LauraTX

For me, the most annoying thing ever is the people who think reading a few articles on the internet gives them a medical degree and makes them an expert at your problems.  I have lupus, celiac, and I also lack part of my natural immune system, and I always tell people the minimum amount necessary because I have heard the most ridiculous crap from people who barely know me and my health history.  Some times I am not nice about it, if they are strangers and are very intrusive.  Also the whole saying it is a fad, etc. will get you a scientific lecture.  I tutored science to eat my way through college, so I WILL make sure you understand by the time I am done with you!

Also I am surprised no one has put, on the list of silly things said to celiacs:

Me: "I can't have gluten."

From an RN:  "Oh, so glucose? So you are a diabetic?"

After ordering a milkshake from sonic and asking them to clean the stirry stick since I cant have gluten which is in the oreos and pie pieces, the employee came out after a long time without the item and said sweetly,

"You can't have gluten?  Well there is a lot of sugar in this, we just want to make sure that is okay."

Luckily that was an opportunity to educate and when I see her there I will make a U-turn when driving past and go get a milkshake in confidence

"What DO you eat?"- I will list off all the delicious food I made myself in the last few weeks.

And on a more humorous note, things my husband has lovingly said to me:

"-redacted dirty thing- is gluten free!"   (if you are a married woman, use your imagination here, haha) 

He got slapped over that!

"You are my silly yak girl"

At petsmart: "I wonder if they have any silly yak food for you here?"  

That got a dirty look from me, but I was cracking up!

I can understand, after struggling for so long, being able to finally let your guard down, but then doing it too much.  It is hard to find a balance between oops that had gluten and total gluten nazi.  The one time I almost messed up, I was at a dinner at a place that I could eat gluten-free, with my crazy old aunt.  She was insisting I put the leftover rolls in my doggy bag so they wouldn't go to waste, so I habitually did what she said and then I was like, "Oh crap I can't eat that now," so I gave the leftovers to my husband.  I have also gone somewhere that I could eat gluten-free and my husband was not, and reached over to sneak a taste of something on his plate when he was like "Uhhhhhhh" and stopped me.  I am very glad he has my back. So I would say training your family and friends to look out for you as well, is a really good idea.  Definitely reward your son for having your back!

I do not serve gluten to guests at my house, because they don't know how to not contaminate everything in their path.  Only a few select people who understand me are allowed to consume gluten around me, haha.  I always put it like this if I am given trouble with it by someone.  

"If you were allergic to peanuts and had a peanut-free kitchen, would you still serve peanuts to your guests?"  And when they respond "No, that would be ridiculous!"  I say, "Exactly!!!!"  and it drives the point across well.

I think the idea of a taco bar is a good idea.  Then you can only put out gluten-free taco shells/nacho chips (if anyone asks if you have tortillas just say "oops only bought hard shells!"), plus all the toppings that are naturally gluten-free.  Also, meatballs are really easy to make ahead of time if you cannot find them pre-made, and heat them up the day of.  A crock pot is great for that.  You can make baked pasta and people can never tell the pasta is gluten free.  Buy some big foil pans, throw in cooked pasta/sauce and some cheese on top, hands-off preparation just pop them in and out of the oven.   For grilled items, you could do meat and veggie skewers, those you can put together ahead of time and they cook up quickly.

If you do a cheese/fruit platter, you can probably get away with serving gluten-free crackers as well, people will just think they are some fancy brand.  But for me, I try to not waste so much money on food people will possible turn their nose up at, so I usually will not buy a gluten-free substitute item to serve to guests except for pasta, I stick to things that are naturally gluten free.

If you do a taco bar, here is a recipe for mexican rice, you can multiply the recipe very easily, it is mild but tasty.  Was given to me by a mexican friend

Mexican Rice

1 Tbsp. vegetable oil

1 C long grain white rice

2 C chicken broth

1/2 onion or 1 shallot

1 whole tomato,seeded

1 tsp. garlic powder

Salt & pepper to taste

Heat oil in saucepan over medium-low heat.   Add rice and brown until golden brown.  Carefully add chicken broth and grate in onion and tomato. Add garlic powder, salt, and pepper.  Bring to a boil and then simmer 25 minutes, covered, until rice is done.

To prevent the rice from being soggy, use grated tomato towards total liquid volume measurement if the tomato is really juicy.

I love rudis multigrain, I have always loved turkey sandwiches on whole wheat and that made a great replacement.  Also the Schar stuff that I have tried I really like.

Tonalyn, I know it sounds cliche but it does get better!  I was so freaking depressed when I had to go gluten free.  I donated my pantry items to the food bank and gave my frozen items to a neighbor with a bunch of kids to feed.  

