Desperate! Need Answer Fast.....

[Canadian Karen]

I can't get into delphi to check their list and www.glutenfreedrugs.com doesn't list this so I need to know:

is Orajel Maximum Strength Liquid gluten free?

I have a toothache that is so bad I am THIS CLOSE to ripping my face off!!!!

Thanks!

Karen

[moving on]

Karen, this is the only one listed and it is gluten-free. I know it isn't what you want. Wish I could be of more help. Looked on the website (Orajel) and couldn't find anything there.

Orajel Mouth Sore Medicine(Del Pharmaceuticals)(800-952-5080)(vp=1/10/05) gluten-free

[Canadian Karen]

Thanks, Moving On..... I am torn whether or not to use it, I am in so much pain and hubby went and got this. He got the liquid because he thought the gels are more likely to have gluten in them...... I have had this all day long and I am about to lose my mind! Everything was fine yesterday. Woke up this morning, and the whole right side of my mouth including jaw is killing me - it feels like everytime I move my jaw around, it is going to lock......and my teeth near the back are so sensitive I can't even bite down..

Karen

[celiac3270]

Moving on, did you get that from Delphi or elsewhere? If you found it on a different website, then I'll see when Delphi confirmed it if they did.....you know

Sorry about that, Karen.....sounds painful Hey, speaking of which, I couldn't find a good emoction for pain.....we should get a smilie on pain--with how often we go through it lol.....

[KaitiUSA]

celiac3270...I saw that one on the Delphi forums list so I think she got it from there.

[lovegrov]

1-800-952-5080 is the company number.

Hoep you've been able to get to the dentist by now, though. If you have an infection it's nothing to fool around with.

richard

[Canadian Karen]

I just heard back from the company that indeed it is gluten free. Thanks for the phone number, Richard.

The thing is, NOW IT IS GONE! The same thing has happened before. I get these things that I would best describe as a "flare up". When it happens, my joints ache, I get a really bad pain the the middle of my back, like a burning feeling, I get the tingling, electrical feeling going through my neck down my arms, my jaw kind of like locks. Yesterday, I had a flare-up and my jaw got really sore, the then the pain started to radiate onto the teeth. It was awful! Now, today, basically it is gone.

What would you think these flare ups would be?

Karen

[tarnalberry]

while I don't know what it would likely be, what tests have your doctor's run for this? if it's happened more than once, I would highly encourage you to 1) write down everything you experienced, including length of time, intensity of pain, frequency, and so forth, 2) make an appointment with your doctor ASAP, getting a referral to a specialist (though I'm not 100% sure which the best option would be, specialist wise), and 3) make a note to get in IMMEDIATELY the next time this happens if they aren't able to find out what happened after the fact.

I hope it doesn't happen again!

[Canadian Karen]

Hi Tiffany,

I have already done that. I wrote down exactly what happens when I have a "flare". I took it to the dr. and she says that it is "stress and anxiety". Nope, sorry, I don't buy that......

Here is exactly what I wrote down and showed her:

Dear Dr. ______:

It is really hard for me to explain the feelings when I have a "flare" so I thought I would write them down as they happened and then put it down on paper so you can get a better understanding and also so I would not forget to mention anything.

Starts with:

- "locking" of shoulds/neck in the centre of my back.

- I see "flashing light" in the corner of my eyes.

- I see "flashes of things" i.e. something that looks like a bug crawling across the floor but there is nothing there.

- My eyes puff out and I get dry skin patches on my face.

- I start to lose hair.

- Numbness, coldness in fingers

- Burning/tingling of lips and tongue and funny taste in my mouth.

- Numb feeling on face (cheeks, around the mouth)

- This flare, I actually woke up through the night with a stiff jaw, and was stiff for a few days (kind of like locking)

- A "shooting feeling down my arms and legs.

- Abdominal pain, unbelievable gas, feels like poison going through my whole body

- Tenderness, rawness under breasts, reaching to the back area

- I feel unstable, upset, crying, jumpy, nervous.

Please tell me I am not losing my mind. I have been ignoring these "flares" for far too long now, and they are intesifying both in quantity of flares and also they are stronger each time they come now.

I have tried to keep track of the flare and have not been able to find any correlation between the flares and what I have eaten or when I have my periods. I have not been able to find a pattern.

I hope this helps in understanding.

END OF LETTER..............................................................................

