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Learning About It For The First Time


J-Man

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J-Man Newbie

I never knew about this disease, and I want to learn as much as I can.

I just met a girl with Celiac, and I want to do whatever I can to make her happy.

Ultimately, I'd like to date her, but one thing at a time ;)

I got some gluten-free cookie mix, and I am going to make her up a batch of the cookies (carefully!)

I guess what I'd like to know is where I should start, as far as resources and information on what foods are safe and what foods aren't, and how we can move forward without any major foul-ups.

Who knows, I'd even consider going gluten-free (and anyone who knows me knows that'd be a big step!) because I think she's worth it.

Thanks in advance!

J


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KaitiUSA Enthusiast

Wow you are so sweet to do all that for her!

Ok well here are some things that may help:

Here is a link you can get lists of safe and forbidden foods and ingredients: https://www.celiac.com/st_main.html?p_catid=12

Here is a recent list of mainstream brands that will not hide anything even under questionable ingredients. These brands will list wheat,rye,barley,oats right on the label if they contain any. For other brands you do have to call and make sure if you see a questionable ingredient but with these you just have to check for one of those four things.

Aunt Nelly’s

Balance

Baskin Robbins

Ben&Jerry

Betty Crocker

Blue Bunny

Breyers

Campbells

Cascadian Farms

Celestial Seasonings

Country Crock

Dove

Edy’s

General Mills

Good Humor

Green Giant

Haagen Daz

Hellman’s

Hershey

Hormel

Hungry Jack

Jiffy

Klondike

Knorr

Kozy Snack

Kraft

Libby’s

Lipton

Martha White

McCormick

Nabisco

Nestle

Old El Paso

Ortega

Pillsbury

Popsicle

Post

Progresso

Russell Stover

Seneca Foods

Smucker

Stokely’s

Sunny Delight

T Marzetti

Tyson

Unilever

Wishbone

Yoplait

Zatarain’s

Frito Lay, ConAgra, and Utz also have many gluten free products however they can hide it so you have to check with each product but many are ok.

There is also a list which is 79 pages long with the gluten free status of many products, medications, foods, etc and that is very helpful.

There is also a restaurant list that is pretty nice to have for knowing what you can have at certain places.

These lists are easy to get if you want them.

When you make the cookies for her you have to make sure you use a clean bowl and clean utensils. Make sure you get any possible gluten off of it before you make them. If you use cookie sheets you may want to get a new one because knowing how alot of those sheets are that is a good way to get contamination.

Is she recently diagnosed or has she had it for a while? You should send her to this site. This site has great info and support.

PS: Forgot to add: there are many specialty gluten free products that taste really bad and it took me a while to find the good specialty items but there are great substitutes for stuff we can't have.

If you need suggestions on good brands of breads, pastas, and things like that then this is definitely the place to be too...alot of people on here know the good and bad brands

skoki-mom Explorer

Wow, you must really like this girl! She is so lucky that you are taking her condition seriously. My BF is very supportive as well and it means a lot to me.

Good tips from Katie above. As well, don't be afraid to ask her what she can have or not have, and if it's a not, just ask if there is a substitution you should get, or if you should just try something else. Likewise on restaraunts. I'd let her pick the places you go out to eat, just makes life a little easier.

Good luck to you both :)

J-Man Newbie
Wow, you must really like this girl!  She is so lucky that you are taking her condition seriously.  My BF is very supportive as well and it means a lot to me.

Good tips from Katie above.  As well, don't be afraid to ask her what she can have or not have, and if it's a not, just ask if there is a substitution you should get, or if you should just try something else.  Likewise on restaraunts.  I'd let her pick the places you go out to eat, just makes life a little easier. 

Good luck to you both :)

<{POST_SNAPBACK}>

Thank you so much for your responses. They have been VERY helpful!

As luck would have it, she may be going back to an ex. *pout* but I'll still learn all I can to be her friend at least.

I just never knew this existed!

J

Rachel--24 Collaborator

I'm pretty new to the diet myself...I'm also new to the kitchen so I cant help out too much there. Better to leave that to the more "experienced" people here.

