I’m trying to figure out what’s going on with me, and I’d appreciate some insight. I went to my allergist with what I thought was an allergic reaction. He said it wasn’t and has run some tests. My tongue has scalloped edges. It looks like my tongue has swollen a bit, and my teeth are leaving indentations in both sides of it. I also have dry mouth and a couple of other things (see list below).
I’m thinking Sjogren’s? Perimenopause? I’m 42, so a little early. Hypothyroidism? I am thin though, and I thought hypothyroidism caused weight gain? Vitamin deficiency?
My allergist ran the following tests which were normal: ANA, CBC, C4, Sed (sedimentation) rate. I'm waiting for one more, but I honestly forgot what it was. In April, I was checked for diabetes (negative) and had my thyroids levels checked (TSH was 1.99. Normal range is 0.44 - 4.37).
I have my yearly check up with my gynecologist in two weeks. But beyond that, where would you go from here? Endocrinologist? Rheumatologist?
My symptoms are below. I know this is a long list, but I included everything I could think of that may help figure this out:
scalloped tongue
dry mouth - some days not noticeable, some days I feel thirsty all day even after I just had a glass of water. Has been going on at least a year.
slight clicking noise in jaw when eating - no pain
occasional single mouth sore (raised blisters) on inner lips near gum line
very heavy period in July. Cycle was 1 week shorter this month, and had pelvic pain first day. Period went from 7 to 8 days and cycle a couple days shorter in the last year.
thin hair - Has been thin for a very long time
rosacea, dry skin on face
chapped lips
eyes dry - perhaps from allergies?
sometimes get film in eye
vaginal dryness - Replens helps (It’s not as bad right now.)
fatigue off and on
irritability off and on
brain fog off and on
neuropathy BUT I have inherited neuropathy and gluten causes nerve problems in me
sugar cravings and irritable if I don’t eat on time (gluten makes this 10X worse)
acne - hormonally linked (Cystic acne went away gluten free)
food intolerances (food reactions cause constipation in me)
sensitive to medications
I appreciate it if you've made it through my long post!!
Sharon
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Sharon
gluten-free March 2011
Failed gluten challenge May 2011
Diagnosed celiac 5/25/11
oh my. these laundry lists of symptoms are always so frustrating, aren't they? you feel like you need to be a detective to sort out what's wrong!
ok, the obvious, any chance you are ingesting gluten by accident? supplements? something with undisclosed ingridients that may be processed?
i know there ar antibody tests for Sjogrens and they can run ANA's that give you an idea if you have some other autoimmune condition but like the celiac antibodies, I think it may be imperfect. Maybe a rheumotologist can give you some direction.
sorry you are not well. We all are so happy when gluten is the problem and other "stuff" seems to creep in.
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TTG >200 (normal <10)
IgA gliadin 24 (normal <11)
IgG gliadin 38 (normal <11)
Endoscopy showed damage that looked like "classic celiac", biopsy showed total villous atrophy
Started gluten-free diet Aug 31, 2010
Only real symptoms are huge weight loss and neuropathy
I would also see your dentist. The scalloped tongue with teeth marks and the jaw issue could mean you are grinding your teeth at night. A night guard should help. I no longer grind my teeth in my sleep but have taught myself over the years to keep my tongue between my teeth because of bad teeth and grinding. I also have ridges in my cheeks for the same reason.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying "I will try again tommorrow" (Mary Anne Radmacher)
celiac 49 years - Misdiagnosed for 45 Blood tested and repeatedly negative Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002 Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis All bold resoved or went into remission with proper diagnosis of Celiac November 2002 Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007
Mother died of celiac related cancer at 56 Twin brother died as a result of autoimmune liver destruction at age 15
Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom
Positive to Soy and Casien also Aug 2007
Gluten Sensitivity Gene Test Aug 2007 HLA-DQB1 Molecular analysis, Allele 1 0303
I have had a scalloped tongue frOm pressing against my teeth for as long as I can remember. I too have been extremely thirsty for the last couple of years. I have been gluten free for 8 weeks and I just checked my tongue and it is still scalloped. Who knows?
Ditto on the dentist. I'm a teeth grinder and that's a symptom. Also, jaw popping is a precursor to TMJ.
You may be showing signs if peri/Pre menopause. Get a Dr. John Lee book. Progesterone cream is miraculous stuff.
You may also gave other issues - autoimmune, etc.
It's never one thing, I've found.
Good luck, and find a way to de-stress and relax. Facial massage is a gift from heaven for TMJ/grinding.
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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. Responsive to iodine withdrawal for DH (see quote, above). Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!
Facial massage is a gift from heaven for TMJ/grinding.
Do you know of any good books or links to how to do this yourself? I know I keep the muscles in my face tense because sometimes on it's own I can feel all the muscles in my forehead relax. Real weird feeling and can't figure out how to do it when I want to as it seems involuntary.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying "I will try again tommorrow" (Mary Anne Radmacher)
celiac 49 years - Misdiagnosed for 45 Blood tested and repeatedly negative Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002 Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis All bold resoved or went into remission with proper diagnosis of Celiac November 2002 Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007
Mother died of celiac related cancer at 56 Twin brother died as a result of autoimmune liver destruction at age 15
Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom
Positive to Soy and Casien also Aug 2007
Gluten Sensitivity Gene Test Aug 2007 HLA-DQB1 Molecular analysis, Allele 1 0303
Do you know of any good books or links to how to do this yourself? I know I keep the muscles in my face tense because sometimes on it's own I can feel all the muscles in my forehead relax. Real weird feeling and can't figure out how to do it when I want to as it seems involuntary.
Unfortunately, no. If you find one let me know!
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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. Responsive to iodine withdrawal for DH (see quote, above). Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!
I had this plus angio lympathic edema of the tongue, lips & soft tissue on mouth after I was given levothyroxine... it started out with scalloped tongue then went from bad to much worse...it took 8 months to get better , my taste buds are still not correct yet...
I have many of the same symptoms as you in your laundry list.....
I get the tongue thing when I have had gluten, a sore or blister and a swollen tongue. its even hard to talk! then the soreness travels down my throat and into my ear canal. It feels like an infection but the doc says theres nothing there.
Thanks everyone! I've had a migraine all weekend off and on, or I would have replied sooner. I just made an appointment with my dentist for next week. I discovered that I do clench my teeth, so tmj is a possibility. I discovered I have lines inside my cheeks and on my bottom inner lip that line up with where my teeth go together.
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Sharon
gluten-free March 2011
Failed gluten challenge May 2011
Diagnosed celiac 5/25/11
