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What To Take To Recover From Celiac? And Why Don't People Believe You?


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9 replies to this topic

#1 langone7

 
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Posted 21 January 2013 - 05:14 PM

Are there supplements to take help with celiac? Should I technically go to a GI doctor, as my regular doctor kind of just said the blood tests are positive for it and then I asked what I should do other than continue eating gluten free; she said I don't need to do anything. I assume there is something more to do?

Is a biopsy beneficial (provided that I know I am not pregnant) for know the damage? Or is that no big deal?


Secondly, why do people, i.e. family members and others tend to be annoyed, disbelieving yet humoring about celiac; as if I want to eat gluten free or I am making it up? Does anyone else have this problem?
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#2 Lisa

 
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Posted 21 January 2013 - 06:30 PM

Are there supplements to take help with celiac? Should I technically go to a GI doctor, as my regular doctor kind of just said the blood tests are positive for it and then I asked what I should do other than continue eating gluten free; she said I don't need to do anything. I assume there is something more to do?

Is a biopsy beneficial (provided that I know I am not pregnant) for know the damage? Or is that no big deal?


Secondly, why do people, i.e. family members and others tend to be annoyed, disbelieving yet humoring about celiac; as if I want to eat gluten free or I am making it up? Does anyone else have this problem?


Hi!
Welcome to the Club! I personally think it's beneficial to take a quality muli-vitamin, because as much as we may try, our diet is not always as balanced as we would wish it to be. I take a pre-natal vitamins (and way, way too old for babies :rolleyes: ), because it supplies me with folic and b-12, which I lack.

Generally, dedication to a full gluten free diet will afford you recovery. Read as much as you can here.

Some people here take probiotics, but I have read that it may or may not be beneficial.

Since you have you have already been diagnosed, as a supportive diagnose, an endo exam is not necessary. To survey the damage, an endoscopy could be informative as well as check on other associated or similar disorders. I personally feel that a base-line endoscopy exam is a good thing to do, with a history of digestive issues. Celiac Disease may not be the sole cause of all your symptoms.

Regarding family members....that's a harder question to answer. Time will be most helpful. And when they see you recover, they may understand. But remember, it's new to them as well. ;) It takes time for everyone to adjust.
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Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

#3 Takala

 
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Posted 21 January 2013 - 07:36 PM


Secondly, why do people, i.e. family members and others tend to be annoyed, disbelieving yet humoring about celiac; as if I want to eat gluten free or I am making it up?


People are just weird about food. :huh: They can't imagine themselves having to cope with the same situation. And there are certain lobbying interests which pitch certain ideas through the media to reinforce that.
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#4 1desperateladysaved

 
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Posted 21 January 2013 - 07:49 PM

I like the idea of testing nutrient levels and taking high quality supplements of nutrients you are deficient in. A case might be able to be made for taking supplements that other people with celiac need. If you have an intestinal problem you have less ability to absorb nutrients from food. As you recover you would need less.

I am sorry about other people not understanding. I was thinking today that if one says they have many dread diseases, or is hospitalized the cards, letters, and flowers fly. But if you are diagnosed with celiac, even if you are dying, you are expected to continue on as if things are normal. People just accuse me of being obsessed. Hey, since when has someone told a person with cancer which is dying, "You have responsibilities, get up and do them." Huh

Thankfully, our disease is treatable without drugs. Hopefully, as you will improve, people will come to understand. Meanwhile enjoy whatever support you do get. Do what you have to.

Get well*** My stars are the best I can do for flowers
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#5 alesusy

 
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Posted 22 January 2013 - 03:28 AM

Hi Langone

I was dx about one month ago and am not taking anything because my doctor said I would be able to absorb nutrients as my bowels would heal. Other people here are taking supplements and find they are beneficial. I don't think it can harm you, anyway.

Biopsy: I had one, it pinpointed the dx, it will serve as a future reference to check the healing, and also I hope the healing of the mild gastritis I had. It can be expensive, both the exam and the analyis they run for the biopsy, and especially if you have anesthetic which does help.

And why nobody believes you? VERY common. I live in Italy, where, perhaps due to the high consumption of pasta & pizza, we have more celiacs than anywhere else in the world: we're talking 1 people in 100 - and think of all those that have NOT been dx. The result however is that celiac disease is considered "trendy". As in "Oh, but are you sure you need to do this? It's so trendy, everybody seems to have it, I wonder whether it's possible, frankly I think it's an exaggeration. Those symptomps are so common! I'm tired all the time too! Well yes, the test says you are, but probably the test would find several things wrong with my bowels as well if I were to take it. Anyway, it cannot be FOREVER"- and so on. In other words, you're made to feel obsessive, "pull yourself together and stop complaining", or, at best, "I'm so sorry for you, but are you really sure your symptoms were THAT BAD?"

