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General Advice/symptoms


flutterby

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flutterby Apprentice

Okay, so I


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babysteps Contributor

I encourage you (if you haven't already) to search this forum for "blood test" - there is a wide range of opinion!

Go ahead and gather information, educate yourself, and come to a decision that is right for you, one you can be confident in.

My viewpoint (just one person, not a medical professional) - unless it is critical to your future treatment in some way (meaning what insurance may or may not cover, or whatever other bureaucratic impact there might be), I would follow your doctor's orders, pay attention to your body, and not worry about the blood test at this time. Note that I *am* biased on this, as my blood test was negative but dietary response very strong, so the blood test didn't really 'do' anything for me.

Fair warning, if you are gluten-free then taking the antibody blood test later will likely show a "negative" (non-celiac) result, since if you aren't eating gluten you relatively quickly lose the antibodies (opinions differ, but a few weeks to a few months seems to be the range for how quickly the antibodies go away).

You might consider also avoiding barley and rye (in addition to the wheat) - for me personally, I seem to have an even stronger reaction to barley than to wheat.

Good luck, hope you feel better quickly!

flutterby Apprentice

Hi! Thanks so much for replying! I

jhow32000 Rookie

Oh boy. Not sure what your doc's line of reasoning is because is she/he were going to order blood tests they would do it while you are on gluten to see if you have any antibodies related to celiac disease in your blood. Asking someone to go off gluten and then back on it is not nice, because it is painful to do if you really do have celiac disease. However, some docs know that the testing is so unreliable at times that they will just tell you to go gluten-free/dairy free and see if it improves your health. That really, IMO, the best indicator. If your resources are limited I suggest googling 'SCD' reading on the main website and following that diet for a month or two. You'll notice great improvement in your health and when this happens you need to proceed for another 6-9 months. I personally wouldn't worry about pursuing a diagnosis unless you are worried about treated other health problems related to the celiac disease. I personally have never had any help from a doctor at all and don't rely on them for much besides sugery and emergencies.

  • 1 month later...
flutterby Apprentice

Hey guys--thanks for all the advice. As an update I

purple Community Regular
Okay, so I

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    • trents
      Welcome to the celiac.com communiuty, @Matthias! Yes, we have been aware that this can be an issue with mushrooms but as long as they are rinsed thoroughly it should not be a problem since the mushrooms don't actually incorporate the gluten into their cellular structure. For the same reason, one needs to be careful when buying aged cheeses and products containing yeast because of the fact that they are sometimes cultured on gluten-containing substrate.
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      The one kind of food I had been buying and eating without any worry for hidden gluten were unprocessed veggies. Well, yesterday I discovered yet another pitfall: cultivated mushrooms. I tried some new ones, Shimeji to be precise (used in many asian soup and rice dishes). Later, at home, I was taking a closer look at the product: the mushrooms were growing from a visible layer of shredded cereals that had not been removed. After a quick web research I learned that these mushrooms are commonly cultivated on a cereal-based medium like wheat bran. I hope that info his helpful to someone.
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      I might suggest you consider buckwheat groats. https://www.amazon.com/Anthonys-Organic-Hulled-Buckwheat-Groats/dp/B0D15QDVW7/ref=sr_1_4_pp?crid=GOFG11A8ZUMU&dib=eyJ2IjoiMSJ9.bk-hCrXgLpHqKS8QJnfKJLKbKzm2BS9tIFv3P9HjJ5swL1-02C3V819UZ845_kAwnxTUM8Qa69hKl0DfHAucO827k_rh7ZclIOPtAA9KjvEEYtaeUV06FJQyCoi5dwcfXRt8dx3cJ6ctEn2VIPaaFd0nOye2TkASgSRtdtKgvXEEXknFVYURBjXen1Nc7EtAlJyJbU8EhB89ElCGFPRavEQkTFHv9V2Zh1EMAPRno7UajBpLCQ-1JfC5jKUyzfgsf7jN5L6yfZSgjhnwEbg6KKwWrKeghga8W_CAhEEw9N0.eDBrhYWsjgEFud6ZE03iun0-AEaGfNS1q4ILLjZz7Fs&dib_tag=se&keywords=buckwheat%2Bgroats&qid=1769980587&s=grocery&sprefix=buchwheat%2Bgroats%2Cgrocery%2C249&sr=1-4&th=1 Takes about 10 minutes to cook. Incidentally, I don't like quinoa either. Reminds me and smells to me like wet grass seed. When its not washed before cooking it makes me ill because of saponins in the seed coat. Yes, it can be difficult to get much dietary calcium without dairy. But in many cases, it's not the amount of calcium in the diet that is the problem but the poor uptake of it. And too much calcium supplementation can interfere with the absorption of vitamins and minerals in general because it raises gut pH.
    • Scott Adams
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