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I Am Really Curious

Kauk

By Kauk
in Coping with Celiac Disease

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Kauk Rookie
Kauk
Posted

This form has been so awsome. I dont feel so alone as I have. :D

I was wondering what was all your sypmtoms?? What did/does Gulten do to you?

Me, its affested my moods and I get constipated really bad. I was on two kinds of depression meds and now Im am not on any. I was sucidial and had serious rages. I feel better now but gluten will make me cranky and tired.

Thanks for sharing.

Kauk

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pinkdljj Rookie
pinkdljj
Posted

Yes, this forum has been such a blessing to me!

I was diagnosed 8 months ago and I know I have suffered all my life, just didn't know it. As a child I had severe mood swings, pitted teeth, insomnia. As a teenager I had anorexia, mood disorders, ammenorrhea, skin problems. As an adult it finally hit my gut and have had terrible anxiety, depression, migraines, insomnia, ibs, and infertility problems.

I'm sorry to hear you were suicidal. No fun. I attempted suicide last year and ended up in a mental hospital for a week. Docs tried every sort of medicine to help me. Finally I was put on ativan and celexa. This was all before finding out. I was still sick and the drugs weren't working when my sister took me to a naturopath. She read my symptoms and told me I was probably celiac. I couldn't believe it.

I too am a different person after going off of gluten. I've been able to cut my drugs in half slowly and have had no rebound anxiety or depression. Everything has changed. I was glutened last month and the anxiety came back full force for two weeks. It felt like I had adrenaline surging through my body. Horrible insomnia, nausea, panic attacks, etc... just because of gluten.

I thank God every day I finally figured out what was wrong all this time. I have always felt so different than every one else. Now I know why. I was slowly being poisoned.

gfp Enthusiast
gfp
Posted

Wow I am so pleased for you....

I get 'classic' GI symptoms but to be honest these are either pretty mild or just overshadowed.

I hear people complain about how much it hurts and I wonder just how much can it hurt???

After 20 years of migraines (to the point of bursting blood vessels in my eyes, nose and bleeding ears) ... 5 years gluten-free and no migraines (perhaps 3 over the 5 years).... on non of the seriousness of before. I once broke my big toe while I had a migrane and didn't realise until the next day even though I opened a door over it and it was bent right over the the rest of my toes. At the time I had taken enough codeine to kill a horse... which did little for the migrane but did stop me feeling my toes.

So I find D is embarrassing, its an irritating pain.... and after 5 days it's REALLY irritating but I can't understand people who thing this is the most debilitating symptom.

However the symptom I am most glad to be free from is the depression.... I had inexplicable rages and even worse possibly inexplicable conversations where I was a little too honest... I once told my boss there was no point explaining a technical point to him because he would be incapable of understanding.... true but not the correct phraseology ???

Since being gluten-free I have had my share of accidents....

Migranes have never come back...

Peripheral neuropathy has never quite disappeared but has got better....

Alternating D and C I still get when I mess up....

Depression and mood I get on the tiniest amount... its almost more sensitive than any other symptom

darlindeb25 Collaborator
darlindeb25
Posted

When I think back now, I realize this disease was in control of me for years before I even knew it. My mom told me I always got carsick as a small child, they always had to take extra clothes for me. Meatloaf always made me sick, my mom makes it with oatmeal. Any deserts with oatmeal and flour made me ill. I was prone to tummyaches. I always had aches and pains. Everything escalated when I was pregnant with my 2nd son, who will be 32 in December. I have always had headaches, which intensified at that time. My stomach seemed to be upset so much of the time. As many of you probably had done, I thought toast was a comfort food.

So I find D is embarrassing, its an irritating pain.... and after 5 days it's REALLY irritating but I can't understand people who thing this is the most debilitating symptom.
Diarrhea is a debilitating symptom when it takes over your life. I was sick nearly every night, which keeps you awake, sleep is a very necessary element in our lives. Fatigue is the #1 symptom of celiac disease, and being sick most of the night, prevents that necessary element. Everything seems to balloon after that. 6 yrs later, when I became pregnant with my 5th child, while taking birth control pills, I was very depressed that doctors could not figure out what was going on with me. No one ever suggested I may not be absorbing meds.

