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Introduction And Hello


sknisley22

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sknisley22 Newbie

Hi,

My name is Stephanie, and I just decided to join today. I won't go into my lifelong struggles with celiac, but I sure wish doctors would have discovered it sooner. I had so many symptoms pointing right at it, and no one thought to check for it. I even had a doctor this past year tell me I was probably making everything up in my head because I was so stressed out and didn't want to deal with my real problems...I switched doctors.

Anyway, I was diagnosed with celiac disease right before Thanksgiving (which was hard because I hated watching everyone eat food I was allowed to eat just the week before). The doctor said he knew before he even took the biopsy that it would test positive (all the villi was gone). No one around me really knows about this disease or understands it. I just got married, and even my husband thinks I'm over-reacting when I tell him I can't have just one bite of something he made or wants me to try. It's really hard sometimes to deal with this disease in a society that is so focused on food. Sometimes I'll just watch people eat and think how normal they are and wonder why I can't be normal. I have 3 siblings, and they are all fine. I also have another autoimmune disease, sarcoidosis. It's also not widely known about, at least in my area. I feel like my body just does nothing but fight itself. As soon as I get back on my feet, I'm down again with something else.

I hope as I learn more of what I can eat these feeling will go away and I'll start to feel normal again.

Anyway, back to my intro. I live in Indiana, but it's so cold here I plan to move to Texas someday!

Oh yeah, and in a couple of weeks I'll be 24!


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Guhlia Rising Star

Welcome welcome welcome! I hope that some of your other issues will resolve themselves or lessen once your body begins to heal on the gluten free diet. This forum is absolutely wonderful and it's the first place I come when I have a question. Read through some of the older posts and I'm sure you'll find a ton of invaluable information. Anyway, just wanted to say welcome!

dlp252 Apprentice

Welcome!!!!

jerseyangel Proficient

Hi Stephanie :D Welcome to the board! I'm so glad that you found us here--no need to feel alone with your Celiac any longer.

I can relate to being misdiagnosed--I have most likely had it for 20 years--but only diagnosed for a year and a half! No one ever thought to look for Celiac, and I ended up doing research on my own. I finally asked a gastroenterologist if this could be my problem. Luckily for me, he took it seriously and agreed to test.

This disease can be especially tough around the holidays--but by next year, you will be a seasonned pro! This board has tons of great recipes and cooking and baking ideas. If there's something you don't see, ask! I made a fantastic Thanksgiving dinner--all traditional foods and pumpkin pie--and all gluten-free!

Lots of people don't understand why "just a little bit *does* hurt"--they don't understand that Celiac is not an allergy, but an autoimmune disease and that when the immune systen detects a trace of the protein, it goes into attack.

A good book on the subject is "Celiac Disease--A Hidden Epidemic" by Dr. Peter Green. Maybe your husband could also read it, so he can get a better idea of what you're dealing with.

Again, welcome, and I there's anything we can do to help, just ask!

happygirl Collaborator

Well you have come to the right place! We are happy you have found us. Its frustrating that so many have stories just like yours...on the other hand, there REALLY are people who can relate and understand. Really.

I can completely relate...I was diagnosed at age 23, two months after getting married. Like life isn't already a bunch of changes right now for you, right?!!!!!!!

I am happy you have found the answer. Let us know what we can do to help. Feel free to PM me anytime you'd like.

Laura

nikki-uk Enthusiast

Hi Stephanie and glad you found us!!!

Hopefully this forum can help you in not only practicalities of the gluten-free diet but offer sympathy and understanding should you ever need it!! :D

Welcome!! :)

lonewolf Collaborator

Welcome to the board! You'll get lots of good tips and advice here - and some support that it sounds like you need. Stick around and ask lots of questions - we're happy to help!


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ElizabethN Apprentice

Welcome! This is a great place to be to find support. It is SO HARD at first, but it gets easier. I diagnosed myself more or less when I was 24 and somewhat newly married. My biggest fear was that no one would believe me because so many doctors had told me I was crazy or a hypocondriac. But guess what? Once I started feeling so much better it was obvious to everyone that gluten was the problem. Your husband will come around, it will take him awhile to get used to it but he will-especially once he sees how good you are feeling without gluten! Go to the library and check out Dangerous Grains and make him read it!

I have been here a little over a year, I rarely post but I find reading the board to be extremely comforting- knowing I am not the only one! And it is invaluable for tips of eating out, recipes, etc. Glad you are here!