SInce symptoms can be elusive, it is easy to forget how sick you felt. Sometimes your bowels will play up - it happened to me last week but I'm not sure why - and then you feel it all again: extreme fatigue, brain fog, depression, vision problems, and of course intestinal problems. Then you think "THAT'S what I've been feeling like for months". And just wait for it to pass. I'm opening another topic righ now on how BETTER you feel after a bit. You need to be very patient with people who sound dismissive. It's useless to fight them: just smile and change the topic. If they're close to you, tell them they can judge for themselves in some month's time. People close to you can be scared by the idea you are changing. Otherwise make a mental note to cut out people who are dismissive about this...
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#6 soyjoy318

 
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Posted 22 January 2013 - 07:33 PM

My parents used to call me a hypochondriac - saying I was making everything up!! Now that I know it is Celiac - I feel so much better!!
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#7 GottaSki

 
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Posted 22 January 2013 - 10:00 PM

Time - it all takes time.

Diagnosis took 43 years
Transition took many months
Family/Friends "getting it" took a few more years
Knowledge to stay healthy - heck I am still learning!
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#8 Flaykee

 
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Posted 26 January 2013 - 08:57 AM

In the past year, my health deterioriated so bad and I had no energy to do anything and my joints ached profusely. My parents and siblings always made comments about me not coming around to visit, or being angry with me because I wasn't spending more time with my young niece. I got the sarcastic barbs about making excuses, being antisocial, lazy.

But now, since my dx, they all seem to want to understand, saying they didn't realize I was so sick. I think explaining everything to them and answering their questions makes a world of difference. When I got my diagnosis, I wanted to say "HA, see I told you I was sick!" :P

Maybe giving some reading material on the health issues that undiagnosed celiac disease and not being gluten-free can lead to can help people understand? Or even let people read about the symptoms of celiac disease, as these can be very debilitating. I think people have to be made aware that being gluten-free because of celiac disease is not a lifestyle choice, it's a medical necessity.

As for the endoscopy, that can be beneficial. I have been diagnosed celiac disease without the endo/biopsy BUT I do have an endo scheduled for June (the joys of living in rural Canada!). My doctor wants to check on villi damage but moreso for other possible damage caused by reflux and other digestive problems. So for other possible issues, yes, it can be a good thing to have.

Health and happiness to you!
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#9 jamer

 
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Posted 27 January 2013 - 11:32 AM

I have family members who are driving me crazy!! I was diagnosed after an edno on the 17th of this month. I had been studying everything I could find after the blood antibodies came back elevated. I knew celiac or not, gluten was a problem. I began explaining this to my mother, sisters, chidren, and husband who seemed to understand how serious this is. Once the biopsy results came in, my husband really seem to understand. My teenager is good at getting it. The rest of my family blows it off like it is nothing. My sister recently made a comment about after learning I'm pregnant that she will make beautiful cupcakes for my baby shower. I told her she could make whatever she wants as long as they are gluten free and she takes the time to learn about cross contamination. Her reply? "You can make whatever you want, I'm making regular for everyone else. I don't know how to make gluten free mixes, only icing." SERIOUSLY????

Maybe it's my hormones but I was mad. It's hard enough to work and live with other non celiacs who can eat all those foods I'm craving but to purposefully say that??

Today...my MIL who is staying with us for a bit (she's from overseas) decides to clean my kitchen. She takes the family toaster FULL of crumbs and dumps it on my counter. Then proceeds to take a dish cloth with water only to "clean" it up and spread all of that over the rest of the counters and table. I completely freaked out and immediately started santizing behind her. She started yelling in her language and then started crying.

I don't have the time or the energy to continually go behind her and disinfection gluten products...

So frustrating!
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*Biopsy diagnosed Celiac Disease 1/2013

*Gluten Free since January 20, 2013


#10 GottaSki

 
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Posted 27 January 2013 - 02:46 PM

Hang in there -- it does get better.

For now, you are correct -- if it hurts MIL's feelings too bad, she will learn or she will not, but your health must come first - especially with Baby on Board.

As for the shower -- I've had similar events -- I tell the host - family or not that I'll provide the cupcakes, brownies or cake myself for all to share as I would like one part of the event to include everyone -- personally I love seeing everyone make a fuss about how good my gluten-free cakes are -- a few treats and they stopped complaining about my "special diet" -- Goodness....how I dislike that term -- it is not a "diet" and we don't feel very "special" when you treat us like we are whining complainers!!!!
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)





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