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Hi all,

I was just diagnosed about a week or two ago. While my stomach cramps I think are already getting a little better, my nausea is getting worse! I am also getting really shaky. I keep dropping things and falling, etc. About a year ago the doctors kept treating me for vertigo (I hadn't thought to connect the frequent bathroom trips and the falling on my face yet). I'm so clumsy from the dizziness and nausea, it's embarassing. :wacko: It's hard to explain the link between my aching gut and my spinning head to me friends and family. Is there anything out there that will help? I've tried over the counter nausea stuff as well as TummyTea, but these don't really help much. I'm having trouble eating. Please help!

Thanks!

Heather

P.S.

I'm not pregnant (I only say this because every new doctor I went to insisted I take another pregnancy test).

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A week or two isn't enopugh time to hardly even begin the healing if you've been really sick. I was so ill I ended up missing 10 weeks of work and even then I tried going back too soon. Some people also have withdrawal symptoms when they stop eating gluten.

Some people say papaya juice soothes their stomachs. Also, eat very simply and avoid eating out or processed foods.

richard

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Heather - unfortunately you haven't been gluten-free long enough for the symptoms to go away. I was on the gluten-free diet for about 6 months before my pain and nausea went away, although I still have flare ups from accidental ingestion. I still have problems with dizziness, although not as bad as before. I've been gluten-free for about a year now, but still have the dizzy spells. I never could relieve the pain and nausea with any over the counter medications or teas or anything. I know this isn't something you want to hear, but just know there is light at the end of the tunnel since your are gluten-free now, it will only get better, just be patient and stick to the diet like a bulldog, the symptoms will disappear.

Leslie

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Good advice on being patient. I have been gluten-free for several months and haven't notice much improvement yet... It can take a while for some individuals. You're on the right track !


~~~~~~~

Jen

Indianapolis, IN

gluten-free since Feb 2005

dairy-free

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Thanks for the advice guys,

I know it will take a long while before I start feeling better. I guess I just feel a little different since starting the gluten-free diet not necessarily better par se (and now I'm super vigilant about my body). I was hoping maybe someone would know some herbal secret or something (how we wish...). I'll try the papaya juice.

It's hard to be level headed sometimes :) I'm so skinny and weak, and the nausea is so frustrating because now I actually know what I can eat but the thought of eating is utterly unappetizing. Sorry to complain. I'm just a little anxious about the whole bit because I am moving to Michigan in a couple of months and that is a long way from Georgia and my boyfriend, friends, and family.

The thought of being the new girl and the weird sick girl is not appealing, but I guess I'm worry about things before their time. Besides you guys and the rest of this board are helping me feel less and less like a freak of nature. haha

-Heather

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Heather-

Feel free to complain here--and no worries--if you are a freak of nature, than the rest of us are too :D So did they keep checking you for a middle ear infection?

Hopefully you will make some good progress before your move comes. Ever try those naseau wristbands? I tried those years ago, and think they helped a bit... You could try that. You'd have to go with a little "80's-wrist-band-work-out-fever" look though, because its summer, and you might not be able to cover them up :) Whenever I have naseau I drink sprite, it always helps me for some reason. However, your naseau may be beyond that. There is also ginger ale. Wish I had better ideas!

PS--So do you really make prints? Because if you do, that's pretty cool!


~~~~~~~

Jen

Indianapolis, IN

gluten-free since Feb 2005

dairy-free

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Guest Viola

Hello, I ditto the be patient advice. Also, have your doctor check for acid reflux disease, especially concering the esophagus (sp). I was getting so dizzy and nausiated that I could no longer drive safely. After heart tests etc. my doctor discovered the the acid was causing my esophagus to spasm constantly, therefore cutting the air from getting through and causing dizzy spells. I'm now on two medications and with the gluten free diet rarely have the spells. Unless of course I get on a chocolate kick, that really gets the acid going :angry: But as long as I behave things are going much better. :rolleyes:

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Hi,

I also had the problem with dizziness, I would feel like I was going to black out behind the wheel and I had to turn the wheel over to my husband. I also have acid reflux, a lot of people with this disease have it. It also causes anxiety, don't know why, but it seems to be very common and does get better after app 6mos of gluten-free diet.Hope you feel better, a lot of us have been there.


