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#1 tryme

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Posted 07 October 2013 - 02:23 PM

Hi

I am newly diagnosed with celiac. My endoscopy results show extensive damage. My doctor sent me home saying I need to be on gluten free diet and that I am going to face complications such as cancer and lupus if I don't smarten up. I came home crying not knowing what the hell was going on .

From what I have researched so far my self ( and thanks to information on this forum) that the cause of my chronic fatigue, low mood and severe anemia is my celiac.

From what I can precieve from how my doctor told me, I am ver scared of this prognosis. I don't know what to do and where to start.

I am feeling really down. I did read the newbie information (which I found really helpfull) but I don't k ow if I will be able to follow strict gluten free diet.

My doctor even webt on to say that I might not be able to have children let alone them being healthy. My husband and I have just bought a house and he is already planning the baby room. I don't know how to tell him what I wad told.
I will really appreciate some positive words because all I fell like foing right now is to roll into a ball and not get out of my bed ; (
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#2 psawyer

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Posted 07 October 2013 - 02:36 PM

Hi, and welcome aboard.

I was diagnosed in 2000 with extensive damage to my villi. I had just turned 46 at the time, and was very ill.

Thirteen years later, I have healed. There are some things that can't be undone, such as poor tooth enamel, but like most of us, a near complete recovery is possible by strictly following the diet.

Fertility problems in untreated celiac disease are common, but once you have healed the chances of a successful pregnancy are no different than those without celiac disease. There is a higher than average risk that your child will develop celiac disease, as there is a genetic factor. But not everyone with the genes develops the disease.

After years of getting progressively sicker, my diagnosis was good news. I had an answer and could begin to recover.

If you have damage as described, expect that the healing process will take time. Factors include the extent of the damage, and age--older people take longer to heal. I felt better quickly, but noticeable symptoms continued for 3-4 months, with full recovery taking much longer.
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Peter
Diagnosis by biopsy of practically non-existent villi; gluten-free since July 2000.
Type 1 (autoimmune) diabetes diagnosed in March 1986
Markham, Ontario (borders on Toronto)

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#3 powerofpositivethinking

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Posted 07 October 2013 - 02:36 PM

Welcome  :)

 

You can do this!!!

 

At first it can be a bit overwhelming, but you came to the right place.  I think the sooner you talk about this with your husband the better.  Will it help to write things down before talking to him?  

 

Celiac disease can cause infertility.  In fact a great book you may want to check out is Real Life with Celiac Disease by Melinda Dennis.  It talks about that if a women has unexplained fertility, she should automatically be tested for celiac, but unfortunately not all fertility specialists know that.  Some people could have saved thousands of dollars on IVF if only they would have been tested for celiac and cut gluten out of their diet.  

 

Is it overwhelming at first...yes, but it's nothing you can't handle.  Stick to naturally gluten free foods like fruits and veggies and lean meats.  Others will be along to offer suggestions, but just know you're not alone  :)

 

 

 

 

Hi

I am newly diagnosed with celiac. My endoscopy results show extensive damage. My doctor sent me home saying I need to be on gluten free diet and that I am going to face complications such as cancer and lupus if I don't smarten up. I came home crying not knowing what the hell was going on .

From what I have researched so far my self ( and thanks to information on this forum) that the cause of my chronic fatigue, low mood and severe anemia is my celiac.

From what I can precieve from how my doctor told me, I am ver scared of this prognosis. I don't know what to do and where to start.

I am feeling really down. I did read the newbie information (which I found really helpfull) but I don't k ow if I will be able to follow strict gluten free diet.

My doctor even webt on to say that I might not be able to have children let alone them being healthy. My husband and I have just bought a house and he is already planning the baby room. I don't know how to tell him what I wad told.
I will really appreciate some positive words because all I fell like foing right now is to roll into a ball and not get out of my bed ; (


  • 0

Diagnosed with celiac disease, fat malabsorption, severe pancreatic insufficiency (taking Creon) and vitamin K and D deficiency

Thankful for all the help I've received from members on this board!

