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I Need Help

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Hello,
 
I'm Keven, 23 years old, from Canada.
I've been diagnosed with Type 1 Diabetes last year... And now recently with celiac disease.
 
I've been gluten-free for 2 months now, and it really starting to get me. I just feel powerless, I need someone to talk to about this, someone in the same situation as me. I don't know anyone with diabetes or celiac.
 
After 2 months of treatment, I still don't see any differences.
I'm loosing weight and the doctors seems worried. (My weight is very below the weight I should have)
I'm scared of going to see a doctor and that they will discover some other disease that won't solve anything.
I feel like everything is going against me. I feel like I'm dying and I'm scared. I have that feeling that I won't live that long.
 
I'm really fed up of being told that I look pale or not healthy because of my weight and body.
I'm fed up of going to the hospital, wait forever, and get targeted by people that wonders why I'm here.
At the hospital, I feel like I'm not at my place, I shouldn't be here. I'm only 23 years old.
 
I was very optimistic that going gluten-free would fix all that, but now I'm kinda down and desperate.
 
I realize that this was pretty dark, I'm really not like that in real life, I just had to share my emotions & feelings.
I just need some support, thanks.
 
Keven

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Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8):


Keven,

Welcome to the forum! You are not alone!

Read some of these links about what to eat and cross contamination issues:

https://www.celiac.com/articles.html/the-gluten-free-diet-101-a-beginners-guide-to-going-gluten-free-r1640/

https://www.celiac.com/forums/topic/91878-newbie-info-101/

Being armed with information will make things so much easier. Keep in mind that you were probably undiagnosed with celiac disease for a while. It takes lots of time to heal and everyone has a different healing rate. You are young, so healing should occur more quickly than in someone much older. Avoiding gluten is critical!

I have diabetes. I am not typed, but after a year and a half, I think that I have Type 2. I have not pushed for an GAD antibodies test because I barely tested positve on my celiac panel. My doc has me track my blood glucose via my meter and I am doing fine so far. I manage my diabetes now just by diet. Is your diabetes well controlled?

You should feel better soon. You just need a little more time and nourishing food.


Non-functioning Gall bladder Removal Surgery 2005

Diagnosed via Blood Test and Endoscopy: March 2013

Hashimoto's Thyroiditis -- Stable 2014

Anemia -- Resolved

Fractures (vertebrae): June 2013

Osteopenia/osteoporosis -- June 2013

Allergies and Food Intolerances

Diabetes -- January 2014

Celiac.com - Celiac Disease Board Moderator

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Keven it can take some time to heal. Some of us here lived undiagnosed for decades and the damage was severe but we recovered and so will you. It is hard when you don't have people in your life that have to deal with the same things you are health wise but now you have us. 

If you have not been eating whole unprocessed foods you need to start now. Many young folks have never learned to cook which can make things seem really hard in the beginning. We can help you through that. Simple things like baked chicken, steak, pork chops etc are really easy. There are also celiacs on the board who are also diabetic and if you ask questions of them they will be able to help you navigate the combination of gluten free and eating for diabetes. I don't know a lot about diabetes but when I was falsely diagnosed as a diabetic I found a book on the glycemic index for foods that was helpful.

I know it is hard but ask any questions you need and know that we will help in any way we can. 


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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hey, keven, my son was diagnosed type 1 'betes' when he was 19 and away at school - out of the blue, seemingly, because nobody else in our family ever had diabetes.  what we didn't know, until i was diagnosed with celiac, was that it's the same gene that makes both of these things possible :(  he is 29 now, but it has been a rocky road for him, i'm not gonna lie, but it's do-able.  he has since married a beautiful young woman who, ironically, has thyroid problems.  so - they watch their diet carefully, and have switched to gluten free eating <which is beneficial for her thyroid condition, too, and he has decided that he probably has a problem with gluten as well, even though he's never been tested)  it's lower carbs being gluten free, so, better for his diabetes.  he has also been hitting the gym, eating lots of protein, and getting to bed at a regular time.  once you get used to your 'new normal' i'm sure you will get better at managing.  it feels like alot, but give it a minute.  make your necessary changes - and even though it doesn't feel like a blessing, it sure beats going through a large portion of your life not knowing what is wrong with you.  you can treat your celiac before it does further damage.  i was lucky to have not been killed by malnutrition and i felt so crappy all the time, tired, constant headache, etc...  almost 5 years later and my immune system is pretty much bulletproof.  i've not been sick in, like, 4 years, not even a sniffle (and i am surrounded constantly with germy kids, lolz, they bring home everything from grade school !! )  from a person who had pneumonia every year without fail, i can tell you to hang in there, it's totally worth it.  good luck and welcome to the forum :)  and here's a ((hug)) or two ((hug))


arlene

misdiagnosed for 25 years!
just as i was getting my affairs in order to die of malnutrition...
gluten free 7/2010
blood test negative
celiac confirmed by endoscopy 9/2010

 

only YOU can prevent forest fires - smokey t. bear

 

have a nice day :)

Celiac.com - Celiac Disease Board Moderator

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Hello keven,

I'm Eloise and 14.Im not so very good with words rigght now but wanted to try and writ somthing.

I no that you are scared but I think that you will be okay too once you give it a little bit more time like the lady said.

I no what hosspitals are like they are not nice at all.I no what it's like to be sick everey day of your life not nice either but you learn to acept it and realise that allot of people are worse out there.

When I was born the doctors tolld my parents i would be lucky to see age 12.I have cystic fibrosis.Im 14 now and well they were wrong and I'm hoping with two of my sisters in heaven now that they'll be abel to giv me some of the years that they lost and maybe the doctors will find me a lung when I need it.