The one resolution, which was in my mind long before it took the form of a resolution, is the key-note of my life. It is this,always to regard as mere impertinences of fate the handicaps which were placed on my life almost at the beginning. I resolved that they should not crush or dwarf my soul, but rather be made to blossom, like Aaron's rod, with flowers-Helen Keller

Judy- Gluten Intolerant

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Heather,

We could be twins. I have been gluten-free for 5 months but I am suffering from terrible nausea/dizziness now. It is utterly terrible and affecting my life.

I think it is candida that is causing it and I am going to a new GI doc on Tuesday for a test.

I got some herbal medicine from a dr. yesterday and it seemed to help. I get SO shaky and nauseated it is terrible.

I will be having a scope soon, too, to see if it is more of a stomach issue.

Let me know if you hear what is going on with you!!

Jennifer

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Have they checked you for hypoglycemia or other bloodsugar issues?


Tiffany aka "Have I Mentioned Chocolate Lately?"

Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy

G.F. - September 2003; C.F. - July 2004

Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me

Bellevue, WA

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I just had a bunch of bloodwork done right before getting tested for celiac disease. I'm pretty sure that they checked for that, but I go back to the doctor this week and I'll ask him.

It seems to be getting worse though. I've been falling down a lot, and the nausea/dizziness doesn't seem to change regaurdless of whether or not I've eaten (gluten-free, of course). I've heard that you can get worse before you get better, so maybe that's what I have going on. I'm just trying to rest up over the long weekend.

P.S. (to jenven)

I do make prints, mostly lithos and silkscreen. That's why I'm moving to Michigan -I'm starting at Cranbrook Academy of Art.

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I have already been checked for diabetes, low blood sugar, cortisol levels, and thyroid. None of the above.

I went to St. Louis this weekend and was miserable the entire time. If I didn't know better I would swear I was pregnant, that's how bad the nausea is. But I'm not.

I go to the GI doc tomorrow and I'm not leaving until I get nausea meds and some sort of answer on what causes nausea and what tests we can do to see if I have these things!!!!!

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Hi Heather,

I too was dizzy and nauseous to the point where I could not go anywhere including the store, around the block, to a friend's house, etc. Originally, the Dr. sent me to an ENT Dr. because they thought it was an inner ear problem. Once I went gluten-free, my symptoms subsided. However, I was unknowingly ingesting gluten through this 100% Ocean Spray Cranberry Mixed Berry juice I was drinking and not feeling well. Finally, I called Ocean Spray and yes, the natural flavors in that juice contains gluten. One thing you may want to try is being ultra strict with the gluten-free diet. Make sure you have little to no processed/packaged foods in your diet. Cross-contamination in factories is a huge issue, and if you are just starting out on the gluten-free diet and your symptoms are still evident, I would recommend being as strict as you can. Personally, I've noticed that the stricter I am, the better I feel.

Good luck! I hope you feel better soon - I know how uncomfortable it can be...

Jen :)


gluten-free-Jen

Arcata, CA

gluten-free since February 14, 2004

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Guest BERNESES

Heather- I too had horrible nausea and I get dizzy when I get hypoglycemic (which happens after I've been accidentally glutened). I just noticed that the nausea has gone away finally (I've been gluten free since January with the exception of the gluten challenge in April). I've been nauseous for the last six weeks and it just finally went away. It definitely takes awhile but it WILL subside. Like everyone said, just be patient and know that you can come here for support anytime. Hang in there, Beverly

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I have suffered from constant dizziness beginning exactly the same time I was dx with gluten intolerance (neg blood /pos. biopsy). All my GI symtoms improved on the gluten-free diet within a few weeks but a feeling of dizziness/disequillibrium would not go away. After 6 mos of having several near fainting episodes I was sent to a cardiologist and given a tilt table test that showed orthostatic hypotension. My blood pressure was not regulating when going from sitting to standing. I have read one article that mentioned OH as a symptom of celiac disease. After 4 mos on medication to raise my BP the dizziness was still present. After ruling out inner ear trouble I had a neck xray that has revealed some arthritis in my neck. Since starting glucosomine condrotine supplements I have seen some improvement.

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Hi all,

Thanks for all the great advice. I am going back to the doctor tomorrow for a follow-up on the diagnosis and diet, etc. I think I'll ask him to try to get to the bottom of all this. I haven't written in a few days because on top of all of this I caught bronchitis (which hasn't made the dizziness any better). I had to get an IV with anibiotics yesterday.

