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Old 07-08-2003, 04:15 PM   #1
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Exclamation Celiac Disease Just Diagnosed

I've been struggling with several symptoms including dizziness, trouble walking after more than 10 minutes at a stretch, and finally diahrea for months now. I was diagnosed with POTS (a problem with a very fast heart rate) and now just last week, at The Mayo Clinic, I was told my blood tested very strongly positive for Celiac Disease. I am to have a small intestine biopsy within the next few weeks. I am wondering if anyone out there could share with me their personal experiences with this disease. I'm not looking for a "textbook" answer of what celiac is, but rather a first person account of what symptoms others have had. I know this is an autoimmune disorder and that scares me to death--how bad is that? It seems weird to have symptoms such as trouble walking and vertigo and motion intolerance and tachycardia with something like this...I understand the diahrea, but do these other symptoms fit with celiac? Any help would be EXTREMELY appreciated!!! Thanks in advance.

ps) not one single person in my immeadiate or extended family has ever had this problem, yet I've heard it's inherited!?
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Old 07-08-2003, 07:10 PM   #2
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I thought Celiac Disease was a condition in which the body can't tolerate gluten (a kind of protein found in grains). If I'm correct, it's usually diagnosed before the age of 3 due to intestinal symptoms. But, since intestinal-related symptoms can be due to many other conditions, I would think that people could be diagnosed with other ailments if they weren't specifically tested for Celiac disease, thereby not getting diagnosed properly until adulthood. I do know that there are many wheat/gluten-free foods at health food stores and in the specialty aisles of many supermarkets. My son was thought to be allergic to wheat products when he was little, so we had to buy products made with rice and soy. And many of the items we bought were geared for people with Celiac Disease. As far as I know, Celiac Disease is a chronic condition, not anything terminal, and I believe if a gluten-free diet is followed, most symptoms improve or disappear within several weeks or so. Hope this helps a little. Good luck!

 
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Old 07-11-2003, 05:53 PM   #3
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Thank you all so much for your relplies, and for the great web site information! I'll check those sites out right away. It's a relief to know that celiac can cause other symptoms than the standard gatroentestinal kind. I still don't quite understand how it is that all my life I have eaten anything and everything without a single symptom or problem...then at age 29 became extremely ill with debilitating symptoms which started with vertigo and didn't include stomach upset until a year later. Perhaps those sites you mentioned may answer those questions.
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Old 09-13-2004, 05:28 AM   #4
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Re: Celiac Disease Just Diagnosed

Just wanted to add my experiance. I have been ill for almost 2 years now. I have had every test imaginable. I am 33 years old. I started with problems while eating. I would get a rapid heart rate and get extremely tired. After afew months I started having neuro problems. Tingling,weakness,dizziness,etc... I was tested for MS and was cleared on that. Recently I started having non-stop diarrhea which landed me in the hospital after going into shock from low potassium. Finally the doctors decided to test for celiac because they said I have all the symptoms and I look malnurished. I have not gotten the results back yet but they have started me on a gluten free diet. They tols me my neuro problems could be from celiac. I also have white spots on my brain MRI and that can also happen in celiac. I also have lost sensation in both my big toes. Consatant muscle twitches.They tell me all of my symptoms can be tied into celiac. Find a good web site on this disease and you will be amazed at all the things that can go wrong with long term untreated Celiac. My mother,grandmother and brother all have other auto immune diseases. I am currently on Zoloft for my fatigue and Acecol for the diarrhea. Was on protonix but it quit working after about 8 months of use. Was also on Torol in the begining to control my heart.

 
Old 09-13-2004, 10:18 AM   #5
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Re: Celiac Disease Just Diagnosed

iv been on the gluten free diet for about 8 months now and, gained 50 lbs..and, still feel the need to gain..but i think iv preety much reached my normal weight..i was very weak and, always tired all my life anemia, depression, joint pains, diarheea, constipation, irritability..iv had everything..but i feel great now, iv never felt better..my diet is encredibely healthy..all natural im eating so healthy..i wish everyone could eat like this..bacuz gluten is linked to so many diseases..its not even funny..ei

make a search on the symptoms..its really sad that people are eating this stuff..it wasn't made to be eatin by humans..they test rats with gluten and, they die from it..could you imagine what it does to us.. ..

evrything will be fine..trust me..