That is exactly what I have showed my dr. and she basically writes it off as stress/anxiety. I have a strong hunch that it is some kind of nerve damage done by the celiac disease and have suggested to her that I need to see a neurologist, but she doesn't think so....... Still trying to push for that though.....

Karen

[cdford]

Oh, Karen...welcome to my world. With my status, that is not what you want to hear. I have very similar flare-ups and have for years. They seem to be more associated with my FMS and my immune system as a whole than with a gluten attack, though I do get them after getting glutened. Have you considered that it is sinus season and that could cause an immune system flare and even the toothache? For years I went to the dentist a couple of times a year almost in tears with a toothache that turned out to be my sinuses filled up and pressing against the roots of my teeth. It also triggered the muscle spasms (which can also be the cause of those odd flashy things with your eyes) and tenderness everywhere there was a lymph node (the neck, under the breast area, and in the lower abdominals fall into this category). The grunge draining into my digestive tract would do similar ugly things there.

Wouldn't it be nice if it was something as simple as getting spring allergies under control? I say that as though any immune thing is simple with us.

[moving on]

Karen, I sure hope you are able to get to the bottom of this. These attacks have to be scary. I did get the information from Delph and I believe I added verified by phone 1/10/95. You might want to call them ask about the product you have today and post an update.

It sounds as if you do not have a very sympathetic doctor. I've changed doctors for just that reason but don't know how well the new one will listen when I have the next problem.

I hope you have seen the end of these "flares".

[celiac3270]

At least it's gluten-free ...and maybe just try going to another doctor for it if your current one isn't willing to look for what might be causing these symptoms.

[judy05]

Karen,

I know that you have been taking a new medication for a while, were these flares happening before you started on it? I would ask the pharmacist to copy the side effects listed on this medication in his PDR. Another thing I was thinking was a possible migraine attack, without the headache. I used to get the lights flashing in the corner of my eye and also seeing spots, mine were black, white, or gray. Some times your vision gets distorted too, it is very scary. Now when I get the "aura" as it is called I have medication to take to shorten the spells and make them less severe. Mine used to occur around" my time of the month", as my mother used to call it. I also have had the locking of the neck and shoulders and the pain down the back. I used to get it a lot when going to night school, it always happened when I got out of my warm car into the cool night air. I believe these were muscle spasms, I've had a lot of those too. The numbness, burning around your face could be a lot of things, have you had your blood sugar checked lately?

I agree with the other poster that it could be something as simple as a sinus infection, it is that time of the year.

My mother suffered for years with trigeminal neuralgia, when the seasons changed she would suffer terrible pain on the right side of her face, she couldn't wash her face, brush her teeth, eat or drink until her jaw stopped hurting. They treated her

with seizure medications and I also had to give her Darvocet when the pain became unbearable.

I don't blame you for feeling scared and nervous, I would be too. In the meantime

I would advise you to treat the symptoms, maybe ice or hot packs, pain medications, etc and try to see a Neurologist as soon as possible. Celiac can do nerve damage and I think a neurologist could help you the most. If I can help you in anyway please let me know!

Also a lot of the symptoms could be peripheral neuropathy. It happens a lot in Diabetics and Celiacs, yes,I have had that too, you name it I've had it. The nerves

of the brain and spinal cord aren't affected but the peripheral "outside" nerves are.

Do a google for more info.

I hope you soon find answers, I will say a little prayer for you tonight!

[Guest gillian502]

I would definitley agree this sounds like migraines. It certainly doesn't sound like any type of anxiety related reaction I've ever heard of! Your doctor said that because she's reaching for an answer and doesn't have one...and doctors hate it when that happens! Feel better, and explore the possibility of the migraines.

[plantime]

Have you had your ears looked at? I know it seems like reaching, but last summer, I had the same symptoms, and my doc wrote them off as stress. She gave me Lexapro for it. Several months and a different doc later, it was discovered that I had an inner ear infection. It took three rounds of antibiotics, each stronger than the last, to clear it up. Now, because it went on for so long, I get pain in the right ear whenever the weather changes.

[jknnej]

A couple of nights ago I awoke at 2am and couldn't open my mouth. I forced it and my jaw popped so loud it woke my husband up. I was freaking out. I always knew I had TMJ but this was different. Luckily I have a mouthpiece to wear that helps, but I thought I was going to have to go to the hospital. It's very scary. The pain shot straight through my head and gave me an instant headache. the doctor says it's from stress....who knows? I just know that it isn't any fun.