Sillyyakdidi Apprentice

welcome! I just joined too, all the veterans on this site have been SO helpful and really make things easier. Stay strong, and don't take a bite of anything, you need to get a book on celiac, or for now go to a website like webmd and make your DH read the gory details. It is life or death!

kbtoyssni Contributor

Welcome!

angel-jd1 Community Regular

Welcome to the group. Glad you decided to join. Post often!

-Jessica :rolleyes:

Hi,

My name is Stephanie, and I just decided to join today. I won't go into my lifelong struggles with celiac, but I sure wish doctors would have discovered it sooner. I had so many symptoms pointing right at it, and no one thought to check for it. I even had a doctor this past year tell me I was probably making everything up in my head because I was so stressed out and didn't want to deal with my real problems...I switched doctors.

Anyway, I was diagnosed with celiac disease right before Thanksgiving (which was hard because I hated watching everyone eat food I was allowed to eat just the week before). The doctor said he knew before he even took the biopsy that it would test positive (all the villi was gone). No one around me really knows about this disease or understands it. I just got married, and even my husband thinks I'm over-reacting when I tell him I can't have just one bite of something he made or wants me to try. It's really hard sometimes to deal with this disease in a society that is so focused on food. Sometimes I'll just watch people eat and think how normal they are and wonder why I can't be normal. I have 3 siblings, and they are all fine. I also have another autoimmune disease, sarcoidosis. It's also not widely known about, at least in my area. I feel like my body just does nothing but fight itself. As soon as I get back on my feet, I'm down again with something else.

I hope as I learn more of what I can eat these feeling will go away and I'll start to feel normal again.

Anyway, back to my intro. I live in Indiana, but it's so cold here I plan to move to Texas someday!

Oh yeah, and in a couple of weeks I'll be 24!

Canadian Karen Community Regular

Welcome to the group!

Jump right in!

Hugs.

Karen

missy'smom Collaborator

Welcome :)

mtdawber Apprentice

Hi there, welcome to the board. I've been here about a month and I find this site a god send. Glad to have you here! :rolleyes:

tarnalberry Community Regular

Welcome!

SchnauzerMom Rookie

Welcome! This is a great place and very helpful. I haven't been here very long myself.

blueeyedmanda Community Regular

Welcome Welcome Welcome :):):):):)

Mtndog Collaborator

Welcome Stephanie! Glad you're hear. Sorry you got diagnosed the day before Thanksgiving :( but the worst is over and it only gets better from here! ;)

Yenni Enthusiast

Welcome!!!

"As soon as I get back on my feet, I'm down again with something else."

I can so relate to those words. and I know what you feel about people not understanding you can't even have a small bite of something and they think you're weird.

This is a great place. I haven't been a member for that long and things are very new to me too, but I have always felt this "warmth" from people at this place. The most welcoming board I have ever seen.

Rebecca47 Contributor

Hello Stephanie,

Welcome and you have come to the right place. I joined in Aug of 2006 and everyone here is very helpful and you will learn alot. I know I sure did and i am still learning. :rolleyes:

Remember there are no dumb questions ;). So ask about everything you need or want to know.

I know I did. :lol:

Rusla Enthusiast
Hi,

My name is Stephanie, and I just decided to join today. I won't go into my lifelong struggles with celiac, but I sure wish doctors would have discovered it sooner. I had so many symptoms pointing right at it, and no one thought to check for it. I even had a doctor this past year tell me I was probably making everything up in my head because I was so stressed out and didn't want to deal with my real problems...I switched doctors.

Anyway, I was diagnosed with celiac disease right before Thanksgiving (which was hard because I hated watching everyone eat food I was allowed to eat just the week before). The doctor said he knew before he even took the biopsy that it would test positive (all the villi was gone). No one around me really knows about this disease or understands it. I just got married, and even my husband thinks I'm over-reacting when I tell him I can't have just one bite of something he made or wants me to try. It's really hard sometimes to deal with this disease in a society that is so focused on food. Sometimes I'll just watch people eat and think how normal they are and wonder why I can't be normal. I have 3 siblings, and they are all fine. I also have another autoimmune disease, sarcoidosis. It's also not widely known about, at least in my area. I feel like my body just does nothing but fight itself. As soon as I get back on my feet, I'm down again with something else.

I hope as I learn more of what I can eat these feeling will go away and I'll start to feel normal again.

Anyway, back to my intro. I live in Indiana, but it's so cold here I plan to move to Texas someday!

Oh yeah, and in a couple of weeks I'll be 24!

Welcome to the board Stephanie and there is great help and great recipes on here because of all the awesome people. I have to say this board saved my life when I first came here.

