njbeachbum

Bumping....

Hi again - surprised that I didn't hear from anyone else dealing with EoE and Celiac Disease.  I got my Basic Food Allergy panel results back on Friday and it was kind of a shocking punch in the gut (no pun intended).

The RAST testing shows that I'm having IgE responses to:

Corn - Class 2

Eggs, Soy, and Peanut - Class 3

And now my journey begins again - through food labels and frustration and grocery store woes!

Good morning all!  It's been a long time since I've posted here.  I was diagnosed as Celiac at the end of 2007 and have since taken control of my disease and eating in a way that makes me very proud.  I host holidays like Thanksgiving, Christmas & Easter that are 100% gluten free and neither me or my family ever feels deprived.

But following up a month or so of recurring stomach pain, I made an appointment to see my gastro for the first time in a couple of years.  The pain was an upper abdominal burning sensation that would come and go and at some points was quite severe.  Of course, my gastro appointment was 3 weeks out, so I saw my primary care in the meantime.  He prescribed Nexium (shocker), drew some blood and sent me for an ultrasound which turned up nothing.  I had already put myself on a fairly bland diet to keep the acid to a minimum, was taking a 2 week course of Prilosec OTC, cut out drinking and limited my coffee/caffeine.

Fast forward to gastro appointment - he notes that in my bloodwork, my Eosinophils were high (the number was 12 and the high end of the range is typically 5-7), which he said indicates that I've most likely got some food allergies. He then flips through my chart and says that in my last endoscopy they found evidence of Eosinophilic Esophagitis (PS, I was never told about this finding... I did not get a copy of the report because the endo was just a follow up on my Celiac diagnosis... and at the procedure, he said there was no further evidence of Celiac disease present).

So now I had an endoscopy on Monday, 4/29 and he said there is clear evidence of EoE.  I had been sent for a "basic food allergy panel" blood test, but now I have no idea what the next steps are.  I'm 35, going on 36 in July.  Are there any other adults out there who have been diagnosed with EoE as adults?  I'm now eliminating things from my diet, but I feel very scattered.  What are the best ways to identify your EoE trigger foods?  This is much harder than Celiac because it's not just gluten and the trigger is now just a big mystery.

I found an allergist nearby that lists EoE as one of her specialties, so I will be reaching out for an appointment there.

I'm just very frustrated and looking to see if there is anyone that has dealt with this as an adult (most of what I read about EoE refers to very young children).  And also, my eosinophils were only a 12, which does not seem very high.  I wonder if that can indicate that my triggers may only be a couple of items.

Thanks for listening and for any help you can provide!

I had a feeling these were a bigger problem for people than I thought!

I've had larabars but they are low on protein... I'm looking for something with whey and up to 20g per bar if possible.

The only thing I crave that I can't find a gluten free version of is phyllo. I would love to scarf down a whole package of raspberry turnovers or a sheet of baklava.

Raven-

I'm 33 years old and I was diagnosed 3 years ago... and I didn't truly find my cooking "mojo" until I was gluten free. I love watching Food Network TV and I pride myself on the fact that I've been able to make almost any recipe I see in a gluten free version.

UNTIL you see those Phyllo dough recipes.... my partner is Greek, so he grew up with it. And it's impossible... there really is no gluten-free substitute! Sad...

Building off that, I love to watch the show "The Best Thing I Ever Ate" on food network... and the Neely's were scarfing down a huge piece of pound cake with caramel sauce all over it.... and it looked SOOO good. I wanted a big huge bite, but then I realized that I could make it if I wanted to

I've been eating Think Thin protein bars for awhile and I really enjoy the taste and the quick dose of protein you can get from one of them. I've always trusted them to be gluten free and healthy, and they are extremely filling. I work a 9-5 office job, and I would always have one at around 4 as a pick me up at the end of the day. But, in the past couple of months I started to notice that I would get very gassy and bloated in the evening. I didn't recall having any problems before, so I never made the connection to the Think Thin bars. Then I did some reading about the Malitol (sugar alcohol) that is used in these bars, and realized that it causes exactly those side effects. I stopped eating them and the symptoms subsided.

Has anyone else had this kind of reaction to Think Thin bars?

And more importantly, what other protein bars are you using out there? I loved that you got 20g of protein from one of those.... I tried the Jay Robb bars from Whole Foods and they were pretty good, but cost 2.99 each!

Are there any other gluten free protein bars out there? I'd prefer whey protein to soy, but whatever I can get really!

I am sure not everyone feels they have to be so careful and it is a personal decision.

I agree with you 100%, it is always a very personal decision - and honestly, there are enough personal care products out there that don't have gluten in them, so it is easy to avoid. But if you are really stuck on one particular shampoo, then only you can decide.