Just wanted to say thats very sweet that you are showing interest in learning about Celiac for her. Even if she's just your friend I'm sure the gesture won't go unnoticed. :)

debmidge Rising Star

J-Man, Well sorry about that news....she doesn't know what she's missing in you. Obviously you are the best choice for her in that you care enough to keep her gluten free.

If it happens that she doesn't get back with ex & you happen to be the guy she wants, then keep in mind to take care of you going gluten free so that when ahem, smooching might happen, you won't transfer any gluten to her inadvertently.

My husband has celiac - we've been married 26 years, gluten free for last two, and the above was a topic of someone else's post on this board...so I had to learn it too.

Best wishes.

D

J-Man Newbie
J-Man,  Well sorry about that news....she doesn't know what she's missing in you.  Obviously you are the best choice for her in that you care enough to keep her gluten free.   

If it happens that she doesn't get back with ex  & you happen to be the guy she wants, then keep in mind to take care of you going gluten free so that when ahem, smooching might happen, you won't transfer any gluten to her inadvertently. 

My husband has celiac - we've been married 26 years, gluten free for last two, and the above was a topic of someone else's post on this board...so I had to learn it too. 

Best wishes. 

D

<{POST_SNAPBACK}>

Appreciated!

It's made me look at my own dietary intake as well, so it's really been beneficial.

J


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J-Man Newbie
Rachel

Dx'd Graves Disease 1999

Radioactive Iodine for Graves 2003

Neg. Bloodwork 10/04

gluten-free since 4/11/05

Diagnosed by Enterolab 8/15/05

Positive IgA, tTg & malabsorption

HLA-DQ1, DQ3

I couldn't help noticing, many of the members on this board seem to suffer from more than just Celiac... is it common for other ailments and disorders to join with Celiac, or is it more that Celiac was simply discovered as a result of the increased attention due to the other disease(s)?

Sorry, that was rather long-winded... did it make sense?

J

KaitiUSA Enthusiast
I couldn't help noticing, many of the members on this board seem to suffer from more than just Celiac... is it common for other ailments and disorders to join with Celiac, or is it more that Celiac was simply discovered as a result of the increased attention due to the other disease(s)?

Sorry, that was rather long-winded... did it make sense?

J

<{POST_SNAPBACK}>

If the diet is ignored many other problems will arise. Most people who have other issues is because the celiac was undiagnosed for so long and other problems then started to arise.

If the diet is ignored you are 40-100 times more likely to get cancer, diabetes, osteoporosis and other life threatening and disabling things. It also knocks an average of 10 years off of your life if not followed. The stats go back to normal after you are gluten free.

J-Man Newbie
If the diet is ignored many other problems will arise. Most people who have other issues is because the celiac was undiagnosed for so long and other problems then started to arise.

If the diet is ignored you are 40-100 times more likely to get cancer, diabetes, osteoporosis and other life threatening and disabling things. It also knocks an average of 10 years off of your life if not followed. The stats go back to normal after you are gluten free.

<{POST_SNAPBACK}>

Since you're so helpful, I'll ask you the next big question...

Before you were diagnosed, what were the signs? Are there any "typical" signs that precede being diagnosed?

Jason

(and thank you.... I baked the cookies and I've been told it's her favorite mix *cheer!*)

Guest nini

Wow Jason, you sound like such a sweetie, and a good friend to this girl!!! Hope it turns into more for ya!!!

I've been gluten-free for 2 1/2 years now, and my daughter with me. My husband recently has gone gluten-free as well because he read the book Dangerous Grains and decided that gluten wasn't good for anyone! LOL! It makes it a lot easier on me in the kitchen that's for sure.

As Kaiti said, a lot of people go undiagnosed for so long that they end up having many other complications from it... this is one of those conditions that Dr.s previously were taught was rare, and so they are reluctant to even consider the possibility of this dx even when all signs point to it. Even too when the current studies indicate that this is wayyyyyyy more common than ever thought before.

I'm thrilled to see that you are here wanting to learn about this condition, I wish more people were like you!