Happy to have answers  :) 


#4 bartfull

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Posted 07 October 2013 - 02:49 PM

You have come to the right place! What your doctor told you is true - up to a point. You DO run the risk of all sorts of nasty "complications" like cancer and lupus and other autoimmune diseases IF you don't stick to a gluten-free diet. And you MAY suffer fertility problems and miscarriages IF you don't stick to the gluten-free diet.

 

But the good news is, if you DO stick to the gluten-free diet, chances are you won't develop other problems, and chances are you can pump out as many children as you want. :o  :lol:

 

I'm glad you read the newbie thread. It's a great place to start. You truly do need to be careful about cross-contamination. It can all seem overwhelming at first, but honestly, there will come a time when you won't even think about it. You will likely go through a period of withdrawal -  and it is a very real, physical withdrawal. You may get headaches and mood swings and constant hunger for a couple of weeks. Then it will settle down.

 

You may also have a few meltdowns at the grocery store. That's when you come here and cry on our shoulders. Between all of us here, we have MILES of shoulders and we're more than glad to comfort you. But there really are SO many foods that are gluten-free naturally - meats, fresh veggies, fresh fruit, rice, potatoes, sweet potatoes, even most potato chips and ice creams. And even though it's best not to go hog wild buying gluten-free substitutes at first, when it comes time for bread, there are some really good ones out there such as Udi's and CANYON BAKEHOUSE. Yeah, they're expensive, but that'll keep you from overdoing it - they are really fattening and have hardly any nutrition. But they make a nice treat when you just feel like having a sandwich.

 

So please, DO go COMPLETELY gluten-free, and please, lean on us here. We're all in the same boat, and those of us who have been at it for a while are living better lives than we ever have. We eat healthier, we feel better, and we are happier, with more energy and MUCH more positive outlooks than we had before.

 

You're going to be fine. Better than fine. And you will live a normal life with children and whatever else you want because you will have the good health with which to pursue these things. :)


  • 1

gluten-free since June, 2011

Can't eat soy, corn, or foods high in salicylates.

Nightshades now seem to bother me too.

 

BUT I CAN STILL PLAY MY GUITAR AND THAT"S ALL THAT MATTERS!

 


#5 nvsmom

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Posted 07 October 2013 - 05:49 PM

(Hugs) Welcome to the forum.

 

Your doctor was incredibly insensitive. It sounds like he was trying scare tactics on you so you would be more likely to go gluten-free.  It is true that continuing to eat gluten can cause inflammation that can trigger other autoimmune disorders but it is not a guarantee by a long shot. Same thing with infertility; it can cause problems but it doesn't happen in the majority of the cases - I had 3 kids in 5 years while living with untreated hypothyroidism and celiac disease... can't say I felt well doing it but I had no problems at all.   ;)

 

To better your health, you might want to get your nutrient levels tested. celiacs are often low in potassium, magnesium, calcium, A, B's, D, ferritin, iron, zinc, and copper. Thyroid problems are common so you might ask for a TSH free T4 and free T3 ttests, and TPO Ab. Get copies of all your labs so you can keep track of it.

 

Give yourself time to feel better too. It can takes months to years to heal up and feel well again. Patience is key with this disease.  Hang in there.


  • 1
Nicole Posted Image

"Acceptance is the key to happiness."

ITP - 1993
Celiac - June, 2012
Hypothyroid - August, 2012

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#6 GF Lover

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Posted 08 October 2013 - 05:19 AM

Welcome to the Forum Hun,

 

It's a new day so roll yourself out of bed and start your new adventure of great health.  I'm going to assume that your Hubs is going gluten free with you, it will make it easier.  Read through the forum here.  Start getting your kitchen in shape.  Plan on eating in while you get the hang of eating gluten free.  Restaurants are cross-contamination havens and you need to heal right now.  This site has plenty of meal ideas so delve in.  It is wonderful that you have found out you have Celiac now and not go through countless years of poor health like so many of us here have.  And don't worry, you will be having babies in no time!! 

 

All the best.

 

Colleen


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#7 1desperateladysaved

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Posted 08 October 2013 - 07:43 AM

Hi lvlearning

 

! I had 30 years of untreated symptoms.  During that time I had 5 children. Now, I am gluten free, I am feeling better and my nutrient levels have gone up.   One must follow 100% gluten free diet, but villi damage is reversible.  My Functional Medicine nurse says so, and besides I have proved it.

