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All These Problems No Answers


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8 replies to this topic

#1 Guest_gabbysmom_*

 
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Posted 15 May 2007 - 06:27 AM

I just turned 25 and i was hoping my birthday present would of been long needed answers, but once again i have none. I used to weigh 124 3 years ago and with in months my weight dropped to 83 lbs and i was more tired then i have ever been in my life, my periods went away, my hair started to fall out. I went to my doctor and he said that i wasnt eating enough when i new that i was ( i am always hungry and always eating). He even went as far as argueing with me that i am anerexic, he argued with me to the point that i cried. Then went on to tell me that i have mental issues because i was crying. So i took his advice and ate non stop, well then i started having a racing heart with no activity or minimal activity so i went to the dr again and he said that it was anxiety well it wasnt come to find out after a year of that an echo and a holter monitor later that i suffer from superventiculiar tachycardia and my heart rate was getting up to 190 bpm and my blood pressure was way to low had to see a cardiologist he put me on beta blockers. Went to the gyno she ran test and couldnt tell me why my periods went away said maybe anemia..nope not that. Hormone levels are good. She can figure it out. So my dr dosent belive i eat enough and i have to much stress thats the reason for all of it.. well then for this whole time i had stomach pain every morning in the middle of my upper stomach below my ribs would go away if i went to the bathroom right away and it was always diareah. Well one morning it didnt go away the pain kept on coming and i started to throw up bile went to the er and they said my wbc was over 17000 and wanted to take out my appendix, surgoens can rushing in and i was scared never mind the fact that i was in shock and couldnt tell you my name if you had asked. They did a cat scan and found that my intestines were the problem my colon was diolated and and there were air fluid levels what ever that means. So they said it looks like i have a partial bowel obstruction and they dont know that cause. They said that i might have to have emergency surgery but i never had it i stayed in the hospital 2 days, and i kept going to the bathroom on myself, though i was on morphine. Saw the surgeon 3 more months he ran test on my gallbladder, pancreas and did a upper gi with a small bowel follow thru and still no answers. He kept on saying that we need to get to the bottom of this so it dosent happen again but he couldnt find the cause so i was sent to a gastroenterologist who looked at my ct scan and said that i was either crohns or ulercitive colitis he was certain of it. Well he had me have a colonoscapy and the laxtives before the proceedure instead of cleaning out my colon the propper way made me vomit my own feces instead so that was a problem the test ended up showing nothing. Maybe ibs they said. My stomach swells everyime i eat i have constant diareah with alternating constipation, blood in my stool what looks like skin and it floats. I have the same pain that i was hospitalized for all the time. Im always tired and cold my weight i cant get it up for nothing, my hand and face swells all the time but mostly im just so tired and cant function, i with i could sleep all day long.Im dr ran every test that would expalin this even though he still say that i am anerexic which upsets me because i am a mother of a 4 year old and i want nothing but to instill good behaviors in her and for somone to suggest that im not is hurtfull. I recently say my file at the drs and all of his notes are that i am mentall ill with anerexia and belimia and thats why i have all these issues. The last time i went to the dr i brought my husband who told him that i eat all day.. and the last note was that i might have celiac disease. Im tired and i can take this anymore i honestly believe that i will die if i dont get help soon. I have read up on celiac as much as i could but i was wondering and desperatly need to know if this i a possiblity because a diagnosis of any kind woould make me so happy.
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#2 dionnek

 
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Posted 15 May 2007 - 06:35 AM

I had a lot of your same symptoms. Took me 10 dr's until one finally tested for celiac (I had never heard of it) and of course, that's what I have. If I were you, I'd either try to find a new dr. (definitely find a new dr. regardless!) and have him/her do the proper tests for celiac, and then try the gluten free diet to see if it helps. You have to be eating gluten for the test to come back positive, so if you want to have a dr's diagnosis don't start the diet yet, but go to a dr. ASAP. Make sure you check everything when you start the diet (vitamins, shampoos, lotions, etc.) as gluten can hind in all kinds of places - especially lipstick! Also, it took me about 6 months before my bowel movements got better, and I still have days with D 6 times or more, but I am definitely improving. Just saying that it might take a couple of months for you to feel better, but it's worth a try! Good luck.
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#3 CarlaB

 
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Posted 15 May 2007 - 06:35 AM

I'm sorry you're feeling so bad.

