Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Doctor Is (Pretty Much) Stumped. Need 2Nd Opinion!
0

8 posts in this topic

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

0

Share this post


Link to post
Share on other sites


Ads by Google:

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!

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites

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!!!

0

Share this post


Link to post
Share on other sites




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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,345
    • Total Posts
      920,488
  • Topics

  • Posts

    • Karen, the iodine test was a test for DH used in the 'olden' days. Iodine would be swabbed onto a spot and then it would be covered with a bandage. If someone had DH the iodined area would break out in lesions. I don't know how but we do know iodine can activate the antibodies. That is why some of us with DH have to avoid iodine in foods until the antibodies have cleared the dermis. OP, if you haven't been tested for celiac you should be and if you have active lesions a biopsy done next to a lesion by a DH knowledgable dermatologist may help in diagnosis.
    • The gluten-free diet (GFD) is the only validated treatment for celiac disease (celiac disease), but despite strict adherence, complete mucosal recovery is rarely ... View the full article
    • What's an " iodine test"?  Haven't heard doctors doing that to diagnose DH.
    • Hello! I've just been given my blood results and told they are highly suggestive of coeliacs but will have to wait till next month to see the gastroenterologist and who knows how much longer for a biopsy. My igA, igG and tissuetrans igA were all over 250 and tissuetrans igG was the only one that was normal. These results don't mean much to me yet but I'm told they are very high. I'm now quite fearful of how much damage I've gone to myself. I've had stomach problems for 25 years (just turned 40) and have often steered clear of too much bread and pasta for how bloated it made me feel but the symptoms were always vague and inconsistent so I kept eating. I had a couple of boats of gastro in the past few months (thanks kids) which I took a lot longer than normal to recover from which looking back may have been related. Then last Friday I had a blowout with wine, cheese, crackers, pizza and chocolate cake. I'm sure I've probably had blowouts like that before but I have never felt so sick before and am still slowly recovering. This is what finally prompted me to go back to my GP after being fobbed off so many times over the years. So I guess my question and my concern is whether there is still  chance of a false positive with levels like this? I worry what else it might be if not coeliac. I'm also worried that I may have done so much damage to myself that I will have several disorders going on! I'm also still recovering from last Friday and wondering when I'm going to feel better. I've stayed off gluten and dairy since my blood result a couple of days ago but feel like I'm allergic to food in general.  Thankyou!!    
    • Here's what the Klondike Bar makers say on the FAQ page of their website (August 2016): Are your products gluten free? Nope. They are not. We have not validated for gluten free. We do not operate allergen-free manufacturing sites, however we do have allergen management programs in all our facilities. The intent of these programs is to avoid unintentional cross-contamination of allergens between products. Our product labels adhere to the FDA’s strict regulations regarding declaration of ingredients and allergens. We do not use the terms “Natural” or “Artificial Flavorings” to hide the existence of any allergens. RECIPES CAN CHANGE. We strongly recommend that allergic consumers refer to ingredient declarations EVERY TIME they purchase processed foods.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,415
    • Most Online
      1,763

    Newest Member
    Ails123
    Joined