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Requesting Second Tests

sariesue

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sariesue Explorer
sariesue
Posted

Last year I had an upper endoscopy with 1 biopsy because of some digestive issues I'd been having. My says that the vili looked normal and that nothing was wrong with my gut. Then I was tested for food allergies to gluten and those were negative. My allergist said that I most likely have as gluten intolerance and that if I could try going gluten-free. I went gluten-free for a while and all my symptoms went away. Then I went back to eating gluten to see if it was just a coincidence. Since then my symptoms have come back in full force. I want to get retested for celiac since gluten especially since only one biopsy was taken and he never ran the blood tests. The only problem is that my GI dr refuses to even consider that gluten is the cause of my problems.

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sa1937 Community Regular
sa1937
Posted

Last year I had an upper endoscopy with 1 biopsy because of some digestive issues I'd been having. My says that the vili looked normal and that nothing was wrong with my gut. Then I was tested for food allergies to gluten and those were negative. My allergist said that I most likely have as gluten intolerance and that if I could try going gluten-free. I went gluten-free for a while and all my symptoms went away. Then I went back to eating gluten to see if it was just a coincidence. Since then my symptoms have come back in full force. I want to get retested for celiac since gluten especially since only one biopsy was taken and he never ran the blood tests. The only problem is that my GI dr refuses to even consider that gluten is the cause of my problems.

I do think your body has given you a very clear answer.

That said, are you now eating gluten-free? If so, you'll have to do a gluten challenge before even having a shot at a diagnosis. From what I've read here, that means eating the equivalent of 3 to 4 pieces of bread daily for approx. 3 months. Ouch!

sariesue Explorer
sariesue
Posted
  • Author

I do think your body has given you a very clear answer.

That said, are you now eating gluten-free? If so, you'll have to do a gluten challenge before even having a shot at a diagnosis. From what I've read here, that means eating the equivalent of 3 to 4 pieces of bread daily for approx. 3 months. Ouch!

I haven't really been eating gluten-free recently, more of trying to choose foods that are naturally gluten-free. I'm trying to decide whether or not to get retested before I go completely gluten-free.

sa1937 Community Regular
sa1937
Posted

I haven't really been eating gluten-free recently, more of trying to choose foods that are naturally gluten-free. I'm trying to decide whether or not to get retested before I go completely gluten-free.

If you have been eating foods that are naturally gluten-free, you'll probably have to do the challenge.

sariesue Explorer
sariesue
Posted
  • Author

Yes I do realize that I will probably go back to eating tons of wheat, and I'm ok with that. But, can I request a second battery of tests? I would like to go to a different GI dr since I am generally unhappy with the one I have been seeing since I've waited 2 weeks now to get my b-12 levels back.

Skylark Collaborator
Skylark
Posted

Your allergist may be able to order a celiac panel based on your improvement on a mostly gluten-free diet. You need to eat gluten for three months to make it worth getting tested.

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    • tiffanygosci
      New Celiac Mama in My 30s

      By tiffanygosci · Posted

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    • RMJ
      Outgrow celiac?

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    • knitty kitty
      Outgrow celiac?

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      @Riley., Welcome to the forum, but don't do it!  Don't continue to eat gluten!  The health problems that will come if you continue to eat gluten are not worth it.  Problems may not show up for years, but the constant inflammation and nutritional losses will manifest eventually.  There's many of us oldsters on the forum who wish they'd been diagnosed as early.    Fertility problems, gallbladder removal, diabetes, osteoporosis and mental health challenges are future health issues you are toying with.   To dispel fear, learn more about what you are afraid of.  Be proactive.  Start or join a Celiac group in your area.  Learn about vitamins and nutrition.   Has your mother been checked for Celiac?  It's inherited.  She may be influencing you to eat gluten as a denial of her own symptoms.  Don't let friends and family sway you away from the gluten-free diet.  You know your path.  Stick to it.  Be brave. 
    • knitty kitty
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      By knitty kitty · Posted

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Do talk to your doctor and dietician about checking for nutritional deficiencies.  Most blood tests for the eight B vitamins do not reflect how much is available or stored inside cells.  Blood tests reflect how much is circulating in the blood stream, the transportation system.  Blood levels can be "normal" while a deficiency exists inside cells where the vitamins are actually used.  The best way to see if you're low in B vitamins is to take a B Complex, and additional Thiamine and look for improvement.   Most vitamin supplements contain Thiamine Mononitrate, which is not easily absorbed nor utilized by the body.  Only thirty percent of thiamine mononitrate listed on the label is absorbed, less is actually utilized.  This is because thiamine mononitrate is shelf stable, it won't breakdown sitting on a shelf in the grocery store.  It's so hard to breakdown, our bodies don't absorb it and can't turn it into a form the body can use.  Take Thiamine in the form Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) which the body can utilize much better.  (Ask for an Erythrocyte Transketolace Activity test for Thiamine level.  Though not accurate, this test does better picking up on a thiamine deficiency than a blood test.) Are you keeping your babies on a gluten free diet?  This can prevent genetically susceptible children from developing Celiac Disease.   P. S. Interesting Reading  Thiamine deficiency in pregnancy and lactation: implications and present perspectives https://pmc.ncbi.nlm.nih.gov/articles/PMC10158844/ Descriptive spectrum of thiamine deficiency in pregnancy: A potentially preventable condition https://pubmed.ncbi.nlm.nih.gov/37458305/ B vitamins and their combination could reduce migraine headaches: A randomized double-blind controlled trial https://pmc.ncbi.nlm.nih.gov/articles/PMC9860208/
    • trents
      Outgrow celiac?

      By trents · Posted

      @Riley, on this forum we sometimes get reports from people with similar experiences as you. That is, their celiac disease seems to go into remission. Typically, that doesn't last. At age 18 you are at your physical-biological peek in life where your body is stronger than it will ever be and it is able to fight well against many threats and abuses. As Wheatwacked pointed out, absence of symptoms is not always a reliable indicator that no damage is being done to the body. I was one of those "silent" celiacs with no symptoms, or at least very minor symptoms, whose body was being slowly damaged for many years before the damage became pronounced enough to warrant investigation, leading to a diagnosis. By that time I had suffered significant bone demineralization and now I suffer with back and neck problems. Please, if you choose to continue consuming gluten, which I do not recommend, at least get tested regularly so that you won't get caught in the silent celiac trap down the road like I did. You really do not outgrow celiac disease. It is baked into the genes. Once the genes get triggered, as far as we know, they are turned on for good. Social rejection is something most celiacs struggle with. Being compliant with the gluten free diet places restrictions on what we can eat and where we can eat. Our friends usually try to work with us at first but then it gets to be a drag and we begin to get left out. We often lose some friends in the process but we also find out who really are our true friends. I think the hardest hits come at those times when friends spontaneously say, "Hey, let's go get some burgers and fries" and you know you can't safely do that. One way to cope in these situations is to have some ready made gluten-free meals packed in the fridge that you can take with you on the spot and still join them but eat safely. Most "real" friends will get used to this and so will you. Perhaps this little video will be helpful to you.  
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