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Thank God I Now Know
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14 posts in this topic

Hi! Not sure how or where to start. I am a 54 year old female that has just recently been diagnosed with Celiac Sprue, Diverticulitis, Gastritis, and Lactose Intolerant. I am currently 5

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Nice to meet you, Billie. You are in the right place. :)

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Nice to meet you, Billie. You are in the right place. :)

Yes Billie you are in the right place and you will learn here that doctors don't know everything.

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Hi Billie....

I am glad you found us! There's a bunch of really great, supportive people on here who are extremely knowledgeable not only about celiac, but related disorders also. Lots of us have numerous autoimmune disorders (they tend to come in clusters....).

Our motto here is there is no such thing as a silly question. Anything you want to ask, just fire away!

Welcome to the family!

Karen

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Welcome! I think you will find that this forum has some of the best, most kind, caring and knowledgeable people you will find. When I was in the process of being diagnosed, I honestly don't know what I would have done without them. I met my best friends through this forum.

Please know that you are NOT alone . . . and that you are in glad company. Just watch out during the full moon . . . . . . . . . . :lol::ph34r:

Lynne

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. Just watch out during the full moon . . . . . . . . . . :lol::ph34r:

Lynne

Hey! I resemble that remark!!!!! LMAO!

:lol::P

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Thank You all for your warm welcome. Like I said I AM SO GLAD I FOUND THIS SITE!!

One day at at time, One new item tried at a time, and One new person a day told about this disease!

That's my new motto.

Good Luck to You All and God Bless Each One of you for a Healthier tomorrow.

Billie

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Billie,

Welcome to the board. You and I have a lot in common. I am just a few years older then you, but our weight is about the same. I weigh about 77 as I write this. I have been this weight for years. I can't gain either. At least I can claim to be the smallest in my whole family. The only problem I have being small is I have osteoprosis and I working on fixing that.

Susan :D

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Billie,

Welcome to the board. You and I have a lot in common. I am just a few years older then you, but our weight is about the same. I weigh about 77 as I write this. I have been this weight for years. I can't gain either. At least I can claim to be the smallest in my whole family. The only problem I have being small is I have osteoprosis and I working on fixing that.

Susan :D

Hi Susan,

How low was your weight when you were first diagnosed? Did you lose more after going on the gluten free diet? Do you have trouble being able to eat enough calories in a day? My dietician wants me to eat 1800-2200 calories a day, right now I'm averaging 1500-1600. Just not hungry. But I am also some what of a picky eater.

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Billie

I have not been diagnosed. In April 2006 I had my blood drawn for 96 food sensitivities. I was positive for 21 different foods including wheat and gluten. I went gluten free after receiving these results. Since I have had a few reactions from sometimes unknown ingredients I am afraid to try any foods that I am sensitive to because I don't like being dizzy.

You ask about my weight it has remained steady for years. I got pregnant when I was 73 lb. My top weight 9 months pregnant was 92 lb. (18 years ago now). I did see a nutritionist to find a healthy way to gain weight and now that I am gluten free I am up to about 77. It has taken me two years just to gain the four pounds. I cheer at any weight I gain. My clothes are finally getting a little snug. :D I eat about 1700 calories a day. I keep track of the foods and calories on mypyramidtracker.gov

Susan

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Billie

I have not been diagnosed. In April 2006 I had my blood drawn for 96 food sensitivities. I was positive for 21 different foods including wheat and gluten. I went gluten free after receiving these results. Since I have had a few reactions from sometimes unknown ingredients I am afraid to try any foods that I am sensitive to because I don't like being dizzy.

You ask about my weight it has remained steady for years. I got pregnant when I was 73 lb. My top weight 9 months pregnant was 92 lb. (18 years ago now). I did see a nutritionist to find a healthy way to gain weight and now that I am gluten free I am up to about 77. It has taken me two years just to gain the four pounds. I cheer at any weight I gain. My clothes are finally getting a little snug. :D I eat about 1700 calories a day. I keep track of the foods and calories on mypyramidtracker.gov

Susan

Susan,

Guess I hadn't thought about being tested for other food allergies, being able to be done through blood test. That would sure be a lot better than finding out by eating the wrong things and ending up sick.

I weighed 115# when I checked into the hospital to have our daughter, left hospital weighing 98 and have never gained above since. (33 yrs ago)

I've been keeping track of my foods and weight on calorie-count.com. It looks like it does a lot of the same thing your website does, such as keeping track of activities etc..

