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Went gluten free for 1.5 weeks before my blood test

doenut
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doenut Newbie
doenut
Posted

Hi,

I'm in the process of trying to get to the bottom of my digestive issues.  I've had an ongoing (nearly 30 years) series of problems, beginning with nausea, constipation, painful indigestion when eating bread up to more recently having to go for a number two up to 9 times a day with urgency, wretched flatulence, abdominal discomfort, brain-fog and fatigue.

I tried going gluten free as I felt so bad, and I think it made a bit of an improvement in the week and a half I did it.  I then contacted my GP and she arranged a blood test to diagnose celiac disease (I think it said TTG on the blood sample sheet).  Anyway, now I'm concerned the 1.5 weeks of being gluten-free will impact the results.  I did delay the test slightly and went back on gluten for a week before I gave my sample.  Is this likely to give an inaccurate result?

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trents Grand Master
trents
Posted

Did you mention to your physician that you had been making an effort to eat gluten-free for a week, two weeks before the test but that you had returned to eating gluten a week before the test? Not sure that brief hiatus from gluten would totally invalidate the test but it might have some mitigating effect on the actual scores. I would bring that up with the physician if the tests are not definitive.

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doenut Newbie
doenut
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Posted

I didn't mention it at the time, but once the results come I will.

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Scott Adams Grand Master
Scott Adams
Posted

It's difficult to say for sure, but what typically happens is that the antibodies they are trying to measure drop on a daily basis as soon as you go gluten-free. Normally you need to eat gluten daily until you finish all tests for the results to be accurate. All you can do now is wait and see. 

Did you feel any better on a gluten-free diet?

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doenut Newbie
doenut
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Posted

I did start to feel a bit better, less frequency going to the bathroom and less discomfort.  I think my energy was picking up too, but it wasn't very long that I was gluten-free so it may have just been a coincidence.  Right now I'm so foggy headed I can't really remember properly.

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DJFL77I Experienced
DJFL77I
Posted

1.5 weeks is not going to make any difference

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    • trents
      Pretty desperate for some guidance

      By trents · Posted

      Welcome to the forum, @Pua! Yes, many, many forum participants have been in this same boat. That is, suspecting celiac disease and testing the waters by going gluten free but then realizing they undermined the ability to bet tested for it by doing so. It's a very common mistake??? but a completely understandable decision making sequence. The symptoms you describe in both you and your son are strongly suggestive of celiac disease or at least NCGS (Non Celiac Gluten Sensitivity). It is also true that a high percentage of those with celiac disease (one small study found it to be 50%) react to CMP (Cow's Milk Protein) like they do the gluten in wheat/barley/rye. And about 10% of celiacs also cross react to the protein in oats (avenin).  Although it doesn't seem prudent at this point to seek testing for celiac disease since it would require you and your son to be eating regular amounts of gluten for weeks leading up to the test, it might be helpful to seek genetic testing to see if you and he have the genetic potential to develop celiac disease. If you don't have any of the celiac genes, you should look at NCGS instead. Genetic testing doesn't require a "gluten challenge". Are you nursing your son? You might look into a hypo allergenic baby formula called Neutrogena.
    • Scott Adams
      Pretty desperate for some guidance

      By Scott Adams · Posted

      Aloha! It sounds like you've been through so much with your own health and now your son's too—I completely understand why you're questioning celiac for all of you. Your symptoms and family history really do line up with what many experience with celiac disease. It’s common for it to be missed by doctors who end up treating the symptoms separately, as you described. For toddlers, celiac can definitely show up as constipation, stomach pain, poor growth, rashes, and recurring ear infections, just like your son is experiencing. In little ones, the digestive system can be especially sensitive, and gluten can trigger a wide range of symptoms that often go undiagnosed. Since you’ve already cut gluten and are seeing improvements, that’s a pretty strong indicator that gluten may be the underlying cause for both of you. Some families do choose to stay gluten-free without testing, especially when the gluten challenge feels too risky or uncomfortable. As for progression, yes, celiac can worsen over time if untreated, which might explain why your dad’s health is more severe. It can also look different from person to person, so it’s not unusual for you and your dad to have varying symptoms. If you do want to explore testing without a full gluten challenge, you might consider genetic testing (HLA-DQ2 and HLA-DQ8), which can show if you or your son are at risk, though it won’t confirm celiac on its own. If you did want to confirm this with blood screening unfortunately you would need to eat lots of gluten daily for 6-8 weeks leading up to the test.
    • Scott Adams
      Not sure if this is Celiac or just a gluten-free intolerance

      By Scott Adams · Posted

      I just want to add that many celiacs do not have any obvious symptoms, but still have the same health risks if they continue to eat gluten. Unless all of her first-degree relatives, including yourself, are screened for celiac disease, there is not way to be sure that other relatives don't also have it (some studies have shown that up to 44% of first degree relatives also have celiac disease). This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
    • Scott Adams
      Question

      By Scott Adams · Posted

      I don't know of any that are certified gluten-free.
    • Pua
      Pretty desperate for some guidance

      By Pua · Posted

      Aloha, could use a little insight from those who are familiar with celiac. I’m starting to think my dad , me and my son all have it As a kid I had severe stomach cramps and constipation. I would sleep on the bathroom floor all night often and the pain waves would end in diarrhea. I vomited often. Easy bruises, vitamin d&b12 deficiencies, asthma,  iron deficient anemia, chronic sickness, fluid in ears, hearing loss, adhd, depression, and as I got older extremely heavy periods, mood swings, and severe allergies where doctors would prescribe me epipens saying  I had a reaction but allergists would say I’m not allergic to anything. I’ve been so sick my whole life until I randomly decided to cut out our gluten because I was so tired of doctors. Felt great and all my symptoms started going away.    when my son was born people started making us meals and I ate gluten again and was breastfeeding. My son was always projectile vomiting, colic, acid reflux, screaming all night and day and doctors did what they did with me and treated symptoms separately. He’s 14 months now and always severely constipated, has stomach pains, poor sleeping, always had red eyes, loses weight, fluid in ears, rashes, 4 ear infections in 2 months. we don’t feed him dairy but started giving gluten when he was about 11mo old.  doctors just say to give him formula still , MiraLAX, acid reflux meds, no dairy and I feel like I’m symptom chasing just like I was my whole life.  has anyone had experience with toddlers having celiac? I didn’t do the blood test because poor guy has been under so much testing and er visits and I stopped giving him gluten 2 weeks ago so I didn’t want to do it for a negative test.  I also had all the same issues he’s having when I was a baby    I don’t want to eat gluten for long periods just for a positive test but has anyone been in this boat? Does celiac get progressive because I believe my dad has it too and his health is even worse than mine  mahalo       
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