Newbie With Questions

[Chippy28]

Hello all!

 

As the title states I am a newbie here, who received an unofficial celiac diagnosis after my endoscopy last week.  The biopsy results are still pending but my GI is pretty much positive that I have celiac based upon my medical history and told me to start the gluten-free diet.

 

A bit of background info:  I am a 29 year old female who was diagnosed with type 1 diabetes a little over 9 years ago.  I joke that about 4 years ago I became allergic to everything.  That is quite the hyperbole, but I did, all of the sudden, start to experience a lot of sinus issues with headaches and seasonal allergy symptoms, and chronic fatigue.  I developed an allergy to penicillin (despite taking it many times as a child) and also developed an allergic reaction to insulin (ironic, huh?).  About that time my mom was diagnosed with Crohn's and I started to experience mild stomach pain, so I asked my PCP to order a celiac panel.  It came back positive.  My PCP didn't seem concerned (unlike when she diagnosed me with type 1 diabetes), but referred me to a GI for follow up.  I never followed up on that blood test as all of my stomach problems disappeared (I wasn't aware of the non-GI symptoms and how serious celiac is) and I was also having insurance coverage issues.  Fast forward 4 years and I am still dealing with all of these issues...I spoke with multiple doctors only to have my symptoms largely ignored.  About a month ago, I met with my endocrinologist, who has been wonderful in listening to my complaints and trying to figure out what is going on, especially with my insulin allergy.  She seemed to have an "aha! moment" and mentioned that I might be dealing with food intolerances and decided to test me for celiac (she was unaware of my previous positive blood work).  Not surprisingly my TTG IgA came back positive again and I immediately scheduled an appointment with a GI doc.  Since going gluten-free last week, I feel so much better.  Gone are my headaches, brain fog, fatigue, and sinus issues.  In hindsight, I also realize that I had been dealing with some minor stomach pain and bloating, which are also gone now.

 

Things have been going well so far, but I did have a few questions, that I was hoping you, the experts, would be able to answer.

 

1.  When purchasing foods from the interior of the grocery store (i.e., processed or prepared foods), I know that I need to be on the look out for wheat, barley, rye, and oats, but I am concerned about cross-contamination.  I assume this happens often in these types of products, so how do I protect myself?  Will the label state that there is the possibility of cross-contamination or do I need to contact each company about their products?  I have read here that Kraft is an excellent company when it comes to being transparent with their ingredients and any CC issues.  Are there any other companies that I can put on that list?

 

2.  When contacting companies about their ingredients or CC issues, what should I be telling them and asking them?  Anyone have a form letter already typed up that I might be able to look at and adapt?

 

3.  Prior to the celiac dx, eating out was a big part of my life...often occurring 2-3 times per week.  Admittedly I am pretty scared about eating out, but I want to be able to slowly incorporate eating out back into my life.  I am not a confrontational person and tend to go with the flow, so speaking up to restaurant staff is going to be a bit daunting for me at first.  How do you guys handle this?  Do you only dine in restaurants with a gluten-free menu?  Do you immediately ask to speak with a manager to discuss their menu and their preparation methods or will speaking with the waiter suffice?  Do most people understand what celiac disease is or is it easier to say that I have an allergy to wheat/gluten?  What questions should I be asking of the staff?  What accommodations can I realistically expect (and should ask for) when it comes to food preparation?

 

4.  Do most celiacs use gluten-free make-up, lotion, shampoo, etc?  Is there a list of unsafe ingredients that I should be looking for and avoiding in these types of products?

 

5.  Any advice for dealing with communion?  I am Catholic and it is my understanding that the Catholic Church requires their communion host to contain wheat. 

 

6.  One last random question:  Does envelope glue contain gluten?  Should I be avoiding licking envelopes at work?

 

Sorry for my lengthy post and my many, many questions.  I appreciate any advice that you guys can provide.

Thanks!!

[GFinDC]

Welcome to the forum Chippy!

 

You may find answers to some of your questions in these threads.

 

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.
Get your vitamin/mineral levels tested also.
Don't eat in restaurants
Eat only whole foods not processed foods.
Eat only food you cook yourself, think simple foods, not gourmet meals.
Take probiotics.
Take gluten-free vitamins.
Take digestive enzymes.
Avoid dairy.
Avoid sugars and starchy foods.
Avoid alcohol.

Helpful threads:

FAQ Celiac com
https://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

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

What's For Breakfast Today?
https://www.celiac.com/forums/topic/81858-whats-for-breakfast-today/
 

[IrishHeart]

Welcome Chippy!

 

Gee Free in Dee Cee has given you a great start (happy reading!!) and I  will add:

 

(6) No worries on the envelopes. That's an old myth.  The adhesives in glue do not contain gluten.

