LauraTX

Just a note on the insurance thing... sometimes doctors will only take and process certain insurances, but someone with another insurance may be able to use them out of network and submit the claims themselves.  Info on this can be found out through your insurance company.  You can also just self-pay, sometimes doctors will cut you a deal and it is worth it for a good doc.

....I hear there are people who actually eat Ener-G bread. 

Peter has a good point.  They are out there, wherever they are....

I like Rudi's Multigrain bread.  Definitely has to be toasted, though.  Makes great sandwiches and toast.  Haven't tried any other multigrain kind, I eat very little bread.  I would pick up the canyon bakehouse if I saw it based on the number of people that have recommended it, though.

Haha, I love the doctor's note idea, but some of us can't get that. :-/

If you can't get a doctors note easily, get some of those dining cards.  With the giant red writing of what you can't have, they should be able to figure out what is going on is legitimate.  I have never had to show my doctors note yet, in a year and a half.

Welcome to the forum!

In general, beer is going to contain gluten unless it is specifically formulated without the gluten containing grains that most beers are made of.  I looked up that brand of beer and saw a mention of hops, and no mention to the absence of gluten, so that is not going to be a gluten-free lager.  Purity with beer is something totally different than the potential absence of gluten/allergens.  When looking for a gluten-free beer, look for a brand that states it is naturally gluten free.  Some brands use gluten in production and then claim to remove it, but I would still stay away from those and go with something that was never made with it in the first place.  

I would make double sure they are doing every single test including total serum IgA/IgG levels so you can make sure you are covered before you go gluten-free.  Also make sure they are taking plentiful biopsies so there is no dilly dallying with the readout.  You can make it through!

....Maybe I just ask for forgiveness over permission...??.....

Yep.  Especially if there is other food around, I just take it in with me.  I have a doctors note as well, I get her to re write it at every annual exam so it has a current date.  If it is a really strict place where bags are checked and such, I just make sure I have my note on me, I don't call ahead.  Especially with kids and food allergies, I would think staff would be less intrusive than with an adult.  I always carry food in discreetly, be respectful, etc.  I have brought my own burger bun into restaurants and I never say anything, just pull it out of my purse once the waitperson walks off  

I would drive an hour, or stop by when I was in that area.  For just dinner nothing else, I have driven 45 minutes, it is worth it if it is that good.  

Oooh, looks like a good recipe.  If I want to eat them in like, the car, and not be messy, should I up the sugar a little bit?  Definitely going into my to try folder!

I figure the cleaning people might see it though .

Stuff it back inside a bag of suitcase.  They aren't -supposed- to dig in your stuff.  But yeah if you leave it out they may say something, hehe.

Thank you   I'm glad too.  This forum is going to help out a lot.  To keep the thread on topic I just got home from nutrishop and picked up some gluten-free protein. The guy said virtually all of their supplements are gluten-free.

Did the gentleman tell you which ones were not? Make sure to take note

My stomach has always had a hard time with coffee.  I basically no longer drink coffee... I used to have a latte or something when I was needing the caffeine, but I now (rarely) will drink 5 hour energy if caffeine is what I desperately need.  I know some coffees can have less acid and stuff than others, but since I am not a coffee connoisseur, I can't really guide ya.  But if you go to one of those nice gourmet places that have a ton of selection you may be able to talk to someone and buy enough to sample of a few kinds.

Depending on what it is, sometimes I will just bring my own thing, whatever, or bring something myself in a crock pot and make sure I get the first serving before people get their grubby CC hands all over it.  I like to bring dessert, like brownies or cookies, and then go around asking people how they liked the cookies, and then ask if they can tell it was gluten-free.  Then I like to bask in the glory of knowing they couldn't tell!!!

I'm hoping that the hotel I need to go to will allow my toaster oven due to medical necessity

Just don't tell them.  No one has to know...  Muahahahahahahahh!

We went to a con last year and I brought in my own lunch food, once all our friends found out I could smuggle in granola bars they had me take some in for them too, so they wouldn't have to buy expensive crap to hold them over until dinner.  On trips, I have usually been eating something I brought for lunch, and that has saved me a bunch of money.  Only have to worry about dinner.

I like to use sea salt. 

King Arthurs flour has a popover ecipe on the package.  I have tried it and it is really good.

Here is the recipe they have on the package:  Open Original Shared Link

If you can't get their flour blend, they give an alternate recipe for it.

Intermittent leave with FMLA is the way to go.  Contact your HR dept ASAP and ask them for the forms you need and if you are FMLA eligible.  They won't pay you for the days off, but it will protect your job so when you get better it is still there. 

In our bed.  Hubs not allowed to eat late night snacks in the bed anymore 

 

Colleen

That has me cracking up!!!!!!! 

Well, not that it matters but I usually do but I was at Sam's getting other things and was going to pick up some frozen veges since I was out and they have a good price on them...and low and behold, I couldn't....

 I used to pick up frozen veggies at sams club but over the last year or so, I think all of them now are no bueno.  I always go read the back and then loudly scoff and throw it back on the shelf, LOL.  

My weirdest place I have seen gluten is in the chocolate ice cream at a place called Bahama Bucks.  They are opening one near me and I looked it up online... Allergen menu has nothing checkmarked under the gluten column, but I read the whole ingredients list (full of artificial crap and not worth my money btw) and the last thing there was chocolate ice cream with WHEAT FLOUR listed... I was like.... what the heck???!!!!

