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Leper Messiah

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Leper Messiah Apprentice

Hey guys, looking for a bit of help. Got a few questions which I'll try and be concise with but would appreciate your input:-

Could gluten be stored as fat and therefore hinder any recovery?

Vitamins/minerals - it appears there is a paradox here...for day-to-day living we need nutrition, for repairing ourselves over and above this we surely need a lot more but if our villi are binned then we're not getting enough for day-to-day living nevermind healing so are over the counter vitamins etc swallowed just money down the drain for celiacs? I know you can do B12 sublingually but can you do any others? What about vitamin injections, apart from the fact you are stabbing yourself, would injections be beneficial to recovery until the villi have healed sufficiently that you can obtain your bodies optimum nutrition entirely from food?

York Test - anyone done it and has helped anyone diagnose their celiac? I know they state it is not a reliable indicator of celiac but is it useful evidence for rubbish apathetic docs? Do a lot of people have other sensitivies on top of gluten? Perhaps this is where the yorktest may help, as an indicator at least.

For people recovering - how long until you got your energy back roughly?


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kareng Grand Master

Some nutrition is getting in - just not all or enough. There is usually some parts of the small intestine that are able to take in some nutrition. Thats why I am taking large doses of iron. Some of it has been getting in because it went way up. The idea is to make sure that the part that can digest vitamins has plenty going by to "grab". That said, iron is one that has to go through by itself (no food, coffee,etc 1 hour before & 2 hours after). I had much more energy about 3-4 weeks after I started taking big doses of iron. Hope that made sense.

mushroom Proficient

You Can have B12 injections if you can't do the sublinguals (I can't), and you really need a prescription strength Vitamin D if you are deficient. I am not personally familiar with how ferritin/iron is administered, but if you are low in that I believe the doctors can prescribe stronger doses that are more readily absorbed. Have you had any of your levels tested? I would strongly recommend a good B vitamin complex, and a Multi Mineral complex in addition to any tested deficiencies.

Know nothing about the York Test.

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    • trents
      Yes, it does. And joint pain is another celiac symptom that is now well-recognized. 
    • ThomasA55
      Does my iron loss sound like celiac to you?
    • trents
      Being as how you are largely asymptomatic, I would certainly advise undertaking a gluten challenge in order to get formal testing for celiac disease. We have many forum participants who become violently ill when they undertake a gluten challenge and they therefore can't carry through with it. That doesn't seem to be the case with you. The reason I think it is important for you to get tested is that many or most people who don't have a formal diagnosis find it difficult to be consistent with the gluten-free diet. They find ways to rationalize that their symptoms are due to something other than celiac disease . . . especially when it becomes socially limiting.  The other factor here is by being inconsistent with the gluten free diet, assuming you do have celiac disease, you are likely causing slow, incremental damage to your gut, even though you are largely asymptomatic. It can take years for that damage to get to the point where it results in spinoff health problems. Concerning genetic testing, it can't be used for diagnosis, at least not definitively. Somewhere between 30 and 40% of the general population will have one or both of the two genes known to be associated with the development of active celiac disease. Yet, only about 1% of the general population will develop active celiac disease. But the genetic testing can be used as a rule out for celiac disease if you don't have either gene. But even so, that doesn't eliminate the possibility of having NCGS (Non Celiac Gluten Sensitivity).
    • ThomasA55
    • trents
      Welcome to the celiac.com community, @ThomasA55! Before I give my opinion on your question about whether or not you should undergo a gluten challenge, I would like to know how you react when you get a good dose of gluten? Are you largely asymptomatic or do you experience significant illness such as nausea and diarrhea? You mentioned intermittent joint pain before you began experimenting with a low gluten diet. Anything else?
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