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Testing After Beginning gluten-free Diet?


Raining Skittles

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Raining Skittles Rookie

I am very new to all of this, and have devoured massive amounts of information in the past two weeks. I think my head just might explode from over information before my stomach does from bloating.

I really need to start keeping a journal of my diet and symptoms.

I have my normal annual doctor appointment coming up next week but I've been dairy and gluten-free for the past 2 weeks. Will I get inaccurate results from not having gluten in my diet for 3 weeks prior to testing (assuming I can even convince him to test me)?

Should I begin eating gluten again until after my appointment? I am really not looking forward to that and would love to not have to do it as now that I've been off gluten, I've noticed that even a little exposure gives me horrible symptoms beyond what I experience before.

The pain is much worse, the symptoms last a full 24+ hours, the bloating is beyond bloating and actually makes me look like I've gained 20 pounds in my mid-section so I can't wear my normal pants and I have rolls that weren't there the day before, the flatulence is grotesque beyond description to the point that I seclude myself in the bathroom for hours "taking a bath" and I get mood swings to rival the worst of menopause; temper flares one minute, weepy the next, then I have a hot flash on top of it all and I want to crawl into a secluded corner and cry.

My spouse has no idea what is going on because I find these symptoms gravely embarrassing and feel like there is no excuse for my biting comments and the arguments we've had when I've been exposed.

I've had all these same symptoms my whole life (save for the hot flashes, those are newer due to menopause). But in the past two weeks it is like my symptoms have been given growth hormone shots every time I have a tad bit of gluten. The first accidental exposure was at a friendly bbq where my hamburger was cooked on the same grill that someone had heated a bun. Very little exposure, but enough to send me over the edge and double me over in pain just a couple hours later and on into the night and the next day.

I feel like my own 'testing' has proven to me that I definitely have an issue with gluten even if it's not Celiac Disease. Yet another part of me wants the diagnosis so people don't think I'm gluten-free because it's becoming a fad diet these days and I can tell them "I'm sorry, I can't have that, I have Celiac."

So, back to the question in the subject line. Is it possible for me to get an accurate test result when I've been dairy and gluten-free for 3 weeks at the time of testing?

So sorry for such a long post and thank you in advance for any feedback.


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GFinDC Veteran

If you want the best chance of a reliable result you should start eating gluten again right away. It sounds like that is going to make you pretty miserable though so I am not so sure it is worth it. That's something you have to decide for yourself. The testing is not 100% reliable in the best of cases as false negatives are possible. Your symptoms are not something to be ashamed of, Celiac is a deadly disease if not treated. I'm sure you hubby wants to know what is wrong just as much as you do. And you will need his help to stay gluten-free in your house.

Raining Skittles Rookie

Thanks for your reply GFinDC. I've chosen to not get the testing and just go by the fact that the symptoms match and they have been getting better since I stopped eating gluten. I don't want to risk making myself even more sick that before by purposefully eating gluten.

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      Thanks for the reply. 
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      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
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