Rachel--24 Collaborator
I couldn't help noticing, many of the members on this board seem to suffer from more than just Celiac... is it common for other ailments and disorders to join with Celiac, or is it more that Celiac was simply discovered as a result of the increased attention due to the other disease(s)?

<{POST_SNAPBACK}>

In my case I think I probably had the gluten sensitivity before I had thyroid disease. I've learned that Celiac or gluten sensitivity can be active long before symptoms appear. Like Kaiti said undiagnosed gluten sensitivity can lead to other problems. I cant really be certain of which came first but Thyroid and Celiac have a very strong link. I became aware of the thyroid problem 3 years before I really became sick with gluten symptoms. If the gluten sensitivity was there first I definately wasnt feeling it...I felt perfectly healthy.

Good luck with the girl and good job with the cookies! ;)

KaitiUSA Enthusiast
Since you're so helpful, I'll ask you the next big question...

Before you were diagnosed, what were the signs?  Are there any "typical" signs that precede being diagnosed?

Jason

(and thank you.... I baked the cookies and I've been told it's her favorite mix *cheer!*)

<{POST_SNAPBACK}>

There are over 200 symptoms with celiac and everyone differs as to which symptoms they get.

In fact, some people do not get symptoms at all so that makes getting a diagnosis worse.

They really need to do regular screening for celiac because it is very common...as many as 1 in 90 may have it in the US but only about 1 in 4900 I believe are actually diagnosed. So anyone can be walking around with it and not even know it or have been misdiagnosed.

J-Man Newbie
There are over 200 symptoms with celiac and everyone differs as to which symptoms they get.

In fact, some people do not get symptoms at all so that makes getting a diagnosis worse.

They really need to do regular screening for celiac because it is very common...as many as 1 in 90 may have it in the US but only about 1 in 4900 I believe are actually diagnosed. So anyone can be walking around with it and not even know it or have been misdiagnosed.

<{POST_SNAPBACK}>

Wow. Is it something you can just ask for? Is it something you "have" from birth or can it develop?

It seems so mysterious, I wonder if I have it??

Thank you :)

Jason

KaitiUSA Enthusiast

Well here is the full panel that should be run in check for celiac:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG)

Total Serum IgA

You do not have to have it from birth...most people with celiac have a gene that predisposes them to celiac. This gene can activate at any point in life.

Not everyone with the gene develops it but they have that chance to.

Also, there has been debate over this but I believe it to be possible... even if you do not have a gene but have a problem with gluten then it can develop into celiac if you continue to eat gluten

J-Man Newbie

Do you think insurance would cover such tests? I wonder.

It seems like they should, it'd save them a lot of money in the long run.

J

Well here is the full panel that should be run in check for celiac:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG)

Total Serum IgA

You do not have to have it from birth...most people with celiac have a gene that predisposes them to celiac. This gene can activate at any point in life.

Not everyone with the gene develops it but they have that chance to.

Also, there has been debate over this but I believe it to be possible... even if you do not have a gene but have a problem with gluten then it can develop into celiac if you continue to eat gluten

<{POST_SNAPBACK}>

dogear Rookie

J-Man, you sound really head over heels for this girl!!!!!!

The only thing, I've ever seen a man do for a woman at this stage that compares to this, was a guy who took a sign language class because he was really interested in a deaf woman!!!!

It would be sort of sad, if she just goes back to an ex and you never get a chance!!!

But take heart. Many reunifications if not most with an ex, are short lived. While I wouldn't recommend waiting for years and ignoring other women while you wait for her to get rid of the ex entirely, you can just be her friend. Don't denigrate the ex because it won't help your cause. But if you start taking the diet seriously now, she may remember that if and when she goes back to the dating game.

So don't let this possibility rule your life, but you may have a chance yet.

Boy, I feel like an advice columnist.

But if you do get a chance with this girl, remember that people with gluten-free diets have as many different "eating lifestyles" as other people. Some have nothng but meat and potatoes, some are vegetarians who live off fruit, vegetables, peanut butter, and yogurt. Some are conoseuirs of every thing at any corner of the globe that is gluten free. Some depends on the gluten free mixes, while others eschew them.