 

Open Original Shared Link

 

(5) For communion wafers, the RCC allows a special" low gluten" wafer designed by the Benedictine nuns. It contains <20ppm, and is in accordance with Church doctrine (which insists on a certain amount of wheat to make it okay, but I won't get into that  ) and I ordered them for my Mom. I called them, but you can order online as well. Their address, number, etc is in this article. Read here:

 

Open Original Shared Link

 

(3) I use the app Find Me Gluten Free, but as time goes on, chefs, managers and restaurant servers are becoming adept at providing a gluten-free meal. Eating out is always a potential crap-shoot for us, IMHO, and you may wish to wait a bit to get your gut straightened out before trying too many things at once.

But many of us do eat out at places that take the time to learn about cc (cross contamination issues and how to avoid them ) and we suffer no ill effects. 

Here is another:

 

Open Original Shared Link

Best wishes!

[shadowicewolf]

Are you planning on having further testing for celiac (such as the endoscopy)? Because if that's the case, you need to be on gluten for it to be accurate.

 

1. Ah, unilever is another one i believe.

 

3. I pretty much don't eat out. The only times i have is when i've gone to a steak house.

 

4. Yes, I do. If it has a chance to get into your mouth, then its best just to be cautious.

[IrishHeart]

I had another thought while walking the treadmill this morning.

Get the book Real Life with Celiac Disease by Melinda Dennis and Daniel Leffler

because it answers EVERY question you have posted.

Great source and I wish I had known about it

when I was Dxed, as it would have saved me tons of time researching and stumbling about in the dark.

 

RE: the makeup, etc.

Definitely be careful of lipstick, lotions on your face or shampoo. Anything that may get into your mouth

is a concern, obviously.

Some people seem to have a problem with  topicals, but many of us do not.

There are many threads about this topic on here (and many differences of opinion about it)

And I never worry about mascara, as I do not chew my eyelashes.  

 

 

Are you planning on having further testing for celiac (such as the endoscopy)? Because if that's the case, you need to be on gluten for it to be accurate.

 

SIW, Chippy says she just had the endo/biopsy done and is waiting on the results and the doc said "Go gluten-free".  .

[psawyer]

To question number one, there are quite a few companies whose policy is to clearly disclose any gluten source. There is a good list Open Original Shared Link.

Among others it lists Con Agra, General Mills, Kraft, Nestle and Unilever. Those five companies encompass many familiar brands whom you may not immediately associate with the parent.

[Adalaide]

I'm really careful with all of my personal care products that I use from the neck up, my lotion since it goes on my hands and everything I use in the shower. (I have a terrible habit of doing moronic things like putting my razor handle in my mouth while applying shaving lotion.) I figure with makeup, which I wear pretty rarely, if I am getting my face cleaner in my mouth on occasion, and I do, then everything I am washing of my face is also ending up in my mouth. Lotion, makeup, everything. So I'm just careful. Plus if I'm getting shampoo in my eyes, and who doesn't? (Plus who isn't super careful not to?) Why wouldn't that shampoo end up in my mouth on occasion also?

 

Whenever I contact a company I always go with what feels right for that company. What feels right to say to one company, for instance one of the huge international corporations, may not feel right when contacting a more local business. When asking about personal products, I wouldn't say the same things I do when I ask about food products. I just kinda go with my heart on that one, or if I'm having a bad day, my temper.

 

If the envelopes taste bad, make someone else lick them! You've never had a better excuse and no one will know any better. They're safe though.

 

I also think that as a disclaimer I am probably required to point out that I am in fact the most paranoid person I know. Few people are as convinced as me that they'll actually get everything in their mouths.

[shadowicewolf]

How did i miss that?

 

Sorry about that

 

I used to eat out a lot as well. I no longer do so (outside of steak houses) because i do not trust them. You can always eat before you go and have a nice drink while others are eating.

[IrishHeart]

How did i miss that?

maybe your eyeballs are tired from all that studying. you work hard!

[gfreemarketingguru]

Great questions.

When grocery shopping...a lot of manufacturers are starting to label gluten-free. I alsood google products as I shop, many of their websites provide gluten info im faq or allergy section, if u cant find it, dont buy it!

Someone else mentioned FIND ME GLUTEN FREE. its a must have app to learn what restaurants offer gluten-free menus & even more useful are the consumer reviews of their gluten-free experience. In a restaurant, I say I have an allergy to gluten (celiac or autoimmune disease is confusing to food servers but allergy gets u attention).

My church offers a low-gluten communion wafer, its better than nothing. You can ask, or just go for the wine, I doubt Christ would mind!

Its debatable about cosmetics/soaps/lotions...best bet is to do your best to find gluten-free options, especially for anything on your lips.

