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

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

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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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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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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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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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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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    • Based on the information you have posted today, the most likely probable reason for your being ill is that you are getting glutened!  Here is a biggie....does your hubby brush his teeth prior to kissing you?  Seriously, it can happen, but going out to eat a lot.....that is just as bad!  
    • I got glutened last summer.  Heck, I do not even know what glutened me, but I suspect two products that my gluten-free hubby never consumed (he is my canary).  My symptoms were so different from when I was diagnosed (just had anemia then).  My GI thought I had SIBO or something else, but I asked for a celiac panel.  Yep, I had been Glutened!  Took me three months to recover and another three to regain lost weight.  Yeah, I picked up another health issue on the way (hives, rashes, swelling, itching, ab pain, vomiting, and fainting.)   I did not eat out for one year!  Only this summer, I did.  Was it worth the risk?  You bet!  Three weeks in Europe.  Fortunately,  7 days was on a cruise and Celebrity did a great job.  Italy was so celiac-savvy and I did my research and found places recommended by other celiacs in Spain, France and Poland.  If not, we bought cold food at the market and had a picnic.   I am home.  Will I eat out?  Probably not.  I have a busy Fall ahead of me (High School....football, marching band, volunteer positions, house projects, and work).  I can not afford to be sick.   Ah, I will eat out this Thanksgiving break.  My favorite restaurant is 100% gluten free in Tucson, AZ.   Maybe I will discover another gluten-free restaurant closer to home! 
    • I do est out occasionally - but not indiscriminately.  I am careful to choose places that under stand gluten free.  And places that the food is naturally gluten-free, helps, too.  Celiacs can't just eat something that should be gluten-free and hope it is.  We have to use some common sense and ask questions.  
    • You are right that the next step is an endoscopy, which still is the "gold standard" in diagnosing celiac disease.   However, for various reasons the endoscopy is not done because financial contraints  or long wait times (up to a year!), or too ill to proceed.   You have two positives.  You only need one positive to move forward.    The TTg tests  do not need to be positive for a diagnosis (which requires a positive on an antibodies test which you had and an endoscopy).  My TTg tests were negative and I only had a positive on the DGP IGA, yet biopsies revealed a Marsh Stage IIIB (moderate to severe damage. http://www.cureceliacdisease.org/screening/ Unless your PCP is a celiac expert (unlikely), I would insist on a GI consult.   Please find one who is celiac-savvy.   keep eating gluten daily until all testing is complete (biopsies done).  You never know if lab results are going to get lost.  Besides any celiac testing requires the patient to be on a gluten diet.  In the meantime, keep on researching.  Only YOU can be your best health advocate!  
    • I'm having some issues, that I didn't really even know I was having until the blood work showed them. Retracing my steps, I eat very strictly gluten free at home. I eat too much dairy (which is not only a problem for many celiacs, it is also not an anti-inflammatory). The husband and I have eaten out a lot over the last three years of my diagnosis. I guess I have not been overly cautious as I should have been, which I'm guessing could be my problems (although I am seeing the GI doctor tomorrow). So, I'm wondering if anyone here no longer eats out ever? Were you eating out and realized you were still doing yourself damage? 
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