Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

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

kwylee

By kwylee
in Coping with Celiac Disease

Recommended Posts

kwylee Apprentice
kwylee
Posted

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

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


mamaw Community Regular
mamaw
Posted

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!

Skylark Collaborator
Skylark
Posted

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

kwylee Apprentice
kwylee
Posted
  • Author

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!

pricklypear1971 Community Regular
pricklypear1971
Posted

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!!!

AVR1962 Collaborator
AVR1962
Posted

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.

kwylee Apprentice
kwylee
Posted
  • Author

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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


kwylee Apprentice
kwylee
Posted
  • Author

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!

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,128
    • Most Online (within 30 mins)
      7,748
    Steve715
    Newest Member
    Steve715
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • knitty kitty
      My only proof

      By knitty kitty · Posted

      Just wanted to add that checking B12 and Vitamin D only is not going to give an accurate picture of vitamin deficiencies.   B12 Cobalamine needs the seven other B vitamins to work properly.   You can have vitamin deficiency symptoms before the B12 blood level changes to show deficiency.  You can have "normal" B12, but have deficiencies in other B vitamins like Thiamine and Niacin, for which there are no accurate tests. Take a B Complex supplement with all the B vitamins.  Take additional Thiamine B 1 in the form Benfotiamine which has been shown to promote intestinal healing.  Thiamine Mononitrate found in most vitamin supplements is not easy for the body to utilize.  What makes thiamine mononitrate not break down on the shelf also makes it hard for the body to absorb and utilize.  Thiamine and Niacin B 3 deficiency symptoms include anxiety, depression and irritability.  The brain uses more Thiamine than other organs.  Take the B Complex and Thiamine in the form Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) and look for health improvements in the following weeks.
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      Hello, @rei.b, Ehlers Danlos syndrome and Celiac Disease can occur together in genetically predisposed individuals.  Losing ones gallbladder is common with celiac disease. I'm glad Naltrexone is helping with your pain.  Naltrexone is known to suppress tTg IgA and tTg IgG production, so it's not surprising that only your DGP IgG and DGP IgA are high.   Have you tried the Autoimmune Protocol diet designed by Dr. Sarah Ballantyne, a Celiac herself?  The AIP diet helps lower inflammation and promotes intestinal healing.   The AIP diet is a Paleo diet that eliminates foods that can cause intestinal inflammation until you heal on the inside, then more foods can be added back in.  The low histamine AIP diet will help reduce inflammation further.   Histamine is released as part of the immune response in celiac disease.  Foods also contain various amounts of histamine or provoke histamine release.  Lowering the amount of histamine from foods helps.  The body, with help from B vitamins, can clear histamine, but if more histamine is consumed than can be cleared, you can stay in an inflammatory state for a long time. Cutting out high histamine foods is beneficial.  Omit night shades which contain alkaloids that add to leaky gut syndrome found with celiac disease.  Night shades include tomatoes, peppers including bell peppers, potatoes and eggplants.  Processed foods like sausages and gluten-free processed products are high in histamines.  All Grains are removed from the diet because they are inflammatory and provoke histamine release. Blood tests for deficiencies in B vitamins are notoriously inaccurate.  You can have vitamin deficiency symptoms before blood levels show a deficiency.  Blood levels do not accurately measure the quantity of B vitamins stored inside the cells where they are utilized.  The brain will order stored vitamins to be released from organs into the blood stream to keep the brain and heart supplied while deficiency occurs inside organs, like the gallbladder.  Gall bladder dysfunction is caused by a deficiency in Thiamine Vitamin B 1 and other B vitamins.   The eight essential B vitamins are water soluble and easily lost with diarrhea and constipation, and the malabsorption and inflammation that occurs with celiac disease.  Because they are water soluble, the body can easily excrete any excess B vitamins in urine.  The best way to see if you are deficient is to take a B Complex and Thiamine in the form Benfotiamine and look for health improvements in the following weeks.  Most B Complex supplements contain Thiamine Mononitrate which is not bioavailable.  The body has a difficult time utilizing thiamine mononitrate because it doesn't break down easily.  Benfotiamine has been shown to promote intestinal healing.   Remember your intestines are in a damaged, permeable state.  Treat them tenderly, like you would a baby until they heal.  You wouldn't feed a baby spicy bell peppers and hard to digest corn and nuts.  Change your diet so your intestines can heal.   I use a combination of B12 Cobalamine, B 6 Pyridoxine, and B1 Benfotiamine for pain.  These three B vitamins have analgesic properties.  They relieve pain better than other otc pain relievers. 
    • Mari
      My only proof

      By Mari · Posted

    • trents
      High DGP-A with normal IGA

      By trents · Posted

      Sorry, I think I got you mixed up with another poster.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I hadn't been eating gluten free before having the antibody test done. I started eating gluten free after having the test done because the gastro PA told me to eat gluten-free for 6 months. I'm now 3 months in.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.