A few weeks after my diagnosis, I had long-before promised to go pick up and deliver delicious barbecue to my spouses workplace for a party they were having.  I was running late that day and had yet to eat, and I had to sit hungrily waiting in the restaurant for 20 minutes smelling the aroma of food I could not eat.  They didn't have any safe food for me, the lady at the counter felt bad and gave me a free soda though.  I made it through that 20 minutes, but as soon as I got out the door I started bawling.  I called my husband and told him to meet me in the back corner of their parking lot by himself and when I got there I was like take the food, yes I know I am crying, I just want to leave before someone sees me, bye.  Later my husband said he felt so bad for me he shed a tear, too, and he is not an emotional guy, haha.

I am also a "silent celiac," I don't get the breakthrough symptoms upon accidental gluten exposure, but I have immune and autoimmune problems and they are all intertwined so I stay gluten free, knowing it will help me not feel like crap.  This forum was a godsend to me, and just like any new role you have to play, "gluten police" gets a little easier as time goes on, and you get to know your way around things and gain confidence.

Hi Hapy,

I just posted a new topic in this area, check it out and I hope it helps you  I started it as a reply to this but I thought it would be better off as its own thing.

The following was written for you by a pharmacy technician who recently escaped from their retail chain job but remembers it all too well:

I would like to help you out with a best-practices guide on getting what you need from an understaffed, busy pharmacy.  I am also on a ton of medications and have a lot of experience doing all of this for myself, but you guys don't have friends behind the counter that will drop what they are doing to help you. See the last section if you want that.  

So, you take a prescription to the pharmacy for a medication that is available in generic form.  If it is brand name only, hopefully you asked your doctor if there is a generic alternative before you left with a script, but sometimes the name brand is the best for you or only thing available, and you have less options if it is not free of your allergen.

Your pharmacy will fill it with whatever manufacturer they keep on hand, which sometimes changes because they are always looking at prices, supply/demand, and other complicated things.  If your research/experience deems this brand to be not-okay, there are usually a lot of different generic brands for each med.  Some things will affect the availability of a drug and there may only be 1 or 2 companies who make it, but 2 options are better than one when one is no good

The easiest way for you to get results are:

1. Call the pharmacy at a less-busy time like mid afternoon, or go in in person and talk to them (Not in the drive through) when they aren't busy.  If your medicine is a controlled substance you may want to bring something saying you have an allergy, they may not be keen on talking to you about what brands of hydrocodone they carry for safety reasons.

2. Talk to the pharmacist, let them know you found out about an allergen in this generic brand, and ask for them to get the person who does the ordering to get you a list of equivalent medication that they can order from their supplier.  They may need to call you back but this should be very easily accessible for them as electronic ordering is all there is nowadays. (that way you don't bother with something not available in your area, etc.)

3. Get that list and look the meds up, hopefully one is allergen free verifiable

4. Ask the pharmacy to fill the RX with that "NDC" only.  An NDC is a unique number for that manufacturer-made drug. Tell them to put a note in your electronic profile and a note on the shelf where they keep the product to prevent this from being overlooked.

5. The pharmacy may screw up and fill with their preferred brand sometimes on refills and such still, because the computers like to auto-substitute with their preferred brand, so physically check the med before you leave and have them fix it if needed.

6. I just have to add... Always be nice to your pharmacy staff, and don't treat the pharmacy and its drive-thru like a fast food place.  These people do more than just count pills, they have a legal responsibility to not kill you.  If you have special needs, you are more likely to get good service at an independent pharmacy, but sometimes you are like me and your insurance makes you go to a specific chain.  *grumpyface*  Also, if you are at your pharmacy a lot, bringing the staff treats and being super nice to them will probably get you preferential treatment when you walk up to the counter.  Okay, I will admit my friends at -retail chain- told me to add that part.  But it is all true!

I love the old school picture!  And everyone has such cute pets.  

In Fort Worth, TX, a family was on the news recently because they were throwing a rowdy house party and were rude to the police, so they went out and ticketed every vehicle that was parked and did not have the parking brake engaged.  Technically it is state law you have to put your parking brake on, along with removing the keys etc.  Also in Texas, if you leave the keys in your vehicle/leave it running and it gets stolen, it is considered owner-involved theft and they will not investigate it the same, and some insurances will not pay your claim.  But that makes sense to me  

Also in certain cities and areas, they are considered "dry".  To order alcohol in a restaurant you have to join a free "club" first.  So you just fill out a little card with your name, they let you keep half and you show it when you go to any restaurant in that area because all the restaurants are branches of the same club.