KaitiUSA Enthusiast
Do you think insurance would cover such tests?  I wonder.

It seems like they should, it'd save them a lot of money in the long run.

J

<{POST_SNAPBACK}>

I think it depends on which tests and which labs do it and also which insurance companies.

I had the celiac gene test as well as the full panel for celiac done by Prometheus Labs(one of the best ,if not the best ,labs for celiac testing) and I also had tests for other things run. We ended up having to pay quite a bit but the insurance company did help some too.

Canadian Karen Community Regular

Hi Jason!

Wow, this girl doesn't know what she's missing!! But from my 42 years of experience, I have learned that trying to "get back together" with an ex, rarely, if ever, works out, so don't take your hat out of the ring yet....... I'll give you a hint, just be there for her, show her the effort you are putting into learning about celiac disease, and be there for support for her. Unless she is blind, she will wake up and realize what is best for her......

In regards to your comment about insurance companies covering the cost of testing since it will save them money in the long run, you just hit the nail on the head. I hope they wake up soon and realize this........

What ethnic heritage do you have? There are certain ethnic groups that are at more risk for celiac than others.......

Karen

J-Man Newbie
Hi Jason!

Wow, this girl doesn't know what she's missing!!  But from my 42 years of experience, I have learned that trying to "get back together" with an ex, rarely, if ever, works out, so don't take your hat out of the ring yet.......  I'll give you a hint, just be there for her, show her the effort you are putting into learning about celiac disease, and be there for support for her.  Unless she is blind, she will wake up and realize what is best for her......

In regards to your comment about insurance companies covering the cost of testing since it will save them money in the long run, you just hit the nail on the head.  I hope they wake up soon and realize this........

What ethnic heritage do you have?  There are certain ethnic groups that are at more risk for celiac than others.......

Karen

<{POST_SNAPBACK}>

Well, I'm mostly Irish/Norwegian, with a few others sprinkled in there for good measure... I will ask my doctor about the tests and see what we can do to start, 'cause it can't hurt. I've seen too many people suffer due to ignorance, so I do try to learn what I can, even if it's bad news.

Thank you all for your words of encouragement. The cookies came out great, and I tried one that broke... and it wasn't half bad!

Our meeting today was disrupted because she got sick, and she thinks it's due to a potential gluten contamination thing from her evening.... but I'm meeting her at a "safe" restaurant tomorrow, cookies in hand ;-)

And yes, I'm being the friend that she needs. She's got the impression of my feelings, but I'm trying to keep them in check, since that's not going to help matters in the short term.

Again, thank you all, it's been most encouraging.

J

Canadian Karen Community Regular

Well, hate to break it to ya, but....., both of your backgrounds are in the high risk group for celiac disease.......

Just thought I would let you know........ :P

Karen

Guest nini

yup, Irish/Norweigan... high risk for Celiac...

I'm Irish/Scottish/English/French/Polynesian mix... tee hee...I'm a mutt! :P

J-Man Newbie
Well, hate to break it to ya, but....., both of your backgrounds are in the high risk group for celiac disease.......

Just thought I would let you know........ :P

Karen

<{POST_SNAPBACK}>

Where would I find this information so I can pass it around to my friends and loved ones?

J

Canadian Karen Community Regular

Well, here is one article, of many:

Open Original Shared Link

Karen

skoki-mom Explorer

Well you better be careful because you will have the single women with Celiac after you, lol!!!

I just wanted to chime in and say it is possible to have celiac disease and have no clinical symptoms. I got tested simply because my sister was diagnosed. I consider myself very lucky actually, because I had the full-on work up and I don't have any of the usual stuff. My blood tests are all normal (no anemia or thyroid issues etc), and my bone density is normal. I also never had any digestive symptoms. So, I'm lucky I can be proactive about it instead of trying to catch up. It's amazing to me really given my biopsy showed complete vilious atrophy, it really doesn't get any worse!!

Seems to me from what I've heard that an antibody test would be in order for most people with sort of "vague" symptoms of not feeling well, much less digestive symptoms!

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