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Doctor Is (Pretty Much) Stumped. Need 2Nd Opinion!


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7 replies to this topic

#1 kwylee

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Posted 24 April 2012 - 01:35 PM

I have been strictly gluten free for coming up on 2 years now and overall doing fine. Since last November though, I've experienced a dry mouth to varying degrees, sometimes it ebbs off for a few days but then returns with a vengeance. Water helps somewhat, but most of the time I have to drink more than my stomach can handle to feel any minor relief. My blood glucose, etc., is stellar, so no problems there, and I have tested negative for Sjogren's. It certainly seems like I am producing sufficient saliva but I never really took notice before now, and my eyes are definitely not dry. Other than the rice and some rice or corn flour ingredients, my diet is totally unprocessed, gluten-free/DF/SF, with a normal amount of sea salt and water each day.

This dry mouth seems mild some days and unbearable on others, but I have just noted an increase in the severity whenever I have eaten rice, rice flour or corn flour, persisting for a few days afterward. Potatoes, which I've eaten from the very beginning, do not seem to worsen things. Actually, I just reintroduced additional grains last summer, sparingly at first because they seem to make me tired if I eat too much or too frequently. Rice or not, the dry mouth has been with me to some degree on most days for 5 months.

The PCP most recently tested my vitamin levels (normal)and even considered a thyroid malfunction - although he only tested my overall TSH (1.486), not the individual markers so I'm not sure if I should get him to delve further into that. The only thing he uncovered is a marginally low sodium level, but he told me that was because I was drinking too much water trying to abate the dry mouth, which actually made a modicum of sense. He can only surmise that my body is still going through changes in the absence of gluten, dairy and soy and he's just not sure what to do. At least he's honest and didn't try to intimate this was all in my head (which, technically it is because that's where my mouth is, but I'm splitting hairs here trying to keep it light). In the meantime I guess it's up to me to figure this out on my own, but I'm good at that because I just never give up.

I've read that dry mouth could be a sign of hypothyroid but, like I said, unsure how to proceed if my overall TSH is 1.486, and PCP informs me that's normal. My other thinking is that this is being caused by something in my stomach, but an endoscopy last August, prior to the dry mouth starting, showed everything was fine. Also, I've read here that there are many false negatives for Sjogren's but I'm not 100% sold on that as a diagnosis just yet, especially with stones left unturned. Then, there's always the dreaded brain disorder, but not ready to go there yet either.

So, what better place to start than the best symptom sniffers I know. Any thoughts or ideas on any of this would be greatly appreciated!!
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K Wylee

Gluten Intolerant, Positive test, June 2010
Casein sensitivity, Positive test, June 2010
Reactive to soy, most processed foods & preservatives, June 2010

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#2 mamaw

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Posted 24 April 2012 - 01:53 PM

I got dry mouth so dry for 81/2 months that my teeth stuck to my gum tissue. PlusI had swelling...All because of a change in my thyroid med.. Any change in any of your meds?Inow have enough moisture in my mouth but at times for unknown reasons I get this very dry feeling...My dx's is called angio lymphatic edema...I find that taking a Vit B-12 injection weekly has curbed this dry mouth.. I have no idea why...but its working..
I also would do thyroid testing for Free T-3, Free T-4,total T-3, reverse T-3, I'm hyper & hypo plus Grave's RAI in 07...



Hope you find the source!
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#3 Skylark

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Posted 24 April 2012 - 04:17 PM

Are you on any meds that can cause dry mouth? I had awful problems on lithium.
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#4 kwylee

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Posted 24 April 2012 - 05:27 PM

I'm definitely going to research that angio lymphatic edema issue. And that thyroid issue keeps coming up in my research too. I've left a message for my doctor to have a complete thyroid panel done. If he doesn't agree, I'll just have it done on my own.

Skylark, so interesting that you mention lithium. I'm not on any meds at all except bioidentical hormones. But a number of years ago, prior to me knowing about my gluten intolerance, I had a naturopath test my hair (not sure how accurate that is) and found my lithium levels were so high in my body they were off the charts immeasurable. She actually thought I had been less than truthful when I told her that I have never been depressed nor taken anti-depressants, since she had practiced for 20 years and never seen them that high in someone who hadn't been on anti-depressant meds for an extended time. She finally concluded that my body somehow was getting lithium from some natural source and not being able to expel it. I totally forgot about that until now, but I wonder if my body is somehow detoxing the excess lithium now; she told me back then it wasn't healthy to retain so much of it in the body. I'll have to research that as well.

