Been Absolutely Crazy For 5 Years

[nyspurs]

Hey guys and gals I've been knee deep in the board for the last few days reading up as much on everyones stories as I could. Would love to share and maybe get some input from anyone on the board.

Where to begin? , well for the last 5/6 years I've always had problems with food, I'm from Ireland but have been living in NYC on and off for 7 years, and i just seemed to deal with my problems with food. I would never eat breakfast (haven't done for the longest time, I'm 28) and realised that if I just didn't eat any food during the day I could pass myself till I got home, then I would just pig out on a really big meal anything goes types of food. Part of this was I would get really bad panic attacks that would last for a long time and they would come on anytime anywhere except for home. So i just kept on trying to deal with it, my social life took a hammering and the panic attacks got so bad that i just stopped drinking altogether, my hangovers were also REALLY REALLY BAD, i would be totally zonked for two days and could barely open my eyes really bad diarrhea etc.

So i stopped drinking 3 years ago, I had mostly drank beer and the panic attacks seemed to go away but i had developed vertigo and would still have major problems with foodm which had become so bad that i developed a mild case of agoraphobia, I wouldn't go out to restaurants, cinema even friends houses for fear of eating something and having "D" or my heart would race after i ate.

Well my wife and I had our first baby in October of last year and my symptoms were "under control" until just after christmas i got a really bad bout of something and lost about 30 pounds in a month, so i finally went to a GI doctor (every doctor before had just brushed me off) and he took blood test and I did a colonoscopy, just waiting to hear the results on wednesday.

By making me address it I have been thinking back to when it all started, the first time i ever had a panic attack was when i fell off a roof back in Ireland about 6 years ago, I definitely went into shock but typical Irish didn't go to the doctor, and it was clearly a serious panic attack. Since then my eating habits and problems with food have been pronounced. So I'll just run off a few symptoms and would love some reassurance or similarly afflicted pointers.

Symptoms

Diarrahea about twice a week in the mornings

Never put on weight whatever i ate

Panic attacks after food

Severe Headaches (bright sunlight would bring on a migraine extremely fast)

Heart palpitations after eating

Tiredness (even when i have slept for 8 or 9 hours)

Extremely bad diarrhea even after a couple of beers

Vertigo (which i never had before)

Agoraphobia (especially a fear of not being near a bathroom, New York Subways anyone? )

Which would also bring on some stomach upsets

the whole combination of effects after eating during the day (very sleepy, heavy head, racing pulse, need for bathroom)

Very depressed but not sure thats because of the effect it has had on my life

Sometmes get very angry for no reason

So these are just a few of the things I've been dealing with, I don't mind the prospect of a gluten free diet, I'll miss bread but I love fresh fruit and veg anyway.

With my job a lot has to do with social events and hanging out after work and really long days, to help me get through the day I hope that I'll get it sorted as waiting till 8 or 9 at night before eating has been very hard these last few months.

Anyway I've babbled too much, hope for some similar cases and knowing that its not "just all in my head" :D

Cheers everyone

[ravenwoodglass]

Your story is going to be familiar to a lot of us. I especially can identify with the agoraphobia.

Have you started the diet yet? Please be sure to give it a good shot after any testing that you choose to have done is done. There are many false negatives on blood and endo testing so be sure no matter what the results say to try the gluten-free lifestyle.

You have come to a great place for info and support, welcome. Ask any query you need to and also of course feel free to vent. There is a learning curve to celiac but all the angst of the beginning of the diet is so worth it once we start to feel better.

I hope you get some relief soon.

[Octoberme]

I have been experiencing the same thing!! Yet I went on the glutewn free diet for a month and so no change, and just went for a colonoscopy yesterday and they said I looked all tip top in there??

What else coudl be causing this if by chance it is NOT celiac? Any ideas?? If anyone can think of anything I am sure we would all be glad to hear it. After my colonoscopy yesterday and the doc saying " IO am fine and to just live with it " I am at the end of my rope with NO idea what to do????

HELP!

[turkeybird]

Hi and welcome!

I, too, suffer from panic/anxiety attacks. Mine started when I had vertigo due to fluid rentention from hormones I was taking (long story.) I would feel dizzy/spin/flip then "panic" that I was going to faint. I finally got help from a Dr. in terms of medicine and I feel amazingly better. After time, he challenged me to let the "rational" side of my brain take over in certain situations before the irrational side had me in full blown panic mode. Before, I was unable to go any place that I had previously been while having an attack. Today, I am happy to report that I can now travel freely and only take rescue medicine when needed (which is hardly at all.)

