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erin24

What Is Your Most Annoying Symptom?

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My are absolutely the nausea and the feeling I'm going to pass out. I get so weak I bearly feel conscience at times.

Rinku--Those were my symptoms at your age. Have you been tested for anemia? Even if you have, a multivitamin with iron might be a good idea. Those only have the MDR of iron in them.


Patti

"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

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I'd have to say the lack of control! When you gotta go YOU GOTTA GO! The D is intense. I sometimes feel like a stunt double, took a couple headers jumping over things to b line to the bathroom quick!. I sorta gave up on wearing things with zippers and buttons! HA

Stef 4 Dogs

I know what you mean. Luckily right now I am a stay at home mom. I have easy access to a private bathroom. And I usually don't have stomach problems in the evenings when I am at school.

Besides the ever-favorite constant nausea, dizzyness and painful 'old guy beer belly', I get super super cold for at least three days after a glutening. It's as if I have no way to retain heat (very annoying).

Btw.. It's so nice to talk to people who actually understand what I am going through. It gives me strength. Thanks.

That is so strange because I am ALWAYS cold. I am still learning what I can and cannot eat, so I don't know if the constant coldness will go away after being gluten free for a while. I am one of those strange people who loves really hot weather because I am finally warm.

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Rinku--Those were my symptoms at your age. Have you been tested for anemia? Even if you have, a multivitamin with iron might be a good idea. Those only have the MDR of iron in them.

Patti- I believe so, but, I think I didn't have anemia. I do take a multivitamin everyday. I'll give it a look and see if there's a good amount of iron in there.


-Diganosed with Celiac's Disease on April 15, 2005.

"Art washes away from the soul the dust of everyday life"-Picasso

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Patti- I believe so, but, I think I didn't have anemia. I do take a multivitamin everyday. I'll give it a look and see if there's a good amount of iron in there.

Rinku--Just checking! Nausea and dizziness are the worst :angry: Anyway, hope you're feeling better soon!


Patti

"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

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For me the worst is the anxiety/panic/difficulty breathing/reflux/chest bubble symptoms(looks like I'm in the minority here) and 2)brain fog/fatigue. I'd also like to add: 3)the fact that I get symptoms at all when I am adhering, to the best of my knowledge, to a gluten-free diet 4) that the "glutening" seems to last for about 5-7 days 5)explaining it to people 6)weight loss.


Weak positive bloodwork (IgG only)

"Mild flattening of villi" noted on endoscopy, but negative biopsy

Positive response to gluten-free Diet 1/14/06

Diagnosed gluten intolerant by Enterolab

HLA-DQB1*0201, 0201 (HLA-DQ2, DQ2)- 2 Celiac Genes

Vitamin B-12 deficiency

Have not received Celiac Diagnosis based on negative biopsy

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Diarrhea & Fatigue are my two most annoying...


Natalie

Multiple allergies since 2 years old - 1979

Diagnosed with Endometriosis - February 1998

First visit to Gastroenterologist - 4/4/06

Negative Bloodwork - 4/4/06 (only IgG & TtG)

Gluten Free since 4/17/06

Colonoscopy - 5/8/06

Diagnosed Gluten Intolerant - 5/22/06

Celiac Disease suspected, but not confirmed due to going gluten free before biopsy

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Guest Robbin
For me the worst is the anxiety/panic/difficulty breathing/reflux/chest bubble symptoms(looks like I'm in the minority here) and 2)brain fog/fatigue. I'd also like to add: 3)the fact that I get symptoms at all when I am adhering, to the best of my knowledge, to a gluten-free diet 4) that the "glutening" seems to last for about 5-7 days 5)explaining it to people 6)weight loss.

Omg, I hate that. I get that too. Feels like a balloon is being inflated inside my chest cavity above the stomach and then I get the same feeling in the throat/esophagus. Yes, that definitely is one of the baddies. I get that so much worse with anything barley. I think I am allergic in other ways to barley besides the celiac thing. It is very scary when that happens. :blink:

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Generalized Weakness. I am still "recovering" (whatever that means) and I still have a plethora of symptoms, including D, C, brain fog, muscle wasting, and generalized abdominal pain. No fun.