Unfortunately Celiac damage needs a microscope to be seen in most cases, so time to hurry up and wait!  

Bobs red mill has gluten-free corn meal and gluten-free corn flour (fine ground).  I use those.  I know there are others out there, but due to possible CC, I would definitely pick one up that is labeled gluten-free and tested by the company.

My diagnosis was pretty much by accident.  They thought I had ulcers and did an endoscopy.  Once they got everything figured out and I went on a gluten-free diet, many other things went away that I didn't realize were from the Celiac, including anemia and peripheral neruopathy.  There actually are a lot of people like me who do not have the "classic" diarrhea and GI symptoms that are associated with Celiac disease.  Given how severe your deficiencies are, I do hope that there is a solid answer, and Celiac would probably be the least bad and the most simple to treat.  Let us know when you find out results!  

It sucks that the ones who need the most help get bungled the most.  Just a useful FYI, if you can deal with doing it, I am also in between synthroid dose ranges.  Too low with 88 mcg and too high with 100 mcg.  So my doctor has me taking them both, alternating days.  I use a 7 day pillbox and I have one cap with "first" written on it, so I know which to use first on the next week.  works well since I am right in the middle!

There is no federal regulation in place that requires pharmaceutical companies to disclose whether or not a medication contains gluten. Thus you can't really expect pharmacist's to know this information. Because they don't have to. I work as a pharmacy technician at Walmart and none of my pharmacist's know very much, but they told me the next time I get any medicine they'll do their best for me. But honestly, if you are going to take a one time dose of a medication, you probably will be okay if it has gluten in it. Now if you're on synthroid, birth control, lisinopril, or any other long-term health maintenance medication, you might want to seek out this information. But if you're taking a Z-Pack, you'll be fine. 

Welcome to the forum, Amich.  I appreciate your input as a pharmacy tech, but unfortunately this:  "But honestly, if you are going to take a one time dose of a medication, you probably will be okay if it has gluten in it" is not totally correct.  For someone with Celiac disease taking a medication that is absorbed in the GI tract (a pill), if that medication has gluten and gives them a reaction it will make them more ill, and if they have diarrhea, it can also interfere with the absorption of the medication.  Therefore, it is important to check every single thing that goes in your mouth.

I completely agree with you that pharmacists do not know because that is not something they are trained to do or have to do.  Some go above and beyond once they know what the issue is, others in busy stores don't have time, but in general they have the same resources the patient does.  So the bottom line is that if your pharmacist is able to help, that is great, and you can educate them a little on Celiac if time allows, but in the end it is the Celiac patient's responsibility to police what goes in their mouth.  

Some day we will have a medication labeling change.... I have a silly yak dream..... 

Welcome to the forum, mitchgam!  

----I first feel the need to point out to any future readers that this is pertaining to a wheat allergy, not celiac disease.---

With celiac disease, you cannot eat any kind of wheat, no matter what type.

I moved your post from the dermatitis herpiteformis section since this is not DH and I don't want people giving you inaccurate answers.  Eyes and throat swelling on top of a skin rash is a whole different ballgame. Now, that doesn't mean that by chance you didn't also have Celiac, and as you said you will not be able to find out in the current time period's diagnostic methods.  When it comes to a wheat allergy, did you get allergy testing, or was it figured out through process of elimination?  Allergies can be to anything, sometimes very specific, sometimes broad, so it wouldn't be a surprise to me if there were strains that gave a worse reaction, and some that gave no reaction at all.  I am not well versed in the wheat allergy, but there are a few people on the forum here that deal with that issue as well, so hopefully they have something to add.  Out of precaution, unless you figure out with more specifics on what you do and do not react to, I would not assume any kind of wheat is safe.

This page has a list of the different proteins in wheat that cause the IgE allergic reactions.  Open Original Shared Link  

The different strains of wheat are going to each have their own unique makeup, but it may be a hard thing to solidly figure out which one(s) you have a problem with.

Karen and SMRI said it before I could!  If you have a ton of trouble, broth is very easy to make, and you can freeze it in ice cube trays and pop  out just what you need.  Broth is technically just chicken + water.  Add veggies and such and it becomes a stock.  The lines are blurred sometimes, though, but with a quick google search you can easily find one that suits your needs.

I would definitely check with the doctor if you suspect pancreatitis, that can get pretty serious.  After I had my gallbladder out this spring, it took me weeks to be able to move around well, and about two months to feel near normal.  My gallbladder was very sickly and the surgeon told me he had to basically scrape it off my liver because it wouldn't come out, and I still have random pains come from that area, although they are lessening as time goes on.  It really was a horrible terrible experience for me and I was not mentally prepared to feel that bad.

For the low fat diet, they told me to stay on it until I really feel better, and then start slowly reintroducing foods.  I found that if I ate a high fat meal with nothing else  (like pizza), it would cause me to have "D".  Someone told me that if I want to eat something like that, eat some roughage or something with no fat first to trick my body if it were.  And doing that works.  So always salad before my pizza, etc.  but overall I don't eat many very fatty meals.  I also take digestive enzymes with my main meal of the day, and anything fatty/rich, and that seems to help with the discomfort and stuff going right through.  It has been 5 months since my surgery, so I haven't tried going off that routine yet, but I was also told by the doctor that many of those symptoms can take a year to go away.