 

  I agree that checking your nutrient levels would be good.  When you know which nutrients are low,  you can make sure to get plenty of the by using quality supplements. You will need them to help you heal and nourish.

 

I hope to hear soon your improvements as you go gluten free.  Get well soon,

 

D


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#8 Pegleg84

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Posted 08 October 2013 - 09:23 AM

Welcome to the Forum! This is by far the best resource I know. We're all here for you.

All you really need to tell your husband is that you have to be 100% gluten free to reverse the damage already done and stay healthy. That way you can avoid all the possible future complications, and just feel better in general. If you just moved into a new place, what better time to go through the kitchen and get rid of whatever you can't eat, as well as decide what dishes and such need to be replaced. If your husband isn't willing to go gluten-free with you (ask him to give it a shot. you never know), then designate a part of the counter for gluteny things and demand he keep it spotless. Crumbs are bad! (also, he must brush his teeth before kisses).

 

Yep, it's tough at first, but once you start feeling better you'll know it's worth it. And it might seem impossible to go 100% gluten-free, and yes, even the strictest of us run into problems on occasion, but the harder you try at the beginning, the faster you'll heal and you'll be a pro in no time.

 

Once you do have kids, you'll have all the energy you need for them. They have a higher risk of developing celiac themselves, but if they also eat gluten-free or are diagnosed at an early age, that avoids the health problems.

 

You can do this!! We're here for you.

Happy healing!


  • 0

~ Be a light unto yourself. ~ - The Buddha

- Gluten-free since March 2009 (not officially diagnosed, but most likely Celiac). Symptoms have greatly improved or disappeared since.
- Soy intolerant. Dairy free (likely casein intolerant). Problems with eggs, quinoa, brown rice

- mild gastritis seen on endoscopy Oct 2012. Not sure if healed or not.
- Family members with Celiac: Mother, sister, aunt on mother's side, aunt and uncle on father's side, more being diagnosed every year.


#9 kareng

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Posted 08 October 2013 - 09:29 AM

Sounds like the doctor wanted to make sure you know that Celiac is serious and you really need to follow the diet.  Most of these risks go away if you are gluten-free.  The anemia, fatigue, etc should go away after a while gluten-free.  Once you are healed, your intestines will be able to absorb the iron, vit D, etc that you need and that will improve the anemia (which is one cause of the tiredness), moods, fertility,  etc.

 

 

http://www.curecelia...er-get-pregnant

 

http://www.curecelia...-a-greater-risk


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#10 tryme

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Posted 08 October 2013 - 11:34 AM

Thank you so much everyone for your positive words, encouragement and all the information. I really panicked after hearing the black and white consequeses from my doctor. But your words give me a lot of hope.
I guess I needed cry and get this out of my system. I was able to talk to my hubby and we are both going gluten free.
And yes you guys are right. I need to look at this as a blessing in disguise because now I have a chance to decrease the chance of preventing all the complications.
This is going to be really hard but I feel I am at the right place where I can get the guidance from all of you.

I have packed up all the gluteny food in my house and will drop it off at the food bank. I am going to try my best to start with whole foods and limit the processed foods as much as possible.

This is a huge learning curve but I need to do this like you all did. I just hope I stay strong through this.

I am really thankfull to all of you guys and the information that is available here for people with celiac. Hopefully you guys will continue to help me as I move forward.
Thank you!
  • 1

Diagnosed & Gluten free- Oct, 2013

 

"Nothing is impossible, the word itself says 'I'm possible' " B)


#11 w8in4dave

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Posted 08 October 2013 - 06:29 PM

Ohh sweetie!! You will stay strong!! It will be a learning curve! But believe me!! If you get accidentally Glutened you will know it and never want to go there again!! You can do it!! Your hubbs is on your side! So there is the both of you!! You can do it!! It isn't as hard as you think it is!! good luck!! Look for fresh foods not processed!! :) Good luck sweetie!! 


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#12 tryme

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Posted 10 October 2013 - 11:32 AM

Thanks w8in4dave for your kind words!

