All These Problems No Answers
Posted 15 May 2007 - 06:27 AM
Posted 15 May 2007 - 06:35 AM
Posted 15 May 2007 - 06:35 AM
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.
diagnosed with Lyme Disease 12/06
Posted 15 May 2007 - 07:10 AM
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.
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
Posted 15 May 2007 - 08:08 AM
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!
Finally feeling better than ever!
Posted 15 May 2007 - 12:23 PM
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.
Gluten intolerant. DQ 0301 DQ 0602
Posted 16 May 2007 - 08:59 AM
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!
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!!!
Posted 17 May 2007 - 04:20 AM
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!
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!
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:
Smart Balance Margerine*
Pompeiian Olive Oil
Great Value soy sauce
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
All Classico Red and *White sauces
All Jif Peanut Butters including Smooth Sensations
Welch's Grape Jelly
Philadelphia Cream Cheese*
Daisy Sour Cream (fat-free, low-fat, regular)*
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 :
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!)*
Dora The Explorer Cinnamon Stars
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)
Ortega Taco Shells
Starkist or Great Value Tuna
Great Value Soy Milk
Great Value Canned Fruits and Vegetables
Del Monte Canned Fruits and Vegetables
Ore Ida Tater Tots
Ore Ida French Fries
Hormel Turkey Spam (Oven Roasted and Smoked)
Dinty Moore Beef Stew
Jimmy Dean Fresh Taste Fast Sausage (links, rolls, and patties)
PAM Non-Stick Cooking Spray (all except for PAM for baking; it has flour)
Coca-Cola (Diet, Regular, Vanilla, Caffeine Free)
Folgers Coffees (all including Cappuccinos)
Luzianne Tea (We get decaf)
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
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
Colgate Simply White
* Includes dairy
I hope this helps!
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.
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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