Some cities also have antiquated profanity laws, that they basically only use if you are being an a--hole at city council meetings or they have nothing else to charge you with.  

I always loved the texture of couscous and quinoa fills that gap for me.  Cooks about the same, too.

I have also seen veggie burger patty recipes using chick peas and lentils, I am sure any of those you can switch up for as well. It is really economical, too, unlike gluten-free baking, haha, so no stress experimenting.

Connie, sounds like I need to come hang out at your house!

/rant

The one thing I cannot satisfy while gluten-free is my craving for a YEAST doughnut.  Not a cruddy cake doughnut.  I would pay anything for a gluten-free yeast doughnut that tasted like the non gluten-free version.     I have a dream that some day, I will get this.  

/end rant

But I do like King Arthur gluten-free mixes and flour the best, so I would definitely try one of their recipes out first if I were going to start.  

Thanks for sharing with us.  Like cyclinglady said, no cheating if you are actually a celiac  If I were you, I would try to hunt down another GI doctor and get in to see them.  They can do the genetic testing and depending on those results you can personally weigh the benefit of eating gluten temporarily to be tested for celiac.  It will really come down to how important having the answer is to you. For me, especially if I were wanting to have children, knowing my full medical state and any possible risk that my offspring could have it so it can be identified early, would be important.  

I have common variable immunodeficiency with a very low IgA and IgG, I am on IVIG for it, will be forever.  If you still feel that everything is inconclusive, you maybe could go talk to an immunologist since you had the slightly low IgA.  The guy I go to does allergy,asthma, and immunology, but he also treats and diagnoses celiac disease sometimes, partners with a GI clinic, and he has a lot of patients in a celiac study.  His specialization seems to cross many lines, so maybe if you get a doctor like that, they can at least get you steered in the right direction.  

Your symptoms sound a lot like what I have gone through, if you have a good relationship with your PCP, going to them and saying "test me for everything" and having them run a lot of blood tests like ANA, uric acid, CRP, etc may also be a good step to help rule some things out, like autoimmune conditions.  I wish you the best of luck!

By the way I love your lovely bird hat

I have gallbladder polyps and I haven't had a HIDA scan, I can tell this thing hates me with a vengeance and doesn't work right.  It used to respond to bad foods, now it just hurts whenever it wants.  About once a month I am up all night screaming.  I need to get it taken out, but I am putting it off as long as I can because I have a lot of other health things going on.  According to my GI, my severe GERD is at least partially because of my gallbladder.  Of course there is a lot of overlapping there, but I do hope for you that maybe they are able to find fault with your gallbladder and yank that sucker out, and hopefully it will help.  

But overall, if you feel better on a gluten-free diet, by all means do it.  No one knows your body as well as you do because you can feel things they cannot.   A lot of what ails us has blurred boundaries with what causes what.  If you go gluten-free on your own accord, maybe go see a different GI doctor who knows about gluten intolerance, once all your other health problems get under control a little more and you have time to mess with the gluten issue again.  But I know a girl who I am pretty sure has celiac and DH, but she went gluten-free on her own years ago, it fixed her rashes, and she has no intention of going back on gluten just so they can test and get an official medical answer.  

It is always nice to have a place on the safe list for when you are out of the house.  Thanks for the reviews, everyone.

I have seen some frozen vegetarian burger patties that are also gluten free.  There was one you put in the toaster, I got an advertisement for it in a gluten-free subscription box.  I don't buy those kinds of things so I can't recall any brands.  I would go check out Whole Foods or a similar store you can get to, and just do some label reading and see what you find.  A lot of times some things are so complex to make it is worth buying it, especially if it is a rare treat.  Before I went gluten-free I really liked the chilis black bean burger patty, so maybe you can use a copycat recipe online, and convert it to gluten-free.  Like this one:

Open Original Shared Link

It uses eggs and breadcrumbs as the glue to hold it together.  To make gluten-free breadcrumbs just leave a few slices of bread out on the counter to dry out a little, break them up and pulse in a food processor.  If you don't eat eggs, I am not sure what to use.  But your substitute would need to be able to bind everything together.

I agree with you that it certainly points to the construction work.  Especially with it being an older building, they can be kicking up all kinds of particulates that irritate the skin and respiratory tract, and things like insulation and such can create little stabby fibers which can be especially bad for the skin.  

I feel for you because I, too, am super itchy all the time.  I seem to react with a rash to a lot of things in body care products so I have to really pay attention to what I put on my skin, or I will have a bad day.  You seem to have used your brain pretty well as far as eliminating other causes, so I won't lecture you on that.  