Good Luck.

[Chippy28]

Thank you for all the advice and answers!  My doctor called today and let me know that my biopsy did in fact come back positive, so I officially joined the club today.  Please feel free to keep passing along advice.  Any information at this point is extremely welcome!

 

 

I had another thought while walking the treadmill this morning.

Get the book Real Life with Celiac Disease by Melinda Dennis and Daniel Leffler

because it answers EVERY question you have posted.

Great source and I wish I had known about it

when I was Dxed, as it would have saved me tons of time researching and stumbling about in the dark.

 

I actually just picked up this book from my library this afternoon!  Glad to hear it is helpful!

[mushroom]

Welcome to the club you hadn't planned on joining    Any questions you have just fire away, but there is a lot of useful information on this site for reading, as well. 

[IrishHeart]

My church offers a low-gluten communion wafer, its better than nothing. You can ask, or just go for the wine, I doubt Christ would mind!

 

 

Yes, but just be sure to take the wine FIRST, before anyone dips a wafer in there. If you tell your priest or minister you have celiac, he or she can have you come up front first.

 

I also got my Mom a pyx. She keeps the unconsecrated wafers in her freezer, puts one in the pyx on Sunday morning, brings it to the church, hands it to the priest before Mass and he places it on the altar, away from the wheat hosts.  She goes up first, takes the pyx and takes the wafer herself.

No cross contamination. 

 

The RCC does not provide gluten-free wafers, she was told rather firmly. You have to buy them yourself from the nuns I mentioned. 

 

Individual Pyxes are for sale online from religious stores. Google PYX. I got her one for about $15.

[alliesees]

Hello all!

 

As the title states I am a newbie here, who received an unofficial celiac diagnosis after my endoscopy last week.  The biopsy results are still pending but my GI is pretty much positive that I have celiac based upon my medical history and told me to start the gluten-free diet.

 

A bit of background info:  I am a 29 year old female who was diagnosed with type 1 diabetes a little over 9 years ago.  I joke that about 4 years ago I became allergic to everything.  That is quite the hyperbole, but I did, all of the sudden, start to experience a lot of sinus issues with headaches and seasonal allergy symptoms, and chronic fatigue.  I developed an allergy to penicillin (despite taking it many times as a child) and also developed an allergic reaction to insulin (ironic, huh?).  About that time my mom was diagnosed with Crohn's and I started to experience mild stomach pain, so I asked my PCP to order a celiac panel.  It came back positive.  My PCP didn't seem concerned (unlike when she diagnosed me with type 1 diabetes), but referred me to a GI for follow up.  I never followed up on that blood test as all of my stomach problems disappeared (I wasn't aware of the non-GI symptoms and how serious celiac is) and I was also having insurance coverage issues.  Fast forward 4 years and I am still dealing with all of these issues...I spoke with multiple doctors only to have my symptoms largely ignored.  About a month ago, I met with my endocrinologist, who has been wonderful in listening to my complaints and trying to figure out what is going on, especially with my insulin allergy.  She seemed to have an "aha! moment" and mentioned that I might be dealing with food intolerances and decided to test me for celiac (she was unaware of my previous positive blood work).  Not surprisingly my TTG IgA came back positive again and I immediately scheduled an appointment with a GI doc.  Since going gluten-free last week, I feel so much better.  Gone are my headaches, brain fog, fatigue, and sinus issues.  In hindsight, I also realize that I had been dealing with some minor stomach pain and bloating, which are also gone now.

 

Things have been going well so far, but I did have a few questions, that I was hoping you, the experts, would be able to answer.

 

1.  When purchasing foods from the interior of the grocery store (i.e., processed or prepared foods), I know that I need to be on the look out for wheat, barley, rye, and oats, but I am concerned about cross-contamination.  I assume this happens often in these types of products, so how do I protect myself?  Will the label state that there is the possibility of cross-contamination or do I need to contact each company about their products?  I have read here that Kraft is an excellent company when it comes to being transparent with their ingredients and any CC issues.  Are there any other companies that I can put on that list?

 

2.  When contacting companies about their ingredients or CC issues, what should I be telling them and asking them?  Anyone have a form letter already typed up that I might be able to look at and adapt?

 

3.  Prior to the celiac dx, eating out was a big part of my life...often occurring 2-3 times per week.  Admittedly I am pretty scared about eating out, but I want to be able to slowly incorporate eating out back into my life.  I am not a confrontational person and tend to go with the flow, so speaking up to restaurant staff is going to be a bit daunting for me at first.  How do you guys handle this?  Do you only dine in restaurants with a gluten-free menu?  Do you immediately ask to speak with a manager to discuss their menu and their preparation methods or will speaking with the waiter suffice?  Do most people understand what celiac disease is or is it easier to say that I have an allergy to wheat/gluten?  What questions should I be asking of the staff?  What accommodations can I realistically expect (and should ask for) when it comes to food preparation?