Diagnosed 11-11-05 after 3 months of major symptoms, including 2 hospitalizations and 7 ER visits for dehydration and syncope. Otherwise, I had all "normal" blood tests and major scans. During those 3 months, lost 20 pounds, all my muscle tone, and ultimately could not walk for 2 days. Spent 6 days during the second hospitalization hooked up to IV and STILL passing out IN BED due to malnutrition with doctors staring at me AS IF it was all IN MY HEAD

Other related symptoms:

Osteopenia

Hypothyroidism

Gluten Ataxia - three "nodes" recently found in my brain (thought I had MS)

Muscle weakness

Fatigue

Chronic Constipation

45 pound weight gain since going gluten-free!

gluten-free since 11-11-05. Cannot eat bananas, potatoes, or spinach. Recently reintroduced yogurt into my diet and able to tolerate plain yogurt with sugar.

HATE the diet but psychologically tolerating it for my health.

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Someone mentioned an anti-spasmodic......can you share? What is the name of it? I want that- yeah- I feel like someone is poking my stomach from the inside- like I haven't eaten in a week......


Weak positive bloodwork (IgG only)

"Mild flattening of villi" noted on endoscopy, but negative biopsy

Positive response to gluten-free Diet 1/14/06

Diagnosed gluten intolerant by Enterolab

HLA-DQB1*0201, 0201 (HLA-DQ2, DQ2)- 2 Celiac Genes

Vitamin B-12 deficiency

Have not received Celiac Diagnosis based on negative biopsy

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. . . . I am ALWAYS cold. I am still learning what I can and cannot eat, so I don't know if the constant coldness will go away after being gluten free for a while. I am one of those strange people who loves really hot weather because I am finally warm.

Me, too. I'd be chilled for months (and not just during Michigan winters), always feeling like I'm coming down with the flu. After 2-1/2 months gluten-free and 1 year dairy-free, the chill has gone away--hope it stays gone & it's not some fluke! Hope yours goes away, too!


Gluten-free Casein-free and brainfog-free since 1/06. Yeeeeeha!

Allergic to casein, intolerant to eggs.

Eliminating sugars and most starches (even the gluten-free ones) has made me feel like myself again after many years.

14-year old son diagnosed with biopsy 12/05, gluten-free since 1/06.

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BRAIN FOG

I am not gluten free (yet) and am currently dealing with Brain Fog big time. I HATE it and it puts such a damper on my life. It is as if I am not connected to the ground and I feel like I am not really mentally here. Like I am living my life in a dream like state. I feel like I am going to tip over but I never do. It feels like I am tipping backward on a chair and almost going to tip but just never do. I've been trying to figure it out for years and recently dicovered that I have some relatives with Celiac disease. I've just started my learning about Celiac and the brain fog thing is by far my biggest problem.

I've lived with terrible brain fog for 15 years, much of it feeling downright drugged. At times, I wouldn't even drive because I didn't feel alert enough. Eliminating dairy a year ago helped a lot (severe allergy), and going gluten-free 3 months ago seems to have helped even more. (I so want it to last--I'm a little afraid to get my hopes up.) Now that I feel more clear-headed, I can't believe how horrible I felt for so long, and how much of life I've missed out on. I can honestly say I'm not even tempted by the gluteny foods I used to love, because it's so great to feel like myself again!!

I highly recommend you try going gluten-free. I've heard at least 3-6 months recommended, since it may take that long (or longer) to get the gluten out of your system. I know the change is challenging, and much moreso with brain fog, but you owe it to yourself to try it. And you have to go totally gluten-free--90% gluten-free doesn't do you any good.

Wishing you the best!


Gluten-free Casein-free and brainfog-free since 1/06. Yeeeeeha!

Allergic to casein, intolerant to eggs.

Eliminating sugars and most starches (even the gluten-free ones) has made me feel like myself again after many years.

14-year old son diagnosed with biopsy 12/05, gluten-free since 1/06.

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My worst symptom by far is brainfog....I hate it . :angry:

I sometimes can barely function due to the brainfog and its the most frusterating thing I've ever experienced. Next would be mood swings and depression....I have anger "episodes" and also can get overly emotional. Those are my worst but the physical symptoms are no fun either. I get the freezing chills too...also intense pressure in my head, vision problems, fatigue, tingling/numbness/burning sensations and I get more sensitive to other foods. :(


Rachel

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For me the worst is the anxiety/panic/difficulty breathing/reflux/chest bubble symptoms(looks like I'm in the minority here) and 2)brain fog/fatigue. I'd also like to add: 3)the fact that I get symptoms at all when I am adhering, to the best of my knowledge, to a gluten-free diet 4) that the "glutening" seems to last for about 5-7 days 5)explaining it to people 6)weight loss.