What I would do are two things.  First, go ahead and get tested for gluten issues.  You would kick yourself if you cut the investigation short now and found out much later that it was the problem.  I saw your thread about the skin test, but you need a blood test and possibly an upper GI endoscopy(a breeze compared to a colonoscopy-they just go down your throat real quick and you are knocked out)  so you may want to go see a gastroenterologist.  If they are doing skin tests for gluten, that won't fully investigate the issue if you possibly have DH.  So make sure you get a full possible celiac workup.  In the end, if everything is inconclusive, eliminating gluten for a test period may let you see what it does to your symptoms, but don't go gluten free until after you have had the tests done.  (you have to be consuming gluten for it to show up right on the tests)

Second, even if the construction has moved on to another part of the building, air handlers and stuff may still be moving the particulates around, and they can hang around long after construction is gone.  If you are able to get away with it without people thinking you are crazy, maybe buy a cheap air purifier and keep it by your desk, and clean up your area, dust etc. on a regular basis.  If someone comes in to your office once a month to vacuum, see if you can do that as well to suck up any stuff that settled and keeps getting kicked back up.  It may even win you brownie points with the boss, haha.  Of course I am a crazy clean person, so this may be a little too crazy of a reaction for you  I think being asked to move to another building would be reasonable.  Let your HR know that you think the construction work is causing this rash, and they can hopefully help you.

Also try to wash your hair at least every other day, and put on a new pillowcase each time you wash your hair.  With my seasonal allergies someone recommended this to me, and it has made a world of difference with my breathing at night time.  I went to Ross and bought 4 cheap pillow cases to rotate through so I am not washing mine every day.  Whatever is possibly in the air will stick in your hair so you want to get it out as much as possible.

I hope you are able to find out more soon!  If you end up having to try or permanently go gluten free, this is the place to start

Laura

I got like 60 done at once on my back recently.  It really is not that bad.  The scratch is with a scratchy plastic knob thing, so it is just mildly unpleasant.  If you react, it will itch, but that wasn't too bad either.  When they finished up mine they put hydrocortisone cream on it which was nice.  The worst part for me was laying on my stomach for 15 minutes with my top off, haha.  But they gave me a paper shirt thing to wear and it was a girl doing it so not THAT bad.  

Apparently I was recommended for skin tests many times as a child but my mother didn't do it because she thought it was cruel and unusual and terrible, it really isn't.  Maybe in an infant or toddler who doesn't understand "hold still" but that is any medical test/procedure for kids that age.

Just make sure they pre-approve it through your insurance so you aren't stuck with a bill.  That goes for anything, though, and the doctors office will probably already do that because they like getting paid.

Paul that is so funny!  My parents had a little miniature dachshund who loved human food.  One day my mom cut herself a big slice of chocolate cake, sat down on the couch with it on a napkin and went to take a bite, before it got to her mouth the dog did a superhero move and swiped the whole piece of cake from her.  So if you eat near that dog you have to beware because he will take the food right out of your mouth!

My cat, her name is Kitty:

Open Original Shared Link

She likes bags, boxes, fresh laundry, and Q tips:

Open Original Shared Link

(I miss wing stop!!!!  haha)

Here is a funny picture for you all, one day I was carrying in groceries from the car and I hear a "Shhhhhhhhhhhh" and this trail was through my whole living room.  I cried, LOL

Open Original Shared Link

I like to steam veggies in the microwave, in a glass pyrex dish with lid.  Just put in a few tablespoons of water, and microwave til done.  They used to sell steamer baskets you could put in them, but I can't find them anymore.  

Oooohhh snickerdoodles... my favorite grocer just changed up their gluten-free section, I will have to see if these are there when I shop on Friday.  If they are, I will try them out and report back!  I really like their soft chocolate brownie cookies, but I try not to buy them as I destroy them in a few sittings.

I have seen this problem as well.  Or it will be the opposite, like your store carries 2 out of 30 products by a brand, and the website tells you they carry the full line, etc.  Especially with smaller companies, having a good locator function on the website can increase sales.

My day was complete when we arrived at the zoo at 3pm after a late start to the day, and we saw a sign that said "Brief appearance by the baby elephants at these times... last at 3:30"  So we waited with the crowd, they brought one out but they never said who it was, haha.  Being two months old it/he/she looked about the same as the pictures but was a little more plump  It made my day, though, with its hairy little rounded head.  I wish I could have hugged it!

By the way, Fort Worth Zoo is awesome overall, if any of you ever travel to the area it is worth a stop, unless it is 100 degrees outside in middle of summer.  Even then, if you can take the heat, most of the Zoo walkways and stuff have great shade.