When life gives you something that makes you feel afraid that's when life gives you a chance to be brave.Thats what the poster says on the bacck of my door.

Be brave keven.One day at a time.Thats what I do.Thats what my sisters did too.

You know, Eloise, every time you post here you just keep on impressing the hell out of me!  You are guts, grace and dignity all rolled into one nice package.  Keep up that fighting spirit and I love that poster on the back of your door!  :)

 

Kevin.........my older brother, who turned 60 this year, has had Type 1 diabetes for many, many years.  I also suspect he has Celiac too but he is in denial about it.  You are lucky that they caught both diseases at such a young age because it may just prevent you from having worse problems as you age.  I know this is hard and I certainly share your loathing of hospitals because they are no place for young people but please give this more time and be patient.  You will feel better down the road and life will be much better for you!  It takes time for a Celiac to heal, especially when you have diabetes also.  I am extremely fair skinned and thin, like you, and I remember all too well the ignorant remarks from people about my skin tone and weight.  I have gained 20 pounds since being diagnosed 10 years ago, although I am still fair skinned.  The weight will come for you and you will feel better but it doesn't happen overnight.  Hang in there and visit here often when the need to rant comes on.....we totally understand your frustration!

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I'm from Canada too, Keven. I know how hard hospital waits and busy doctors can be to deal with. The good news is that it's free; the bad news is that nobody has a lot of time for you! And they tend to give folks a hard time about weight loss without a lot of good solutions.

 

Adding to everyone's voices: it takes time to heal. The first little while is hard. It gets easier. Remember that your GI tract is healing by staying gluten-free, this is GOOD! But it takes some time for the symptoms to go away.

 

Be careful about processed foods—it's easy to miss products that have gluten in them. For example, soy sauce and worcestershire sauce are no good, to name just two. Read labels carefully and look around this forum for advice.

 

It's easy to develop health anxiety when you get all this stuff thrown at you. That can make you feel like things are out of control, you're going to die, etc. It's a real condition, and it's not your fault. You're not alone! Anxiety can also be a symptom of celiac disease before your system heals up. You might want to consult your provincial psychiatric services and find someone to talk to if worrying about your health is taking up a lot of time. Professionals can really help with that. There's lots and lots of old people with both celiac disease and diabetes who are enjoying retirement and ripe old age! You're going to be one of them. Stay gluten-free, keep your chin up and look forward to feeling better soon.

 

Finally, as much as it sucks to deal with hospitals, get a follow-up visit within a year to check on how you're doing, apart from your symptoms. It's important to confirm that you're eating completely gluten-free and things are looking good inside ;)


33 y/o male

Celiac and proud since 2007 - endoscopy/biopsy

Confirmed HLA genes 2014

Strict gluten-free diet since diagnosis

Post-eating nausea despite diet began Aug 2014

 

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I was surprised that that thing is so sensitive that you can't even share a toaster with someone.
 
Can you give me an idea of how long it takes to heal?
 
My diabetes is pretty well controlled, I get 4 shots of insuline a day.
 
Hello Eloise, you're one hell of a strong young woman! 
I have a cousin that also have cystic fibrosis, that thing is nasty.
He's 20 now and pretty good. He has a short life expectancy, but it's one of the most couragious person I know.
Always smiling. So what you're saying is really getting me. :)
 
It's really hard to be patient about your health.
 
Yeah everytime I go to the hospital I get frustrated of the waiting for the very short time you have with a doctor...
 
It's pretty weird I don't think I have any symptoms, the only reason why the found out about celiac was because they
regularly check my blood because of diabetes. I really don't know for sure if I don't get contamined by gluten accidently, I'm completely blind.
 
It's not like I'm always like that everytime, it just happens sometimes, I think about it and it makes me sad.
Does it still happens to you? Do you still have those moments where you're down and frustrated? It's really hard to accept, it's like I don't what to accept it, I want my normal life back...
 
Thanks :)

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Healing time? Can not say since everyone is different depending on the extent of their damage and the gluten-free diet learning curve. Maybe months for a young person and more for an older person.

Patience is hard even when you are old! :)

It appears that celiac disease and type 1 diabetes are linked genetically. If I recall, about 10% of type1 diabetics can develop celiac disease (and vice versa). You are lucky that the doctors now are checking all type 1 diabetics for celiac disease. So many of us have to wait decades before it is diagnosed.

There is a grieving period so you have every right to feel mad and sad! Things will get better though!

Right now, educating yourself completely about both celiac disease and type 1 diabetes will help you immensely and keep you on the diet.

Take care! I am sure everyone else will have great ideas that will help you!


Non-functioning Gall bladder Removal Surgery 2005

Diagnosed via Blood Test and Endoscopy: March 2013

Hashimoto's Thyroiditis -- Stable 2014

Anemia -- Resolved

Fractures (vertebrae): June 2013

Osteopenia/osteoporosis -- June 2013

Allergies and Food Intolerances

Diabetes -- January 2014

Celiac.com - Celiac Disease Board Moderator

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Kevin, I am not diabetic but I can tell you that it took me 2.5 years before I began to gain some weight back. 5'2" & I was down to 93 & at times the scale would read 91. I kept weighing & weighing & weighing & always the same low result so I got disgusted & quit weighing myself for about 4 months. Then my jeans began to feel a bit tighter. Hopped on the scale & I was up! Hit 105 & then I hit 110!! Yaaaaaaaaaaaaaayyyyyyyyyyyyyyyyyyyy! It will happen for you too. Your gut has to heal first before you will put on weight. Give it time.


Gluten free Dec. 2011
Dermatitis Herpetiformis

Reynaud's October 2018

Rheumatoid Arthritis October 2018

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