Have your doctor do a celiac panel now while you're still eating gluten. It's a simple blood test, but be sure he does the whole test and not just the IgA, which they sometimes do.

Your periods have most likely stopped due to being so thin. Estrogen is fat soluble, so if you're very thin, it's VERY COMMON to stop menstruating. It distresses me that a doctor wouldn't know this ... I taught natural family planning for 7 years and this was something we were taught. Many times runners will stop menstruating due to low body fat.
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gluten-free 12/05

diagnosed with Lyme Disease 12/06

#4 Megz

 
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Posted 15 May 2007 - 07:10 AM

I'm so sorry for everything your dr has put you through!

As most of us here have learned you are your own best doctor! Keep asking questions, keep looking for answers. You're problems definitely sounds GI, cut down to a very simple diet. Whole foods are the best for you: fresh vegetables, fresh fruit, unprocessed meats, fresh fish, rice, eggs and unprocessed dairy.

Get tested for Celiacs before you try going gluten-free it's be easier on your system (and on your 4-year old!). After the test just cut things out of your diet, and start with gluten.

You've been through so much, but there is hope! I had the anorexia battle with my doctor for years, I even went to a councilor for it (she convinced me I had it) the councilor told me I was fine and didn't have it and my doctor still tried to put me on anti-depressant medication for it.

Don't give up and if you find out that this is what you have, please get your daughter tested too so that she's not going to go through this as well.

Good Luck!
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~*~ ~*~ ~*~ ~*~ ~*~ ~*~ ~*~ ~*~ ~*~ ~*~ ~*~

Gluten-Free: December 2006
Gluten-Free Diet: FANTASTIC!
Blood-Test: April 07 NEGATIVE
Endoscopy: May 07 PENDING

~*~ ~*~ ~*~ ~*~ ~*~ ~*~ ~*~ ~*~ ~*~ ~*~ ~*~

Dance is my life, I live to dance and thus I only eat to live

#5 alamaz

 
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Posted 15 May 2007 - 08:08 AM

a. get a Celiac blood panel test ASAP
b. find new doctors ASAP
c. try to eat as many fresh foods as possible - fruit, veggies, meat
d. hang in there and remember you're not alone. every one on these boards has a story very similar to yours and in the end probably 90% of us figured it out on our own. since there isn't a magic pill for celiac disease American doctors don't want to believe it exists. I made an appointment with my primary and asked for the test, I was told "Well, it is the new buzz word these days but if it will make you feel better I don't see why not" I love the fact that she was eating her words two days later as she told me it came back positive. I am now searching for a new primary physician who might have a clue (right!)

you KNOW what is and isn't wrong with you. listen to your body and don't let the doctors tell you otherwise until you have a firm diagnosis!
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Diagnosed with Celiac Disease February 2007
Finally feeling better than ever!

#6 bluejeangirl

 
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Posted 15 May 2007 - 12:23 PM

what a nightmare! I'd be so angry your doctor won't sit down and listen to you. What does it take for heavens sake. You've gone this far so my advice is same as the others don't stop eating gluten foods until you get testing done. If it's not celiac you have to know what it is.

My story wasn't as bad as yours but similar. I just stopped eating gluten got better and never looked back. We pay for our own insurance with a very high deductible and I just didn't want to pay for all the tests. From all your symptoms I'd be surprised if you didn't have it. Good luck and hang in there.

Gail
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Gluten Free since Jan. 06
Gluten intolerant. DQ 0301 DQ 0602
Lactose intolerant.

#7 little d

 
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Posted 16 May 2007 - 08:59 AM

gabbysmom

Hi welcome, I hope that you will get better, hearing your story makes me appriate that I don't that same reaction to gluten to you and others. I thought my heartburn was pretty bad! Not after hearing your story, I really hope that you find your answers. Your doctor needs to get a new bedside mannors, totally rude!