Hi--I was having the same thing--I don't know, for me, if it's Celiac related because I began to have it about 5 months into the diet. That's the confusing part :blink: . But I wanted to tell you that I have a new Allergist who diagnosed me with bronchial spasms caused by reflux. He is treating me with Prevacid and Zyrtek. I've been taking them since Monday, and the pressure is gone! I had the breathing/reflux/chest bubble that you described, and it's been going on since December. My doctor said that these things go hand in hand--the reflux usually comes first and the bronchial stuff is the result. Mine caused anxiety, especially at night--now that the pressure had let up, I am even sleeping more soundly.


Patti

"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

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Guest nini

I forgot to mention that I HATE BEING COLD ALL THE TIME... I feel like I'm FREEZING constantly! Even when it's warm out I'm cold!

Oh and when I do get accidentally glutened that feeling of having swallowed broken glass is SOOOOOOOOOO Annoying.

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This is interesting. Ya'll have covered most of my symptoms that I thought were from CFIDS/FM. Fatigue, brain fog, joint pain, etc.

I've only been on the gluten free diet since Sept 2005, so I am still trying to figure out what gluten does to me.

I tried plain white macaroni in Jan and had "D", horrible pains, and slept for 2 days.

Last Sunday (when I was possessed), and ate Carraba's bread, I had complete and total brain fog, "C",

gas, gas, and more gas. And I am having adrenaline rushes / hyperactivity ??

Anyone get sweaty palms ? This started again 2 days ago. My doctors have always told me I was anxious/nervous around them. Idiots !!! My palms sweat profusely from time to time.

All my symptoms are annoying, but the stomach pain is by far the worse.

Thanks for all your help here on this board. Ya'll have really helped me (the unpossessed Marcia), stay on this diet.


Jan 1990 - Dx CFS/ME/FM (URI's, Ataxia, myoclonus, orthostatic hypotension, insomnia, brain fog, swollen lymph nodes, sore throat... ) Completely Disabled (housebound and bedridden at times)

2004 - Digestive pain all the time.

May 2004 - Hiatal hernia, erosive gastritis, gastroparesis (endoscopy)

August 2004 - Colon polyps, diverticulitus, internal hemorrhoids (colonoscopy)

No relief from Nexium, Prilosec, Protonix, Zelnorm, Miralax, Imodium, Lomotil ...

July 2005 - GP recommended WFDFSFEFCF + vegan (Also, anything that hurts free)

Immediately stopped needing naps and digestive pain reduced.

Sept 2005 - GFDFCFSFEF + chemical free - Immediately stopped feeling jittery / buzzing and digestive issues were much better.

June 2006 - Dx B12 and iron deficient. Started B12 injections and using cast iron pan.

August 2006 - MYOCLONUS GONE. (off Klonopin)

September 2006 - ATAXIA, INSOMNIA and Feeling like the floor was moving under my feet gone.

June 19, 2007 - Positive DQ2, Dx Celiac

October 2007 - Sleeping like a baby, waking up with energy, but still having fatigue/stamina issues

Nov 2007 - Started Paleo diet for chronic hypoglycemia

April 2008 - GTT normal. I'm no longer hypoglycemic. Started Low oxalate diet for kidney stones.

May 1, 2008 - Began salt loading for OI/NMH - noticed immediately muscle weakness was gone. I was sodium deficient but my labs don't reflect it. Still working on OI and PEM.

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Guest BERNESES
Someone mentioned an anti-spasmodic......can you share? What is the name of it? I want that- yeah- I feel like someone is poking my stomach from the inside- like I haven't eaten in a week......

One I've taken that worked was Bentyl (it's a prescription though).

For all those of you that mentioned being cold all the time, before I got sick I had the warmest body. Always hot, even in midwinter. Then, BOOM, I was freezing cold even in the summer. I am happy that it FINALLY subsided except when I get glutened. Then, it could be 90 degrees out and I'd feel loike I was in Antarctica.

For nausea, my primary gave me phenergan. Works great. But I got really constipated whenever I took it (for like weeks) and I found out that antihistamines are constipating so now I only take it when I'm desperate. I figure having all that junk hanging around in your system can't be worth it. She suggested I go to a natural pharmacy and I got something by a company called Boiron for nausea/vomiting. It works almost as well as the phenergan without the drowsiness/constipation. I think it's called Ipechuana. You put 5 pellets under your tongue and it seems to settle my stomach when I need it.