Billie

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Hi! Not sure how or where to start. I am a 54 year old female that has just recently been diagnosed with Celiac Sprue, Diverticulitis, Gastritis, and Lactose Intolerant. I am currently 5
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Hi! Not sure how or where to start. I am a 54 year old female that has just recently been diagnosed with Celiac Sprue, Diverticulitis, Gastritis, and Lactose Intolerant. I am currently 5
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Hello,

I too am new here- just found out on 9-11, My story goes way back that it all starts to make some sort of understanding to it... meaning that I had so many things wrong with me that I simply didn't want to complain to anyone anymore and I really just thought I wanted to end it all. I can truly understand what you are dealing with and that if you ever need to just vent please do so - I hardly ever sleep and I am always (shall we say Upshucking) so I thank you for your story and I will share mine with you as well.

EMAIL ME AT MRSGRAZIANO@AOL.COM I would love to talk to someone that understands the emotions that go with this. I am here for you-24/7 I Understand You. much love and I hope you are feeling ok now that you know YOU ARE NOT GOING CRAZY!!

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    • Ugh!  So, you have early stages of celiac disease and that was after being gluten light?  It is a shame that your doctor is not comfortable about giving you a formal diagnosis because you don't have enough damage!  Time for a new GI.  You can also as for another pathologist to read your biopsies, but seriously....... Have a conversation with your current doctor about the reasons why he is hesitating.  He would rather you continue to become more ill or improve your health?   Are you going to be scarred for life with a celiac disease diagnosis? Maybe he is one of those people who think it is impossible to live with wheat, rye or barley!   I don't get it! 
    • Thanks for the comments. With Dr. Google, I have seen mast cell disorder pop up.  It seems like I need to eliminate some basics before heading in that direction. So, another question...is it possible that symptoms of celiac need time to "build up" over time? For instance,  I started reintroducing gluten and coffee last week to prepare for my GI appt.  However, nothing really seemed to happen except a little knee crankyness (which I can easily attribute to hiking).  Yet, yesterday I had a huge bagel at work, had itchy forearms, and then had two huge hives appear later.  Today, I had another bagel and in a few hours I had a few red fingers that were itchy and numb feeling in the tips.   I know histamine intolerance is a possibility, but wouldn't that show up as an extremely large hive with my allergy skin test? Also, I had to go into work today and yesterday. I'm wondering if that environment could contribute to the issue (I'm a high school teacher).  
    • Hi Fidel, The original poster hasn't been on the site for several years, so you may not get a response from them. But welcome to the forum!  
    • False positive or negative?  I was diagnosed with Coeliac and the more rare Dermatitis Herpetiforma.  I know that symptoms like youre describing could be a whole variety of conditions.  I have a friend who has ulcerative colitis whose symptoms are similar to what you are describing.  You could have ulcers, but keeping it real i have to say youre also describing opiate withdrawl.  So if youve been on pain killers prescibed or not that could be it also.  Best of luck
    • Hi Megan, Regarding dairy, celiac disease damages the villi that make the lactase enzyme that digests milk sugar (lactose).  So sometimes people can't digest dairy well when they first start the gluten-free diet.   Over time that may change as you heal.  The ability to digest dairy doesn't always come back, but it may. Throwing up can be caused by excess gas in the stomach.  That's pretty common when starting the diet.  Sugar and carbs will make it worse.  Udi's bagels are made of various flours so they are full of carbs.  Carbs are turned into sugar in the body and that feeds the bacteria, hence the gas. You could be reacting to various foods, so eliminating one problem food is not going to fix all the problems.  I think it would be more helpful to start by following the tips in my earlier post than to  try a full fledged elimination diet at this point.  Elimination diets can take a while to do. If you can stick to eating meats, vegetables, nuts for now that is a good thing.  No processed foods (like Udi's) or other baked goods.  This is probably the fastest way to get better and learn what is safe to eat.  Once you are feeling better for a few weeks then you can try adding in one new food a week and see how it goes.  The gluten-free diet is a lifetime commitment so you may as well start out right and take your time.  Whole foods are a good way to go at the beginning.  If you cook your own food you know what is in it.  That's important to know for us.  Avoiding any processed food with more than 3 ingredients is also good.  The fewer ingredients you are eating the simpler it is to figure out a problem. I wouldn't worry about the idea of the throwing up thing making you react to dairy.  Celiac is known to cause a problem with dairy intolerance.  
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