Donna
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Fecal Antigliadin IgA 21 (Normal Range <10 Units)
Fecal Antitissue Transglutaminase IgA 13 Units (Normal Range <10 Units)
Quantitative Microscopic Fecal Fat Score <300 Units (Normal Range <300 Units)
Fecal anti-casein (cow's milk) IgA antibody 12 Units (Normal Range <10 Units)
HLA-DQB1 Molecular analysis, Allele 1 0501
HLA-DQB1 Molecular analysis, Allele 2 0501
Serologic equivalent: HLA-DQ 1,1 (Subtype 5,5)

You can teach an old dog new tricks!!!

#8 Nancym

 
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Posted 16 May 2007 - 09:32 AM

I think you might be able to identify with this story: http://www.npr.org/t...storyId=8892053

I hope you're getting the help you need. *hugs*
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#9 NoGluGirl

 
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Posted 17 May 2007 - 04:20 AM

Dear Gabbysmom,
Reading your story makes me want to cry, because it reminds me so much of my own. :( Tests never showed anything significant. I was told my blood work was fine, and my colonoscopy was as well. That was wrong. I found out I do have Celiac from my new holistic physician, and she said those blood panels particularly are not always accurate. I have a typical history as well. I have suffered with anemia, digestive problems since infancy, Thyroid disease, and had to have my gallbladder removed.

I would like to say, those gallbladder tests are only about 33 percent accurate at best. Mine showed nothing. I listened to my body instead of everyone around me, finally. Thank God I did. I got to see a surgeon after pestering my PCP at the time. He said surgery was an option. (When I was at the hospital getting another test run, I found out the moron doc I had before this one missed a gallstone in the very first test I had run, an abdominal CT!) I was told I was crazy, too. I was doped up on every anti-depressant or anti-anxiety drug known to man. I was accused of being anorexic or bulimic. I was forced to go to counseling. I was so angry, I could still squeeze that idiot doctor's neck until her head pops off! :angry:

I had the surgery. It had not been done a moment too soon. I found out at my ten-day post-op check-up that my gallbladder was severely inflamed and irritated, and could have ruptured! :o
According to what you told me, your symptoms indicate either a stone in the bile duct, or some sort of blockage or interference, such as an obstructed bile duct (such as being too narrow). You would not have bile going backwards into your stomach unless this is occuring. Considering the shape of your intestines, that would explain why the laxatives made you vomit your own fecies. Doctors are so stupid. They think they are God in a labcoat. These self-proclaimed geniuses are ruining lives! They practically destroyed mine.

My advice is, go on a gluten-free diet immediately. Get Enterolab stool testing done and the whole Celiac panel if possible. It is about $380 altogether. If you can afford it, do it. Also, find a doctor that is well aware of Celiac. You could probably go to a local healthfood store and ask. That is how I found my holistic physician. I have a list I can post for you. It is a great list to start.

