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General Advice/symptoms

flutterby

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flutterby Apprentice
flutterby
Posted

Okay, so I

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babysteps Contributor
babysteps
Posted

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
flutterby
Posted
  • Author

Hi! Thanks so much for replying! I

jhow32000 Rookie
jhow32000
Posted

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
flutterby
Posted
  • Author

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

purple Community Regular
purple
Posted
Okay, so I

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    • Jess270
      Bitters for digestion?

      By Jess270 · Posted

      This sounds to me like histamine intolerance. Some foods have more or less histamine. processed or aged meats, fermented food like yoghurt or kimchi and bread (yeast), spinach, eggplant and mushroom are high in histamine. Other foods like tomatoes are histamine liberators, they encourage your mast cells to release histamine, which can also trigger the reactions you describe, flu like symptoms, joint pain, urinary tract irritation, rash, stomach upset, nausea, diarrhoea & fatigue. I had liver pain like you describe, as part of the intolerance is usually a sluggish liver that makes processing all the histamine difficult. There are multiple possible root causes of histamine intolerance, usually it’s a symptom of something else. In my case, leaky gut (damaged gut wall)caused by undiagnosed celiac, but for others it’s leaky gut caused by other things like dysbiosis. Some people also experience histamine intolerance due to mould exposure or low levels of DAO (the enzyme that breaks down histamine in the gut). I’d try a low histamine diet & if that doesn’t improve symptoms fully, try low oxalate too. As others have suggested, supplements like vitamin d, b, l-glutamine to support a healthy gut & a good liver support supplement too. If you’re in a histamine flare take vitamin c to bowel tolerance & your symptoms will calm down (avoid if you find you have oxalate intolerance though). Best of luck 
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      @GeoPeanut, milk is one of the better sources of iodine. Iodine is known to exacerbate dermatitis herpetiformis. Many people find that a low iodine diet helps them avoid dermatitis herpetiformis outbreaks. So, maybe the fact that you have limited your dairy intake of late is helping with that.
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