By that time, I was also suffering panic attacks, which intensified after having my daughter. It was usually mild panic until then. When my daughter was 2 months old, I had the worst panic attack ever, I could not get out of the car...I thought I was going crazy. The doctor prescribed Xanax, 4x's a day. I could hardly get out of bed, and with 5 kids, 8 and under, I did not have the time to lay in bed. The doc then told me to take Xanax as needed, whenever panic hit me. I also was sent to a mental health clinic...diagnosis, it's all in my head!!! How many of us have heard that one??? Of course, mental health was not my problem. Several years later I was prescribed Paxil, which I was on until I went gluten-free in 2000.

Over the years, I gained and gained weight, which is also a symptom of malnourishment. So many doctors think you have to be skin and bones to be malnourished, that is totally not true! Diarrhea took over my life, I could not make plans with friends to go anywhere, I always felt I was taking precious time away from my kids, disappointing everyone in my life. There were times, in the middle of the night, when I would ask God to end it all...I really didn't want that, but I was so tired of hurting. My tummy always felt like a huge black and blue. WhenI slept, I slept with a heating pad.

My sister was finally diagnosed with celiac disease in Mar of 2000. By July of that year, she had convinced me to go gluten-free too. I had no insurance by then, no extra money for testing, so I jumped on the gluten-free wagon. I have been gluten free for 8 yrs now, and have never, ever purposely ate gluten. I have peripheral neuropathy, constant headaches (some days much worse than others, but it never goes away), recently diagnosed with sleep apnea, and now, more intolerance's than I ever thought possible. I can name the foods I can eat much faster than the ones I can't have anymore. After a few months gluten free, I weaned myself from Paxil (my doctor had told me how to wean myself months before) and I lost 60#. Whenever my body is out of sink, I gain weight. I have recently lost 40# again, and seem to be better.

My neuro recently ran some major blood work. I have double DQ1 genes, and of course, none of the other tests showed any gluten problems, but then, I have been gluten-free for 8 yrs, they shouldn't show it now. Many of my vitamin levels are on the low side of normal, I added Vit D and a little B6 to my regiment. I also take 3000mcg of B12, a good multiple, and Ester C.

Once I have my CPAP machine, the neuro tells me my headaches should lessen considerably...I am so looking forward to that!!!

We are all different, what is debilitating to one, may not be a problem for another. Terrible headaches may be terrible for one, yet joint pains are terrible for another. The symptoms that gluten causes, is widespread. I was listening to the other women at work yesterday about the best foods for you. They listed whole wheat, wheat germ, whole grains in general, and I told them they do not realize how much damage they are causing to their systems. They do not believe me, I hope one day they do not find out the hard way, like so many of us have!

lsmall05 Newbie
lsmall05
Posted

Here's my story:

It came out of the Blue.

Diarrhea, throwing up, and no explanation. So my mother who cares very much for me puts me on a restricted diet. Sandwiches, soups, and crackers. (Those of you that know Celiac are smiling while shaking your head)

Luckily my mom works for a gastroenterologist & nutritionist. When eating nothing but wheat and getting sicker, it was a no-brainer for him to test me for allergies and celiac. I am one lucky dude that this was caught so quickly by a remarkable doctor. I was really only sick for 3 months.

From time to time I wonder if I still have it. And so I try that brownie, and yep, my celiac is still there and ready to remind me.

Maybe I'm just a guy, but life goes on. Eat what you can, not always what you want and is convenient.

Kauk Rookie
Kauk
Posted
  • Author

Wow, thanks for sharing!!! It makes me kinad teary. To know I was not the only one who had such crazy moods. I used to wake up everymorning wishing I had died in my sleep. It was horrible. When I was pregnat with my son I had food averstion and GD, and I was sick the entire 9 months, after my daughter I I had PPD so bad I didnt want her at all and had such rages I had her taken by hubby UGH!

A few years ago I decided to "GET HEALTHY" so I started really going on wheats ands grains. The more I ate the worse I felt. Never being able to go to the bathroom. I was told I had IBS but days later my sunt comes here out of the blue...never saw since I was 11 and tell me she has Celiac. Well...ok..LOL So yeah I was tested and walla...My doc was shocked. lol He didnt beleive it. I still suffer from Constipation but I eat alot of protein and not enough water...my own fault..lol

Thanks for sharing. HUGS ALL

Rebecca

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