Thanks!
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K Wylee

Gluten Intolerant, Positive test, June 2010
Casein sensitivity, Positive test, June 2010
Reactive to soy, most processed foods & preservatives, June 2010

#5 pricklypear1971

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Posted 24 April 2012 - 08:18 PM

Yo. My ND put me on estrogen/progesterone bio identicals and I have been "imagining" a dry tongue!!

It never clicked til you mentioned it.

Also, I think it's the estrogen component for me. Progesterone didn't do it to me.

I stopped using it a few days ago but noticed dry tongue alot today. I chalked it up to the unseasonable heat.

But yo!!!
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Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
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Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#6 AVR1962

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Posted 24 April 2012 - 10:19 PM

You said your glucose was fine....did you have a 2 hour glucose test? just a regular blood test for diabetes does not show how glucose is effecting your body. If they did not perform the 2 hour glucose I would highly encourage it. I am prediabtic, had been tested several times for diabetes and all tests were negative until they did the 2 hour glucose.
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Yesterday is not ours to recover but today is ours to win or lose!

Miscarriage, Kidney stones, Anemia, Pneumonia, Migraines, Restless leg, Bone fractures, Blurred/Double vision, Extreme fatigue, Bone & Joint Pain, Thyroid nodule, Celiac diagnosed 2011, Spine and leg bone loss, GERD, Vitamin deficiencies, Malabsorbtion, Neuropathy issues, Ataxia, Raynaud's Syndrome. Currently on diet with limited grain and sugar.

#7 kwylee

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Posted 25 April 2012 - 06:44 AM

Yo. My ND put me on estrogen/progesterone bio identicals and I have been "imagining" a dry tongue!!

It never clicked til you mentioned it.

Also, I think it's the estrogen component for me. Progesterone didn't do it to me.

I stopped using it a few days ago but noticed dry tongue alot today. I chalked it up to the unseasonable heat.

But yo!!!

So I wonder if there is some residual effect to starting or stopping hormones. A compound pharmacist once told me it could take up to 6 months in some people to feel full effects of hormone shifts. Hmmmm.

This hormone connection is interesting and something I had almost dismissed, now not so sure. I've used a topical compounded prescription for a couple years now that supposedly is tailored to my body's hormone need. But last fall I decided to stop the hormone entirely for about 6 weeks to 8 weeks to gauge whether I actually needed it anymore, since going gluten free so many things changed for the better in my body and I hate taking ANYTHING I don't need. I know I didn't have the dry mouth when I stopped applying the cream. But I decided to go back on them when I started feeling a bit run down: even had a strange anxiety attack one day and the dry mouth had already begun too. I did retest for the prescription in January thinking a shift in hormones may be the cause (and perhaps I shouldn't have taken a hiatus from the hormones cold turkey back then), and 4 months into the new prescription, the other symptoms of fatigue and anxiety are gone. The dry mouth persists. But hormones are definitely back on the "possible culprit" list for now since I could have skewed myself up.
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K Wylee

Gluten Intolerant, Positive test, June 2010
Casein sensitivity, Positive test, June 2010
Reactive to soy, most processed foods & preservatives, June 2010

#8 kwylee

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Posted 25 April 2012 - 06:49 AM

You said your glucose was fine....did you have a 2 hour glucose test? just a regular blood test for diabetes does not show how glucose is effecting your body. If they did not perform the 2 hour glucose I would highly encourage it. I am prediabtic, had been tested several times for diabetes and all tests were negative until they did the 2 hour glucose.

No 2 hour glucose test, just the old comprehensive blood panels and metabolic tests. My blood sugar was between 86 and 90 on a few tests in the last few months so the PCP dismissed it. Diabetes runs rampant in my family and I'm going to mention this to the PCP - IF THE GUY EVER CALLS ME BACK!!!!!! I left a message for his office on Monday. This is nuts!
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K Wylee

Gluten Intolerant, Positive test, June 2010
Casein sensitivity, Positive test, June 2010
Reactive to soy, most processed foods & preservatives, June 2010


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