Now, I stongly suggest that your husband come on and read some posts. If he really loves and cares for you he will and he will then know you are not over reacting. This is not a whimsical thing and a "little bit" will hurt, believe me. This is not a disease that you can play games with. This is your life and you are not alone because you have all of us and there is more out there who don't know they have it or are in the process of being diagnosed.

If family or friends say "just eat it a little bit won't hurt." Then say, "I will eat it if you let me shoot you with a canon because a little canon ball won't hurt."

olalisa Contributor

Welcome, Stephanie! You've found a great place with a wealth of information and camaradarie (I'll need spell check on THAT word)....

I know it was hard being diagnosed just before the holidays, but consider it this way--you got your first holiday season under your belt right away! It will get easier. I've been diagnosed around 9 months and feel like I'm getting the hang of it.

Stick around, you'll be glad you did :)

hey--where IS the spellcheck! Momma Goose! Help me!

Adelle Enthusiast

Welcome!!

I'm 22 and I dx'd myself about 5 months ago. I didn't go for the biopsy. I just dodnt need one more doc visit!!

Anyway I can relate to what ur going thru, it'll get better!! My husband went gluten-free too, more a show of support than anything else. Now HE feels super great and is losing weight and getting all muscley. I'm still in the process of healing (I'm just a leeetle bit green with envy). Oh well this place has been amazing. Ask ANY question. Nothing is too gross or stupid.

Welcome!

LL04 Newbie

Hello!! It's good that you made it here!

The first while is going to be tough, but ask any and all the questions that you have. Going on to the board and looking through old threads is definitely a big help!!

The most important thing for you to do first is make sure you realise yourself, how serious celiac disease is and then make sure everyone around you realises it as well. Rusla is right, your husband and any 'doubters' in your family need to be brought up to speed and be there to support you and help you. They need to learn right along with you and if it means spending a day in the forum "for loved ones of those with celiac disease" asking their own questions, then that's what they need to do.

Also know that all the advice everyone offers here results from their own experiences and the knowledge they have gained. Some of it will pertain to you and some won't. Some of it will help you personally and some won't....don't give up and don't be discouraged because soon enough you will find what works for you in your life!! :)

You're not alone, we are here for you :D

Yenni Enthusiast
Welcome!!

I'm 22 and I dx'd myself about 5 months ago. I didn't go for the biopsy. I just dodnt need one more doc visit!!

Anyway I can relate to what ur going thru, it'll get better!! My husband went gluten-free too, more a show of support than anything else. Now HE feels super great and is losing weight and getting all muscley. I'm still in the process of healing (I'm just a leeetle bit green with envy). Oh well this place has been amazing. Ask ANY question. Nothing is too gross or stupid.

Welcome!

Wow, that is cool that your husband went totally gluten free too. :)

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    • trents
      So, essentially all of the nutrition in the food we eat is absorbed through the villous lining of the small bowel. This is the section of the intestinal track that is damaged by celiac disease. This villous lining is composed of billions of finger-like projections that create a huge amount of surface area for absorbing nutrients. For the celiac person, when gluten is consumed, it triggers an autoimmune reaction in this area which, of course, generates inflammation. The antibodies connected with this inflammation is what the celiac blood tests are designed to detect but this inflammation, over time, wears down the finger-like projections of the villous lining. Of course, when this proceeds for an extended period of time, greatly reduces the absorption efficiency of the villous lining and often results in many and various nutrient deficiency-related health issues. Classic examples would be osteoporosis and iron deficiency. But there are many more. Low D3 levels is a well-known celiac-caused nutritional deficiency. So is low B12. All the B vitamins in fact. Magnesium, zinc, etc.  Celiac disease can also cause liver inflammation. You mention elevated ALP levels. Elevated liver enzymes over a period of 13 years was what led to my celiac diagnosis. Within three months of going gluten free my liver enzymes normalized. I had elevated AST and ALT. The development of sensitivities to other food proteins is very common in the celiac population. Most common cross reactive foods are dairy and oats but eggs, soy and corn are also relatively common offenders. Lactose intolerance is also common in the celiac population because of damage to the SB lining.  Eggs when they are scrambled or fried give me a gut ache. But when I poach them, they do not. The steam and heat of poaching causes a hydrolysis process that alters the protein in the egg. They don't bother me in baked goods either so I assume the same process is at work. I bought a plastic poacher on Amazon to make poaching very easy. All this to say that many of the issues you describe could be caused by celiac disease. 
    • catnapt
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    • trents
      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
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