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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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    • Russ H
      HI Nancy, In your first post, you said that you were diagnosed by biopsy and blood test - this is what I was referring to: the blood test is for antibodies that are made during active disease. After a period on a strictly gluten-free diet, the antibodies return to low level. It is a good way of checking for accidental exposure if symptoms persist. If you are reacting to foods that don't contain gluten, you may be reacting to something else. Alternatively, a condition called SIBO is common in people with coeliac disease, where there is an overgrowth of bacteria in the small intestine. This can be tested for with a simple breath test. The main treatment is with a course of antibiotic. Small Intestinal Bacterial Overgrowth (SIBO)
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      Hi Trent, no dairy. Other than good quality butter. I have been lactose free for years. No corn, sugar, even seasonings and spices. I don't eat out. I cook my own food.
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      @nancydrewandtheceliacclue, are you consuming dairy? Not sure if dairy is part of the carnivore diet.
    • nancydrewandtheceliacclue
      Hello Russ! Thank you so much for your reply.  I have not had an antibody test done, ever, relating to gluten. Last year I had an allergy test done via blood draw (as my insurance wouldn't cover the skin test) but this was for pollen and grasses, not food. Even on the blood test I had extremely high levels of reactions to each allergen. Could this seasonal allergy inflammation be contributing to my celiac inflammation? I am so careful, there is no way I could ingest gluten. For example, couple of months ago I tried a cough drop that says it was gluten free. I checked ingredients, it seemed fine. But just taking one of those caused me to have nausea, vomiting, and the same extreme abdominal pain. Have you ever heard of anyone else having symptoms like mine after being diagnosed celiac and strictly gluten free? The last episode I had like this was yesterday, after I ate a certified gluten-free coconut macaroon with a little chocolate on it. I have eaten coconut and chocolate before with no issue,  so I didn't see how I could all of a sudden have such a strong response. 
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