I have a list that should really help. This is overwhelming. I went through this with myself six months ago. You spend most of your day cooking and cleaning obsessively. The rest you are on the phone with reps from companies trying to find out what is safe. I decided to save you the trouble!
1. There are a number of things in the regular grocery that are safe. Some things are labeled already. Wal-Mart's Great Value brand has numerous things you can eat.
2. For the love of God use Coupons on items you are allowed to eat. People can get them and print them out online even. Call some of the local stores and ask if they accept online coupons.
3. Check the ads online and in the newspaper. You would be surprised how many people do not do this.
4. Some items like rice flour and rice noodles are safe to buy at the Chinese or oriental market. The merchants are more than happy to help you if you cannot read the label.
Now, here is my list of great things to get you started:
Condiments:
Smart Balance Margerine*
Crisco Shortening
Crisco Oil
Pompeiian Olive Oil
Great Value soy sauce
Heinz Ketchup
Lea & Perrins Worchestershire Sauce (all Lea & Perrins Products are safe)
Sweet Baby Ray's Barbecue Sauce
Kraft French Fat-Free Salad Dressing
Kraft Thousand Island Fat-Free Salad Dressing
Pace Picante Sauce
Ortega Salsa
All Classico Red and *White sauces
All Jif Peanut Butters including Smooth Sensations
Welch's Grape Jelly
Cool Whip*
Philadelphia Cream Cheese*
Miracle Whip
Daisy Sour Cream (fat-free, low-fat, regular)*
Snack Foods:
Utz Potato Chips (Found at Samís Club)
Lay's Stax Potato Chips (Do not get any other kinds, these are the only ones made on dedicated lines)
Act II Microwave Popcorn
3 Musketeers candy bars *
Butterfinger candy bars*
Reese's Peanut Butter Cups*
Meat and Protein :
Eggs
Great Value Frozen Boneless, Skinless Chicken Breasts
Extra Lean ground beef
Carl Buddig lunchmeats all are safe
Kraft Cheese Shredded or sliced (Kraft is a great company, they never hide gluten in their labels. If it does not say wheat, barley, oats or rye, then it is not in there!)*
Cereals:
Cocoa Pebbles
Fruity Pebbles
Dora The Explorer Cinnamon Stars
Seasonings:
Durkee Cinnamon-ground
Durkee Ginger-ground
Durkee Chili powder
Durkee Vanilla Extract (in fact, all of their liquid flavorings, food colorings, and extracts are g.f.)
Emeril's Essence - Asian, Italian
Ortega Taco Seasoning (In fact, since they are under a very strict labeling policy, all of their products are gluten free at this time)
Miscellaneous:
Ortega Taco Shells
Starkist or Great Value Tuna
Butter Buds
Great Value Soy Milk
Lettuce
Tomatoes
Apples
Pears
Carrots
Great Value Canned Fruits and Vegetables
Del Monte Canned Fruits and Vegetables
Ore Ida Tater Tots
Ore Ida French Fries
Hormel Chili
Hormel Spam
Hormel Turkey Spam (Oven Roasted and Smoked)
Hormel Pepperoni
Dinty Moore Beef Stew
Jimmy Dean Fresh Taste Fast Sausage (links, rolls, and patties)
Plumrose Bacon
PAM Non-Stick Cooking Spray (all except for PAM for baking; it has flour)
Beverages:
Coca-Cola (Diet, Regular, Vanilla, Caffeine Free)
Diet Rite
Folgers Coffees (all including Cappuccinos)
Luzianne Tea (We get decaf)
Arizona Teas
Ocean Spray Cranberry Juice
Some Household Items that are safe include:
Cascade Dishwashing Detergent
All Laundry Detergent
Wisk Laundry Detergent
Dawn Dish Soap (all including the Power Disolver)
SoftSoap Hand Soaps
Murphy's Oil Soap
Hygiene, Cosmetics, and Beauty Items:
Dove Soaps, Shampoos, Conditioners, Lotions, and Styling Aids (Will clearly label gluten if present)
Crest Whitening Expressions Toothpastes
Colgate Toothpastes
Suave Soaps, Shampoos, Conditioners, Lotions, and Styling Aids (Will clearly label gluten if present)
Maybelline (Gluten is clearly labeled when present)
CoverGirl (Gluten is clearly labeled when present)
Wet'n Wild (All except for one of the mascaras)
Olay Quench Body Lotion
Crest WhiteStrips
Colgate Simply White

* Includes dairy
I hope this helps!
Sincerely,
NoGluGirl
P.S. I experienced unspeakable horrors as have you, and do not know if I will ever mentally recover from them. It is extremely painful emotionally.
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Jin

Strawberry Allergy, mold allergy, dustmites allergy, ragweed allergy, dust allergy, food dye allergy - 1985
Asthma - 1994
Ovarian Cyst - May 1999
Anemia - 2000
4 More Ovarian Cysts - March 2000
Bloodwork for Celiac - November 2000 negative
Colonoscopy, Endoscopy, Intercolisis, Gastric Emptying Study - May and June 2001 negative biopsy
Fibromyalgia - June 2001
IBS - June 2001
Gallbladder Removal - July 28, 2003 after doctor said the tests showed nothing, so it was not gallbladder disease. It was very inflamed and irritated and nearly ruptured the surgeon told me at my 10 day post-op check-up.
Thyroid Disease - August 2004
Celiac Disease - March 2007 Current Dr. refers to me as Celiac, as she says blood tests are often inaccurate.

Official Purple Glittery Bat Keeper, District Attorney, and Chinese Restaurant Owner of The Silver Dragon of Rachelville




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