 
Old 09-15-2004, 06:16 PM   #6
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Re: Celiac Disease Just Diagnosed

I think I must just be dumb. I can't seem to find anything on celiac that I can really understand, I'm not sure if that could be my culprit, as everything seems to be making me sick, just yesterday I had the barium test. (UGI) and the guy who done it said , reflux and inflammed doudenum, said from acid reflux ??? I don;t know what to think now, I just wish I could figure it out, I'm calling ny GI doc and demanding to be tested for celiac and h pylori!!!!!
Thanks for letting me vent here, I hope you find all you can to help you. I wouldn't know where to begin with a gluten free diet. anyone care to give the rest of us a sample menu??? Losec?? you seem to be very educated on this matter. Help us please
Thanks

 
Old 09-15-2004, 07:30 PM   #7
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Re: Celiac Disease Just Diagnosed

Just curious. Could someone read my symtoms and tell me if I have Celiac's or not?
I have had ongoing stomach problems for over a month now. I have lost close to 40 pounds and it has left me tired and weak.
I have seen 4 doctors now. Each diagnosed me with something different. My insurance is so picky I can't go see a gastroenterologist unless my doctor refers me. Every doctor I have been to wants to prescribe me this or that medicine and it is not working.

I haven't been able to eat. Its like the food just sits at the top of my stomach and won't go down.
It feels like someone is taking my stomach and uppper intestines above my belly button and twisting them into a pretzel. I have very uncomfortable gnawing pains, they don't hurt but it feels just like knots or gritty feeling.
When my stomach does this, which is pretty much 24/7 I get horrible gas. I am always passing gas or burping up air.

Is it dangerous for me to be losing this much weight so fast?
My husband is so scared that one morning I'm just not going to wake up. I am scared to. I want to lose weight because I am overweight but not this way!!!!
I mean I have eaten just probably this week only 100 calories total in food.
I am always drinking tea, gatorade, water or some kind of juice, usually orange juice.
Also my mouth and the back of my throat always feels thick like my saliva is thick.

Someone help!!!!

 
Old 09-15-2004, 07:45 PM   #8
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Re: Celiac Disease Just Diagnosed

yes of course..you can eat lots of healthy stuff very pure..

fresh meat..chicken breasts, veal, porc chops, beef, fish. shrimps all sea food..but all with natural spices..cuz spices are contaminated with flour(gluten),,yuck..
uncle bens rice..whole grain, white, basmati..
corn or rice pasta..
fruits
veggies
milk
cheese
vanilla ice cream
cottage cheese
yogurts(some)
fresh nuts
dark chocolates
GF bread
GF muffins
GF cookies
GF waffles
canned veggies
canned fruits
apple sauces
veggie bars
fruit to go bars
lays chips regular or ruffles
sun-maid raisins(little red box)
home made GF cakes
pure pop corn(real grains)
GF bars
tropicana juice100% pure
legumes
some candies
frozen veggies
frozen fruits
granita ice cream
nestle quik
some teas
coffe 100% pure
wine vinegar
rice vinegar
balsamic vinegar
dried fruits(figs, prunes, ect)
rice cakes
soja suace GF
pizzas GF
eggs
tofu
wine
tuna
sausages(get them made with your own spices)
ham(check with companies)
oil(any)
butter
salt
sugar
jello
whipped cream
seven up, sprite etc..call the companies
preztels GF
ricotta cheese
bococcinos cheese
puddings(cozy shack)

you can have more stuff to eat but thats the basics..

also check the medecations, soaps, creams, make-up, tooth paste, gum,..etc..everything that goes in your mouth or on your lips must be checked..call companies and, ask many questions...don't worry you have lots to eat...you just have to check everything..

i eat more then that, but thats a good start for you..

ps: check for crosscontamintion of certain items..ie rice cakes..etc..call the companies...ask them for questions ie: production lines..somtimes are contaminated with wheat flour(gluten)...ask them if their lines are well cleaned..
that should start you off right..gogogo..

 
Old 09-15-2004, 07:54 PM   #9
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Re: Celiac Disease Just Diagnosed

jhamilton30..
sounds like dyhidration..better go get tested real quick..in the meanwhile eat fresh meat..eggs and, veggies(steamed)..and, uncle bens rice..there is alot you can eat but, start with that.. keep us posted.