I am now gluten free for few days. I have stopped processed sugar (I do use smal amounts of honey), caffiene, dairy, corn, and soy (just to be caucious if I am intolerant to them. Will try to introduce these slowly after 2-3 months of healing) . But I have been experiencing awefull migrain headaches, and I feel really tired all the time. I am having intense mood swings that I am scared to be around people. I did not tjink the withdrawal symptoms could be so strong.

I am on a multivitamin and eat lots of salads and fruuts and legumes. But I still have some bloating. My other GI symptons have completely disappeared. Not sure if I should give up legumes but theyvare a realy good source of protein for me

Did anyone else experience similar symptons? How long these last? Is there a natural way to get rid of the headaches? I have tried amber neclace and lots of water but nothing helped. And I do mot want to take any NSAIDS?

Any comments or suggestions are welcome.

Thank you.
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Diagnosed & Gluten free- Oct, 2013

 

"Nothing is impossible, the word itself says 'I'm possible' " B)


#13 Mesadora

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Posted 10 October 2013 - 05:51 PM

You have come to the right place! What your doctor told you is true - up to a point. You DO run the risk of all sorts of nasty "complications" like cancer and lupus and other autoimmune diseases IF you don't stick to a gluten-free diet. And you MAY suffer fertility problems and miscarriages IF you don't stick to the gluten-free diet.
 
But the good news is, if you DO stick to the gluten-free diet, chances are you won't develop other problems, and chances are you can pump out as many children as you want. :o  :lol:
 
I'm glad you read the newbie thread. It's a great place to start. You truly do need to be careful about cross-contamination. It can all seem overwhelming at first, but honestly, there will come a time when you won't even think about it. You will likely go through a period of withdrawal -  and it is a very real, physical withdrawal. You may get headaches and mood swings and constant hunger for a couple of weeks. Then it will settle down.
 
You may also have a few meltdowns at the grocery store. That's when you come here and cry on our shoulders. Between all of us here, we have MILES of shoulders and we're more than glad to comfort you. But there really are SO many foods that are gluten-free naturally - meats, fresh veggies, fresh fruit, rice, potatoes, sweet potatoes, even most potato chips and ice creams. And even though it's best not to go hog wild buying gluten-free substitutes at first, when it comes time for bread, there are some really good ones out there such as Udi's and CANYON BAKEHOUSE. Yeah, they're expensive, but that'll keep you from overdoing it - they are really fattening and have hardly any nutrition. But they make a nice treat when you just feel like having a sandwich.
 
So please, DO go COMPLETELY gluten-free, and please, lean on us here. We're all in the same boat, and those of us who have been at it for a while are living better lives than we ever have. We eat healthier, we feel better, and we are happier, with more energy and MUCH more positive outlooks than we had before.
 
You're going to be fine. Better than fine. And you will live a normal life with children and whatever else you want because you will have the good health with which to pursue these things. :)



Hello my name is Anne
I too am new to this whole life of Gluten free. I wanted to say something that I have found to be completely true. Going to the grocery store ends up becoming a mental breakdown for me. I unfortunately have NOT turned my house over into gluten free and it's become so challenging that I have suffered nutrition. My levels went from 98 to a 8 in 6 weeks. My doctor still says this is way to high and the reason I am so tired is because of this. I have heard my levels should be below a 4 so I am continually trying. I basically was told that I had without a doubt celiac and to look it up and don't eat gluten. Then I was sent on my way. It's been since the end of July and I am still trying to figure this whole thing out. I commented on your post specially because of the grocery store comment. Today specially I went to the store and walked around on circles to finally putting some udis bread in my cart and left. I actually cried from frustration. I just resist the change and sometimes feel as if it isn't fair. I however know this is being stupidly selfish and I can conquer this just like I conquered breaking my neck and the possibilities of never walking again. I wanted to thank I for your reply to the poster. It not onky helped her. But it helped me too. Thanks
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#14 kareng

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Posted 10 October 2013 - 05:55 PM

I don't know what test that was, but to go that dramatically down in 6 weeks if it was a TTG test, is AMAZING! Here's a little secret your doctor apparently doesn't know. antibodies levels can keep rising for a while after you eliminate gluten.
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