Now that I look back on all of this, I have reason to believe that the fluid retention may have been from gluten and not the hormones. At any rate, it's worth a shot seeing a Dr. to discuss the panic/anxiety issue. I'm sure glad I did. I felt like a prisoner in my own home. Afraid of having a problem in public and not being able to get any help.

Also, now that I am gluten free, I feel less anxious, less lethargic and better overall.

Hope this info is of help for you. I know it's tough to deal with. Hang in there and keep reading the forum. There is a wealth of info here that has indeed helped me with all of my food "issues".

Turkeybird

[nyspurs]

Well i got my results from the colonoscopy and he says everything is fine down there, so he's booked me in for an endoscopy on Wednesday of next week and a whole host of blood work.

He said that celiac is a high possibility but the only cases he's ever had of patients that have been diagnosed have all been women .

Though i would get sorted today and just start on the diet, now i have to keep to my usual schedule for another week.

[ravenwoodglass]

I have been experiencing the same thing!! Yet I went on the glutewn free diet for a month and so no change, and just went for a colonoscopy yesterday and they said I looked all tip top in there??

What else coudl be causing this if by chance it is NOT celiac? Any ideas?? If anyone can think of anything I am sure we would all be glad to hear it. After my colonoscopy yesterday and the doc saying " IO am fine and to just live with it " I am at the end of my rope with NO idea what to do????

HELP!

Did you have a colonoscopy or a endoscopy? The endo goes through the mouth and does not require a prep to be drank to clean you out. If you had a colonoscopy, the one where you clean out the lower intestine and enter through the bottom, he could not have found celiac because he wasn't in the right place. If he gave you an endo and said that everything looked fine did he take any biopsy samples? It doesn't sound like he did as those have to be reviewed.

It sounds like your best bet for recovery is going to be to just do the diet and see if it helps.

[ravenwoodglass]

Well i got my results from the colonoscopy and he says everything is fine down there, so he's booked me in for an endoscopy on Wednesday of next week and a whole host of blood work.

He said that celiac is a high possibility but the only cases he's ever had of patients that have been diagnosed have all been women .

Though i would get sorted today and just start on the diet, now i have to keep to my usual schedule for another week.

You should start the diet the day they do the endo. That may give you your answer before you go back for the results. There is a learning curve to the diet and everything that gluten hides in. Meds and supplements can be the worst as there are no labeling regs for those. Toiletries are tricky for the same reason. But you have come to a good place for the info you need to get started.

Endos can have false negatives so be sure to give the diet a good try after testing is done. And if your doctor has only diagnosed women it is because he isn't looking for it in men. It is just as common in men as in women, although I do think more women get diagnosed.

[darlindeb25]

He said that celiac is a high possibility but the only cases he's ever had of patients that have been diagnosed have all been women .

I don't agree with this either. More women may be diagnosed, only because they don't give up as easily--sorry guys!!! We are the tougher sex!!!

Me too nyspur, parts of your story are me. I would go without breakfast and lunch, eat my entire meal at night. I had panic/anxiety attacks, agoraphobia--had it all, was even diagnosed by a doctor with it all, even had consuling for it, that was 25 yrs ago. I have been gluten free for 8 yrs, so you can see how long it took me to find out about celiac disease. I was prescribed Xanax 4x a day, could hardly get out of bed, then they had me take it as needed. Which honestly didn't help much, only at the moment--certainly wasn't a real fix. I would panic, like you said on the subway, worried about if there was a bathroom close enough--I never would shop in a store that didn't have a bathroom, stopped eating in restuarants, panicked over family functions--everything. All because of gluten! Obviously, if you are from Ireland, you have flown here and back, I could never have done that--I am still terrified of flying!!

Get your tests done and go gluten free. Even if those tests come back negative, go gluten free and see if it changes your life!!! I'm betting it will. Good luck! By the way, I live on Long Island!

[debmidge]

celiac disease is not a man/woman thing. anyone who has an intestine can be diagnosed with celiac.

My husband has celiac, not me. Maybe women go for testing and get diagnosed more because overall men avoid doctors, so they suffer in silence (or with much whine-ing while refusing to go to the doctor)?

Anyway, upper endoscopy is the procedure to diagnose celiac, not colonoscopy (are you sure the doctor you went to is a gastro specialist?). Did the doctor run a blood anti-body test?

By the way, celiac runs in families.....as it's genetic. There's no pill for it and it cannot "go away" (like chilldren growing out of it)...like doctors used to be taught.