 
Old 09-17-2004, 11:43 AM   #10
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Re: Celiac Disease Just Diagnosed

Losec20,
Thank you for the sample menu, You are really a big help on these boards, Now I don't feel as scared if the docs come back with this dx!!!
Thank you soooooo much. calling companies is a great idea, I never would have thought of that...

 
Old 09-17-2004, 07:02 PM   #11
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Re: Celiac Disease Just Diagnosed

forgot to mention..you will need your own toaster to avoid crumbs coming on your bread..peanut butter, jams..stuff you eat must be labelled with you name and, only you can eat those...to prevent crosscontamination of wheat breadcrumbs...the more you stick to your diet the more sensitive you will become..but the healthier you will get...a little crum can make you really sick for days...depends on your sensitivity...keep us posted..

 
Old 09-19-2004, 06:44 PM   #12
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Re: Celiac Disease Just Diagnosed

Hi, jhamilton,

I am sorry that you have been having such a difficult time lately. I would strongly recommend that you go back to your primary care doctor and refresh his/her memory about your symptoms over the last month or so. The kind of weight loss you have been experiencing (no matter how overweight you might be) is not normal, and is potentially very dangerous to your overall health. (Obviously, you are losing the weight because you are unable to eat, but the factors underlying your GI tract's reaction to food must be explored and treated.) As someone else pointed out, you are probably severely dehydrated, too, or very close to it, and that alone should be treated asap.

At a very minimum, you need to have a complete blood work-up, including a CBC and CMP (comprehensive metabolic panel). It might be a good idea to do an EKG to make sure that the rapid weight loss/possible dehydration hasn't caused any cardiac arrhythmias. I would also ask your doctor about checking your stool for parasites (you can prepare the specimen at home).

It is unfathomable to me that you have been allowed by four different doctors to be "let loose" in your current state. If you can't get into see your PCP by Tuesday, or if you do see him/her and you are not taken seriously, then I would recommend that you go to the ER. It's possible that you might need to be admitted in order to run some tests. (I don't know what tests you have already had, nor what were the various "diagnoses" you have received, but something is still very wrong with your body.) I'm sorry if I'm sounding so clinical about your situation (and please note that I have no medical background, just a lot of health problems of my own - lol) or if I'm frightening you, but I do want to impress upon you the urgency of getting some definitive answers.

You might want to start your own thread with a post similar to the one posted here, in the hopes that more people will see it and respond to it. But first, please call your doctor's office tomorrow (Monday) morning and insist that you be seen that day or, at the latest, on Tuesday. Again, if you are not given an appointment within that time frame, then please go to the ER.

All the best of luck to you. Please let us know what happens as soon as you are able to do so.

Best,
Pat

 
Old 09-23-2004, 06:47 AM   #13
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Re: Celiac Disease Just Diagnosed

I too have started to have nuero issues as well and have been treated for Lyme disease. Well after 9 months I still have the symptoms.

Along with Crohns the blood test reveal that I may have Celiac disease.
I am trying a gluten free diet for a couple of weeks to see if it helps.

Does anyone have a good list of foods to avoid? And what foods are OK?
I have seen some things on the web, but I am having a hard time understanding the actual ingredients.

Thanks for your help.

 
Old 01-31-2005, 03:18 PM   #14
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Re: Celiac Disease Just Diagnosed

I am just searching for a reason for all of the symptoms I am having. I have had IBS as long as I can remember. About every six months I would have an attack of upper abdomen pain that radiates all the way through to my back. It seems to happen more often (lately VERY often) if I have had pizza, donuts...things with wheat. I don't know if I have a food allergy but I am also aniemic, tingling hands, memory problems, and now this awful pain that won't go away without a pain pill and sleep. I don't have a doc who is one for thinking outside the box. she pretty much has me Rx my self. HELP

 
Old 01-31-2005, 03:23 PM   #15
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Re: Celiac Disease Just Diagnosed

Oh, I forgot to add I have a rash across my cheeks and nose and my mouth gets very sore. The doc's best guess was acid reflux. I am taking previcid but it is not helping.

 
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