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So Sick, Went To Doc


AVR1962

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TTNOGluten Explorer

AVR,

Your symptoms sound very suspicious for hyperparathyroidism. It is frequently missed by many docs due to fluctuations in your calcium levels and not putting the whole picture together. Do yourself a favor a go on parathyroid.com and read Dr. Norman's site info, he is the world's foremost expert on this. I think it would be worth your time. Best of of luck


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AVR1962 Collaborator

I agree with you Annette, with all the neuro issues you have had the B complex is probably essential. I am hoping that by taking the B complex you can walk more comfortably soon!

I love to walk each day too, and can understand how awful it is not to be able to. Just yesterday I could hardly walk, my diaphragm and belly was so painful. I hobbled about a quarter of the walk I usually go on. My extremities also got extraordinarily cold--like what you are experiencing.

I believe the reason I was feeling this way is that I had just been glutened the day before from another random glutening. I had diarrhea and a migraine that I was finally getting over yesterday.

I think all this was due to my brother coming over to visit. I think he often has crumbs on his clothes he carries in and then sits on my chair I use at the dinner table. He washes his hands like I asked him to, however I watched him and noticed he does it half heartedly; likely a great deal of the gluten goes onto my towel since he fails to use the guest towel and does not really soap up. I didn't realize that earlier and washed and dried with the same towel. Its a crap shoot where the gluten came from. But I have my strong suspicion since this has not been the first time and in fact has become a terrible pattern which often ruins several days for me.

However my brother, while well meaning in some respects, is very self sensitive, protective and forgetful, and not at all sensitive or considerate of the needs of others. I am probably going to have to ask him not to come into the house. I just can't deal with this getting glutened from CC each weekend he comes by!!

Meanwhile, have you tried the co-enzyme B complex? For me it has proven to be far easier to metabolize. I take it on an empty stomach. Without it after a while my heart resumes its old racing pattern. My dentist told me too that with it, my gums way improved vs not taking it. So my belief is that it helps against certain kinds of inflammation, especially taken with nattokinase.

Have you also considered that taking minerals might be essential for you too?? My general mineral absorption is still very poor even after 4 years on this completely gluten free diet. I thus have found that taking mineral supplements is important, including the silica drops in order for my muscles and joints to be strong rather than weak. The silica in particular helps with replacing cartalidge as well as bone. I think too that the minerals help with maintaining nerve health.

Some good news in all of this......urologist did recommend a low oxalate diet but told me not to go over-board. My existing (lodged) stones have not grown. He actually thinks something else is irritating the kidney itself. When I went thru this battle in my 20's it was the chlorination in the water that gave me issues. Here in Germany I am told they don't use chlorine but whatever is being used can still be giving me issues so I have gone to all bottled water.

Urologist says he thinks the tingling in my feet is due to neuropathy issues as a reult of a pinched nerve in my back and has suggested that I get a full back work-up by doc.

Bea, I did try the co-enzyme B complex but felt my nerve complex worked better and am very happy with the results. I don't know if you are havinjg any pins and needles pain between your toes but I find L-carnitine works great for that. It will take about a week for my B commplex to kick in and meantime I hopefully can be seen by the doc for my back.

The sourdough bread sounds yummy Bea!

AVR1962 Collaborator

AVR,

Your symptoms sound very suspicious for hyperparathyroidism. It is frequently missed by many docs due to fluctuations in your calcium levels and not putting the whole picture together. Do yourself a favor a go on parathyroid.com and read Dr. Norman's site info, he is the world's foremost expert on this. I think it would be worth your time. Best of of luck

Yes, this was believed to be what it was initially. I did all kinds of tests.....blood work, 24 hour urine, bone scan, scan on parathyroid. What they concluded was the parathyroid was healthy. Blood work and scan showed no issues. When I went gluten-free my calcium went from hyper to borderline hypo. I have had the parathyroids rechecked, blood work redone, calcium levels checked several times and all is good. Thanks~

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    • trents
      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
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      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
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    • jenniber
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    • trents
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