[Canadian Karen]

That sounds just like me!

What is TMJ?

Karen

[Generic]

Have you checked into Multiple Schlerosis (sp) (people who have celiac are more likely to get it) or fibromyalgia? When you are a celiac and you eat gluten you get nerve damage, since your body attacks itself.

TMJ is where you have problems with clenching your jaw and it causes severe pain.

[Canadian Karen]

I have a terrible habit of clenching my teeth, and I don't even know I am doing it until suddenly I realize it and stop. Also, I have a terrible habit of "rubbing" or "grinding" my teeth by moving my lower jaw side to side. I do it subconsiously, even now, while I am typing this, I notice myself doing it......

I have discussed with my dr. the possibility of MS, and she kind of fluffed it off. I am still trying to get a referral to see a neurologist though......

Karen

[Judyin Philly]

I just heard back from the company that indeed it is gluten free. Thanks for the phone number, Richard.

The thing is, NOW IT IS GONE! The same thing has happened before. I get these things that I would best describe as a "flare up". When it happens, my joints ache, I get a really bad pain the the middle of my back, like a burning feeling, I get the tingling, electrical feeling going through my neck down my arms, my jaw kind of like locks. Yesterday, I had a flare-up and my jaw got really sore, the then the pain started to radiate onto the teeth. It was awful! Now, today, basically it is gone.

What would you think these flare ups would be?

Karen

OLD POST KAREN

Hi

wouldn't you know it's you I find when doing a 'dental' search.

I can't seem to find the thread where people were talking about the products dentist use that are ok for us.

I have to get there...Rachel's post made me realize this may be part of my problems now....

I have to go in for a cleaning...and know they are so great but DON'T WANT ANY MISTAKES

I have a jaw and tooth ache but there are no teeth on the top and one on the bottom...Long story i'll spare you but.....before hip surgery old dentist MISSED a absess and new dentist found it which lead to 3 root canals....before I could do surgery and it was scheduled and had to be pushed back for 3 weeks.

What questions do I ask the dentist to ck????

I found on the forum that the power in the gloves has gluten..my eye got blood red after she took off her gloves..thought that it was latex allergy.

i'm spinning now and fogged...ate jim's chilli last nite with gluten instead of my gluten-free....good god.

judy in philly

[Canadian Karen]

Hi Judy,

Don't worry about conjuring up old posts and posting new replies. Happens all the time, not to worry. People get used to looking at dates.......

I think you should try that new pineapple juice suggestion from another thread. See if it helps to de-glutenize you. You can be our guinea pig!!!

Hugs.

Karen

[Judyin Philly]

I have a terrible habit of clenching my teeth, and I don't even know I am doing it until suddenly I realize it and stop. Karen

my chriropractor told me when i was doing this to--

"drop your lower jaw and keep lips just slighly together and breath deeply in and out 4 times slowly"

I tried it and broke the 'habit' i seemed to haved developed after have 2 teeth pulled.

see, back to teeth again.

judy

[jerseyangel]

I clench my teeth both in my sleep, and when awake (it's called bruxism). I sometimes would wake up, and my bottom teeth would be pressing so hard against my upper ones that I was afraid I would cause them to break. My GP sent me to an ENT and he Dx me with TMJ disfunction--after the exam and hearing my history, he said I was a classic case. The ENT told me to see the dentist and have a bite guard made. I've been using it now at night for about 2 1/2 years--if I skip too many nights, I wake up with a dull ache at the base of my skull and a tired feeling in my lower jaw.

[Becky6]

My tooth did that for a while on and off and I shrugged it off until It was so bad I was going to die! It had gotten really infected by then and needed to be pulled! I would suggest getting it looked at to be safe. Good luck!!

[Canadian Karen]

I clench my teeth both in my sleep, and when awake (it's called bruxism). I sometimes would wake up, and my bottom teeth would be pressing so hard against my upper ones that I was afraid I would cause them to break. My GP sent me to an ENT and he Dx me with TMJ disfunction--after the exam and hearing my history, he said I was a classic case. The ENT told me to see the dentist and have a bite guard made. I've been using it now at night for about 2 1/2 years--if I skip too many nights, I wake up with a dull ache at the base of my skull and a tired feeling in my lower jaw.

That is EXACTLY how it feels in the morning when I wake up!!!

I will have to google up TMJ dysfunction to see what it is.....

Thanks!

Karen