 

4.  Do most celiacs use gluten-free make-up, lotion, shampoo, etc?  Is there a list of unsafe ingredients that I should be looking for and avoiding in these types of products?

 

5.  Any advice for dealing with communion?  I am Catholic and it is my understanding that the Catholic Church requires their communion host to contain wheat. 

 

6.  One last random question:  Does envelope glue contain gluten?  Should I be avoiding licking envelopes at work?

 

Sorry for my lengthy post and my many, many questions.  I appreciate any advice that you guys can provide.

Thanks!!

I hope some of these suggestions help!

 

#1.  When you are new, I suggest you try as much as possible to stick with what is identified as gluten-free when shopping.  Most cheeses, meats, veges, fruit, nuts (with no coating) are good to go, but in terms of processed food...start safe and look for the gluten-free guarantee.  You do not have to worry about cross contamination once that label has been placed on the packaging (in most cases!!)  Many grocery stores also have gluten-free lists if you look on line or call their headquarters.  You will get used to spending time calling for confirmation.

#2.  As for confirming gluten free...I use a lot of customer service lines.  You can usually tell right off the bat if the person is totally clueless or not.  I always start off by explaining my gluten intolerance and celiac diagnosis, and then I go from there.  Sometimes when I sense cluelessness I quiz them, like...ummm, so can you tell me what gluten is?  (who cares, right?).  In terms of restaurants, re-watch "When Harry Met Sally" if you haven't seen it before. There's this one scene where Sally orders her food in a restaurant.  Yup....that's what you'll do.  Micro manage every inch of that order, down to wiping the grill before the corn tortilla is placed on it and using a time foil liner on the prep counter and grill.  My kids, family and best friends even know how to order for me when I am running late.  Honey....I wear this one as a badge of honor.  Own it.

#4.  Ahhhh, toiletries and make-up.  Never, never purchase anything that may have gluten in it.  From every item you place on your face to the very lotion you rub on your toes.  Cetaphil, Lubriderm, Dove, most Neutrogena.  I call before I put any item on my body.  They will always be able to confirm.  As for make-up....same goes. I use a lot of Clinique products but trust me...all Clinique is not gluten-free.  Call before you purchase anything.  Call with three or four versions of Foundation, lipstick, etc.  Once the company has confirmed, then purchase it.  It is the only safe bet.  You get that stuff under your nails and then you eat a handful of something and guess what?  

 

**My advice to you is to start a favorites page on your computer or phone where you save gluten-free lists, menus and customer service numbers.  This is how we live.  At first it is such a pain in the butt and slows you down, but if you do it right, and wear it well, it can be a skill that others just marvel at and now since you're not eating gluten you're feeling good physically (not to mentions many of the other "allergy like" symptoms will go away once you begin to abstain from gluten, you're also feeling good emotionally because you are in control of this pesky thing we call gluten-free livin'.  

[daisy buchanan]

These are all really helpful for me too. Thank you very much. I have so many questions but I will read the all those links. 

[Chippy28]

Thanks again for all of the information! 

 

Are the low-gluten communion hosts okay for Celiacs?  I didn't have many obvious symptoms prior to dx, so I am worried that if I get glutened that I won't actually know it.

 

I have been gluten-free for 2.5 weeks and so far so good.  I don't seem to be dealing with gluten withdrawal, but I am missing eating out desperately.  I actually broke down for the first time since dx this weekend when I turned down a dinner invitation.  Hopefully that will be the next skill I master!

[IrishHeart]

My Mom takes the low gluten hosts. She does not have any problem with them.

They are the same "safe level" as any other certified gluten-free product.

 

I ordered them for her from here:

 

Open Original Shared Link

[bololgreen]

I, too, was recenty diagnosed with celiac (as was my son) and am still having a hard time adjusting.  It is definitely better now than four weeks ago.  .  I appreciate all the great information from others who know (we don't have a support group in the area).  Thank you!

[Chippy28]

My Mom takes the low gluten hosts. She does not have any problem with them.

They are the same "safe level" as any other certified gluten-free product.

 

I ordered them for her from here:

 

Open Original Shared Link

 

Thank you!!  It is good to know that they are "safe" for celiacs.

[IrishHeart]

Thank you!!  It is good to know that they are "safe" for celiacs.

 

so "they" say.  all I can tell you is she does not have an overt reaction, if that is helpful to you.

[Chippy28]

so "they" say.  all I can tell you is she does not have an overt reaction, if that is helpful to you.

 

Yeah definitely helpful!  Thanks again!