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    Do you have questions about celiac disease or the gluten-free diet?

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Greetings from the 'boro -

I found this website last week and have been using it as a guide for daily living since I have practically diagnosed myself as celiac. I have a plethora of symptoms and different allergies. I'm at the end of my rope - no doctors care to help (they think I'm a hypochondriac) and I've given up on them. My mother died the day I got an allergy test (July 1, 2005) of an unidentified stomach cancer - she was only 39. Not a single test showed that she had cancer but a doctor said that it was wrapped around her intestines when he attempted to perform a surgery on scar tissue in her stomach. So, needless to say, I'm a little worried and VERY sick of being sick! So...if you don't mind, please continue reading and I am happy to accept any and all information/help that you all may provide!

I started college in 2001 and was in the best health of my life. I worked out everyday and ate very healthy - all veggiess/lean protein/and fruit! I was 122 lbs and then one fateful day (in March) I began my battle with constipation, gained 15 pounds within 1 week (I had to wear my roomates clothes to class it happened so quick) and have gradually gotten more plump since - I'm at 160 now. I had severe pain in my stomach and tried everything to use the bathroom with no success. THe school infermery concluded that I have IBS, GERD, lactose-intolerance and stress - whoop-dee-do! This continues...

In 2004, I had a colonoscopy and an adenoma polyp removed. This started a ton of blood tests which were inconclusive for thyroid problems/chrones/celiac...I found a doctor that would sit and listen to me and actually care what I told her; she tested for thyroid and the test came back as me having a 9.04 tsh level - she called to tell me the day that I was moving to another city. I went to a new doctor once I moved who told me (after a blood test) that my tsh was fine and that I was too young to have a thyroid problem. Hah.

7/1/05 Prick test for allergies...the nurse joked that she was going to "place you (me) in a bubble and send you to Alaska!" I was allergic to everything that I tested for except for Chocolate. This included WHEAT, soy, dairy, melons, trees, grass, animals, etc.

I got married in April and the 16 weeks before the wedding, went wheat-free. I felt slightly better and was not as bloated as before. I tried adding it back during my honeymoon and got sick as a dog (I wanted to vomit but couldn't, instead, got diarrhea).

So...here I am today. I try to avoid wheat and lactose as they seem to triger my worst symptoms. I keep coffee and fiber at hand in hopes of a BM once a week. I am so bloated/distended that I barely fit into any of my clothes; even shirts that I bought last week won't fit now (and no, I haven't dried them).

I am miserable! I'm losing my mind, I can't remember anything, I can't stay awake throughout the day and I have no energy after work to even drive comfortably. If I eat ANYTHING consistently - as in more than 2x a week - I will become instantly intolerant for months. Bananas are a good example. If I have 1 banana, no repracutions, 2 bananas, still okay - 3rd banana within 7 days - my throat will swell, tongue will breakout and lips will swell. I keep a "geographic tongue", a constant skin rash of sorts, always have either hiccups/gas/burps - sometimes all 3 at once, migraines, joint pain, swelling in my hands/feet, I haven't had a period in 2 months and I'm not pregnant ( I tested)...the list goes on and on- I get hives from my own sweat!!! I'm really lost and feel helpless and hopeless.

I'm so sorry for such a huge post and I am sooooo grateful for any advice.

Thanks to you all for listening - anxious for a new lifestyle.

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Guest BERNESES

Welcome to the board! I'm glad you posted. Your story sounds like a lot of people's stories on here. i think you'll be in good company.

First of all, I'm sorry about your mom. My mom died in 2003 of stomach cancer and I know how brutal that is :( I'm adopted BUT celiac runs in my mom's side of the family and my mom's cancer was a very rare stomach cancer. Most stomach cancers are squamous cell carcinomas and her's was not. They was absolutely no reason why she should have gotten it in terms of lifestyle, but looking back, she thought her mom died of it too. I often wonder in retrospect if my mom was a silent celiac with no symptoms.

it seems like everything you mentioned- constipation, bloating weight gain, thyroid and GERD and lactose intolerance are really common in those of us with Celiac's.

first off, get off gluten- not just wheat, but all of it. Eliminate everything you are allergic of and intolerant of or suspect you are intolerant of and try a really basic diet. Meat, whatever veggies agree with you and whatever you are NOT allergic to. try rotating your foods. If having a banana more than once a week bothers you, don't have one more than once a week.

The tongue thing I've heard about celiac's too. There a LOT of GREAT people on this board who will be able to answer your questions and trouble shoot with you, so ASK away. Also, try to get in to see another doctor- maybe an endocrinologist- about your thyroid. That could be part of the problem too. Hugs and welcome, Beverly

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Guest BERNESES

oops- I'm sorry. Most stomach cancers are adenocarcinomas and hers was squamous cell carcinoma.

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Hi, and welcome to this board. As Beverly said, your symptoms sound awfully familiar. I had to diagnose myself as well, because the doctors didn't believe I could have celiac disease, because I was gaining weight, instead of losing it. They are just too ignorant.

You need to not just eliminate wheat and lactose from your diet, but all gluten (wheat, rye, barley, oats and everything that contains even trace amounts of those), as well as all dairy (for now). In fact, you may need to cut out all grains and starches to halt your weight gain, and to get rid of that bloating.

Make sure you go through all your personal care items (shampoo, conditioner, toothpaste, lipstick, lotion, soap etc.) and replace everything that contains things like wheat germ oil, barley extract, oat bran or whatever looks suspicious. You will also need a new toaster if you are planning on eating gluten-free breads (probably not a good idea for you, though), as you can't clean a toaster well enough to make it safe. You need to replace (or have your own) wooden cutting boards, wooden cooking spoons, plastic strainers, and scratched non-stick cookware.

Cutting out soy might be a good idea, too, as well as corn for now (to be tested after a few weeks to see if they cause a reaction).

And yes, get your thyroid checked again by somebody who knows what he is talking about!

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