kinda putting words in my mouth there. And I think you know it.

I said that the study said 3 mos can be unnecessarily long.

Ppl are going to do a challenge for as long as their Dr says to.

I don't tell ppl how long to do a challenge.

I object when ppl say "it NEEDS to be x months" or there's "no chance of a positive" unless 3 or 4 months or more.

(1st reply in this thread said "need" 4-6 months)

There's no data that I've seen that says that.

(There IS data that shows ppl being dx'd w/ less that 3 months)

srfjeld Apprentice
srfjeld
Posted
  • Author

On second thought... this might not be worth it. :(

kareng Grand Master
kareng
Posted

The univ of Chicago Celiac Ct sent me a post card to see if my family members wanted to be tested. It said a regular gluten diet for the last 3 months.

This plasma thing- even if you get a positive blood test, wouldn't you need to eat gluten and keep the antibodies up? At least until the first plasma draw? Maybe. Until he tests are completed?

You have been diagnosied with DH, so you have an official Celiac Diagnosis. Why would you want to get married with that itchy, ugly DH and not feeling well? I would just have the wedding I could afford and feel well and enjoy it.

Skylark Collaborator
Skylark
Posted

Sheesh .. ...kinda putting words in my mouth there. And I think you know it.

So stop nitpicking my posts, perhaps? <_< It gets really old.

nora-n Rookie
nora-n
Posted

I have just done a search using gluten challenge in pubmed, and the time and the amount of gluten varies widely, from four weeks to a year till relapse. (probably even way more than a year too)

It varies how long one needs to eat gluten for a positive antibody test, because the antibodies are made in the gut after the villi are damaged, and then the damage has to keep going on and the antibodies have to be so high that they spill over into the blood.

Here some had damage and antibodies after four weeks: Open Original Shared Link note they used 0,3 grams and 0,5 grams of gluten per kg per day. This is a lot, more like half a loaf of bread for some.

I think Mayo also says four weeks might be enough for a gluten challenge, or was it Chicago. But that is for some, not for all.

If you are in a bad shape, you might not be able to make enough antibodies to spill into the blood. Anyway, about 20% at least have negative blood tests but positive biopsies.

srfjeld Apprentice
srfjeld
Posted
  • Author

Thank you for all the info. I've been wearing my Google search button out these last few days. I finally put in a call to 2 of my doctors (naturopath and family doc) to see what they think. My naturopath is going to think I'm NUTS and tell me not to do this... family doc probably won't have a clue. It seems hard to believe that the body wouldn't be making enough antibodies to spill over when one feels like such crap that you know something bad is happening on the inside. Ugh... I think I'm gonna give up. I wish I never would have happened upon that blog that mentioned the need for Celiac plasma. It really would have been the answer to a lot of our problems. We are spending 25 bucks on our wedding ceremony (24 hour church of Elvis). It's kitschy and we've been together so long, we don't really care about that part. But, we did want to afford a nice place to stay at the coast for a couple nights. I'll just keep at it the old fashioned way... 2 jobs and looking for more! It's the American way! :)

tom Contributor
tom
Posted

So stop nitpicking my posts, perhaps? <_< It gets really old.

That's a pretty farfetched thing to say about my response to your wild misrepresentation of my post, declaring it/me "unconscionable".

The length of an effective gluten challenge has no consensus.

When ppl use absolutes like "need x months" or "no chance of a positive unless x months", I'll continue to throw my 2 cents in.

The sentences w/ absolutes are easily proven to be false. It's not just opinion that celiac disease does get dx'd w/ challenges of less than 3 months.

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