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What Is Your Most Annoying Symptom?


erin24

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jerseyangel Proficient
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.


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prinsessa Contributor
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.

beelzebubble Contributor

for me it's nausea. i just seem to get nauseous easily, glutened or not. but when i'm glutened it just doesn't go away, i think until the inflammation does. blech.

Ashley Enthusiast
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.

jerseyangel Proficient
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!

slpinsd Contributor

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.

natalunia Rookie

Diarrhea & Fatigue are my two most annoying...


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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:

sillyyak Enthusiast

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.

slpinsd Contributor

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......

acousticmom Explorer
. . . . 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!

acousticmom Explorer
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!

Rachel--24 Collaborator

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. :(

jerseyangel Proficient
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.

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.

marciab Enthusiast

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.

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.

mick66 Newbie

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

happygirl Collaborator

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.

Rachel--24 Collaborator
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. :(

jerseyangel Proficient

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.

danikali Enthusiast

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!

slpinsd Contributor

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.

jerseyangel Proficient

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?

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    • ZandZsmom
      Are you using the same mixer that you used for your gluten containing baking? That could be your culprit.
    • trents
      I would ask for a total IGA test (aka, Immunoglobulin A (IgA) and other names as well) to check for IGA deficiency. That test should always be ordered along with the TTG IGA. If someone is IGA deficient, their individual celiac IGA test scores will be artificially low which can result in false negatives. Make sure you are eating generous amounts of gluten leading up to any testing or diagnostic procedure for celiac disease to ensure validity of the results. 10g of gluten daily for a period of at least 2 weeks is what current guidelines are recommending. That's the amount of gluten found in about 4-6 slices of wheat bread.
    • jlp1999
      There was not a total IGA test done, those were the only two ordered. I would say I was consuming a normal amount of gluten, I am not a huge bread or baked goods eater
    • trents
      Were you consuming generous amounts of gluten in the weeks leading up to the blood draw for the antibody testing? And was there a Total IGA test done to test for IGA deficiency?
    • jlp1999
      Thank you for the reply. It was the TTG IGA that was within normal limits
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