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Hi everyone,

I would say that stabbing pain and brain fog are the worst most of the time. Although, when I was reading this yesterday, and I was about to post, the nausea kicked in hard. It lasted for hours, longer than usual. I don't recall getting glutened, but I suppose since this is not a perfect world and I am certainly not that it is possible. <_< fatigue , due to Sleepless nights? is another big one, is that related to celiac disease, does anyone else have trouble sleeping, falling and staying asleep? I rest better in the afternoon with a nap. Anyone else? I went to bed at 12 last night and was wide awake at 3:30, so I stayed up and read then watched the early news with a cup of tea, decaf.

Thanks for your support, Mick66

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aw, my heart can sympathize with all of you! it is a hard question to answer as I get the whole range of symptoms...from brain fog to severe arthritic type pain to fatigue. In terms of just the flat out worst...it definitely has to be the "D." Ate at Outback this past week with friends of my parents that I haven't seen in a few years....ended up in the Outback bathroom. Yeah. Good times. So embarrassing but luckily they understood. Sigh.

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For all those of you that mentioned being cold all the time, before I got sick I had the warmest body. Always hot, even in midwinter. Then, BOOM, I was freezing cold even in the summer. I am happy that it FINALLY subsided except when I get glutened. Then, it could be 90 degrees out and I'd feel loike I was in Antarctica.

Yeah me too...I had a very warm body before I got sick. I remember feeling something wasnt right when I was all bundled up at work....I closed my office door and blasted the heater and when anyone tried to come into the room they'd be like "WOAH...its way too hot in here...how can you stand that?" They wouldnt be able to be in my office at all....and I was still cold. That was when everything started for me. My thyroid was hyper from Graves at the time which would normally make me hot and sweaty but instead the opposite was happening. I was cold and gaining weight. My thyroid was blamed for everything and it got nuked...but of course I didnt get better. My poor thyroid....it was an innocent bystander. :(


Rachel

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I think my feeling of hot/cold have leveled off some since gluten-free. This past winter is the first one in memory that I didn't wear socks to bed. My feet used to be freezing. It will be interesting how the summer goes.


Patti

"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

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Wow! You all have some level of all of the symptoms I have. Well, I'd say my MOST annoying symptom is horrible BLOATING. I forgot who mentioned this, but I'm exactly the same...I'm 5'7 and fluctuate between 115-121lbs. When it's a good day, and I am not bloated, I am 115, and those days that I look like I'm about to pop a baby out of me, I'm 121 and don't seem to get any lower. And it's not like I change the amount of food I have or anything. ON the good days, I could eat like a total pig for like days straight and my stomach is still flat and I'm don't gain any water weight. It's horrible because I have to wear bigger clothes to work when I'm bloated, even though the butt and legs are saggy. It's sucks to have to dress up for work when your stomach is as round and hard as a globe or something! It would be one thing if I was pregnant, but I'm not!

Oh, and yes, after I get glutened, it's annoying the day after when I have HOOOOOOOOOOOOOOOOOORRRRRRRRRIBLLLLLLY EMBARASSING GAS (SO BAD!) and I feel like I have mono again because I can barley walk I'm so tired! Oh, not to mention the back burn, bad stabbing heart burn and stomach cramps. I really hope this all goes away some day!


Danielle (Dani)

Diagnosed with Celiac Disease by Dr. Green (gene HLA DQ8) 1/05/06

Diagnosed: Gluten Sensitive through enterolab 11/17/05

Diagnosed: Casein Sensitive through enterolab 3/7/06

Diagnosed: Interstitial Cystitis (IC) 07/26/06

I finally put my picture on because it doesn't look like I'll be eating ANY cake on my Wedding day..........I'm the one in the middle.

Intolerant to: (besides gluten)

Casein

Peanuts (can handle very small amounts)

Any kind of additives or preservatives

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jersey angel-

i just saw an allergist, too, and i was just diagnosed with bronchial spasms due to reflux, as well as asthma. it's definitely the gluten that causes the severe (not helped by meds) reflux which triggers these bronchial spasms.


Weak positive bloodwork (IgG only)

"Mild flattening of villi" noted on endoscopy, but negative biopsy

Positive response to gluten-free Diet 1/14/06

Diagnosed gluten intolerant by Enterolab

HLA-DQB1*0201, 0201 (HLA-DQ2, DQ2)- 2 Celiac Genes

Vitamin B-12 deficiency

Have not received Celiac Diagnosis based on negative biopsy

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Wow--thanks. The Prevacid does seem to help me, though. I can't believe we got the exact same diagnosis--I was beginning to think I was weird or something because my GI told me it was gas, and to take an over the counter gas med. He seemed uninterested in the whole thing :angry: . How do you handle it?


Patti

"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

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