I'm trying to be as strict as possible on the diet. Mostly I've been eating fresh fruits and vegetables. I was a vegetarian before the diagnosis, so all the veggies don't seem like punishment :D

I do think I might get my heart checked. My father has mitro-valve prolapse (heart condition where a valve in your heart doesn't work quite right), and I've always had pretty low blood pressure, just on the brink of being too low. I'm glad you suggested that, I wouldn't have thought of a cardiologist.

Thanks for all the encouragement. Everything is still a litlte overwhelming right now since I'm still freshly diagnosed, but at least I have a few answers now. Maybe the rest will come later.

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That stinks you caught brochitis too! I hope you heal quickly girl! Let us know what happens...


~~~~~~~

Jen

Indianapolis, IN

gluten-free since Feb 2005

dairy-free

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What is low blood pressure in terms of numbers?

Mine has always been 120 over 80 and lately has been like, 112 over 68. Dr. says it's OK but it's not normal for me.

What numbers would be considered too low?

I have an extremely low blood pressure and my mom does as well. My endocrinologist says it is because of our thyroid but I am sure there are other things that can cause it.

My mom runs about 98/56


Kaiti

Positive bloodwork

Gluten-free since January 2004

Arkansas

Jeremiah 29:11- "For I know the plans that I have for you, declares the Lord, plans for you to prosper and not harm you,plans to give you a hope and future"

"One Nation, Under God"

Feel free to email me anytime....jkbrodbent@yahoo.com

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Wow Kaiti--that is wicked low !


~~~~~~~

Jen

Indianapolis, IN

gluten-free since Feb 2005

dairy-free

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Kaiti~

I'm not really sure what's too low, but mine has always hung around your mom's about 95/62 last time it was checked, and I usually get some response from the nurse about. I think if the first number is in the 80's they start to medicate you. I must make a disclaimer though that this is just what I *think* I remember being told.

I went to the doctor yesterday. He seemed to be on the side of just waiting the dizziness out. He said since I already have low blood pressure, I'm probably more susceptible to becoming dizzy and it may not indicate another problem. He said it might be good to get my heart checked out, but primarily because of my dad's condition. (He also said I shouldn't need another lower or upper GI for a good while...to which there was much rejoicing...yeah!!!!!!!!!)

I also got an IV with antibiotics for the bronchitis. I finally feel better today! Now, I can just focus on the celiac disease and the diet, which by the way I have a question relating to that. I've been trying to be militant about the diet, checking everything. I'm not supposed to have cow dairy or soy for the next 6 months to a year, so I've been drinking rice milk. It says the rice may be milled with wheat like .002%. This is probably a dumb question to which I can predict an answer, but is that still dangerous. (I ask because I hear Heinekein puts formaldyhide in their beer and people still drink it without keeling over -not that I do it anymore).

I think I am starting to be less overwhelmed by all of this stuff, and it helps that my super-sweet boyfriend is very supportive and drives me places when my head is spinning too much (if there were a celiac disease gold star I would give it to him). Plus, my doctor has given me B vitamin injections and ritalin to help fight the brain fog. I think if I could get my mind back in gear a lot of this would be much more easily digested ( ;) I didn't really mean to make that pun...)

Thanks for the continuing encouragement though. It definitely helps the everyday coping.

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Guest BERNESES

Oh no- reading these posts has made me concerned. I didn't know you weren't supposed to return to dairy for that long- I went gluten-free in mid- January but I ate gluten again for the biopsy in April so I've only been gluten-free for a month and I have been eating cheese and ice cream again and feel OK. Is this a bad idea?

Printmaker- I hope you feel better soon. Bronchitis knocks you out! Take care and get some rest. Beverly

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yeah...I figured it was a dumb question when I asked it. I knew the answer, and yes, it was rice dream. I think I might just stick with almond milk for a while anyway (I pretty much just use it in cereal).

Beverly- I'm not sure if everyone should stay off milk for that long. That's just what my doctor advised me. It really probably depends on your personal situation. I'd ask your doctor and see what he says. Originally when I started feeling bad, I thought I was lactose intolerant because I was sensitive to dairy, so in my case it definitely makes sense to steer clear of it for a while.

In any case, I think I am starting to get the hang of this gluten-free diet. It is getting easier, and I am starting to eliminate the things I thought were safe but are not (like RiceDream). I even felt good enough yesterday to make a scallop and asparagus stirfry with coconut rice :) mmmm....real food...that doesn't make me sick!

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