Let's be realistic here - think about the percentage of the shampoo that is made up of wheat... maybe 1 or 2% of the final product, but probably much less? Then let's think about how much shampoo you actually use for your hair in the shower. Then let's think about how much could POSSIBLY get into your mouth. You are probably looking at more risk from eating Tostitos that could be cross contaminated from equipment that handle wheat products. I'm not saying that my word is the "end all" of the conversation, but I'm saying that everyone is in charge of the risk that they are willing to take, and it's better to not cause mass hysteria on this site by telling people that using shampoo with wheat at the bottom of the ingredients will make them very sick. I've been gluten-free for 3 years and I have used on and off the Paul Mitchell Tea Tree Shampoo that has wheat in the ingredients. It doesn't make me sick because I don't eat it by the spoonful.

If you're not eating it, then I really wouldn't worry about cross contamination.

i definitely wouldn't say that Udi's is settling.... it's excellent sandwich bread! but for cinnamon raisin, try French Meadows... they have a great gluten-free version

Awesome, thanks! Casein protein is the best at night because it's slower absorbing right? A good option is always a cup of greek yogurt before bed for a dose of about 15g of protein.

just an idea for a quick crust....

my partner made a quiche one day and for the crust he used corn chex - just pulverized them in the food processor with melted butter until it formed a sticky, crumbly mixture. He pressed it into the pie plate, filled it and baked and it was fantastic. The eggy quiche mixture seemed to seep into the crust and help it harden and stay together. It sliced beautifully...

try it!!

Hi Lisa -

I know this thread is a couple of months old, but I saw that you stopped eating the Think Thin bars because they were making you sick. I've been eating these for over a year now and just recently started to notice that I was getting very gassy and bloated in the late afternoon/evening (I eat one everyday at 4pm when I'm at work, like clockwork). I finally realized that this could be causing the problem - I know a lot of people have trouble with Malitol and other similar sugar alcohols. Have you found a good substitute?

Hope you are feeling well.

-Joe

Hi Patti!

Thanks for the info - I have lived in Lakewood near Ocean County Park for about 7 years or so. Your list is great... I did not know about Mileto in PPB, so I'll have to check that one out. I've eaten at Outback in Brick many times and I've usually felt fine afterwards. I usually just get the filet with a sweet potato and a plain salad with oil & vinegar, so I don't take many risks. But Carraba's has made me feel yucky most times that I've eaten there.

I'll have to try the Italian place in the Stop & Shop plaza - that supermarket is great and has an excellent selection. I always get my Aleia's gluten free stuffing mix there around thanksgiving! (And various other wonderful items)

Take it easy,

Joe

Hey thanks Wheatfreedude! I appreciate the response. I picked up some of the 100% Whey at Vitamin Shoppe this weekend and tried it out this morning. I might try out the 100% Casein for overnight workout recovery too. The 100% Whey really mixes much smoother than the other stuff I used and the Vanilla Ice Cream flavor is quite tasty!

I use the Insanity workout program (from beachbody) in the AM and need a really substantial recovery drink to fuel my muscles and get myself moving through the rest of the day. I saw great results from that program in my first round and I never even used their nutrition guide - it's too difficult for a Celiac to "adapt" a meal plan like that. Anyway, thanks again and it's great to see other fit/active Celiacs out there

Breakfast is the one meal that worries me - most breakfast places are quick turnaround and they've got all kinds of stuff flying onto and off of the same grill. I like the idea of asking for a clean pan off of the main grill... shockingly, I never thought of that.

What I do for breakfast that is almost always a safe bet - as for a couple of hard boiled eggs! Most places will do that for you. Then you can get some fresh fruit on the side - maybe a banana or some places sell melon, berries, etc. And of course, COFFEE!! the best part of breakfast

Enjoy and good luck!

OK - I got this response from Optimum Nutrition about their protein products. Has anyone tried these?

Dear Joe,

Thank you for your interest in Optimum Nutrition products. The

following products are those to avoid; those which absolutely contain

gluten:

100% Whey Gold Standard-Cookies n' Cream (cookie pieces)

100% Casein Gold Standard -Cookies n' cream (cookie pieces)

Serious Mass-all flavors(glutamine peptides)

Aftermax-all flavors (glutamine peptides)

Pro Complex-all flavors (glutamine peptides)

Pro Complex Gainer-all flavors (glutamine peptides)

Nitro-Core 24 - all flavors (glutamine peptides)

Lift Bar - Cookies & Cream (glutamine peptides & cookie pieces)

OPD bar - All flavors (wheat protein isolate)

Steel bar (the one in new packaging/12 count box)- all flavors (wheat

protein isolate)

Wholly Oats Bar -all flavors (wheat protein isolate)

100 % Whey Crisp Bar - all flavors

No Regrets Bar - all flavors

Platinum Hydrowhey -Cookies & Cream (cookie pieces)

*To the best of our knowledge these are the only products that contain

gluten. While we are not adding gluten to our other products, we cannot

say with 100% certainty that our other products are gluten-free. We use

the same equipment to make products with and without gluten. Although

the equipment is cleaned in-between, trace amounts of gluten may remain.

Best of health!

Rebecca Johnsen

Consumer Affairs Rep

Optimum Nutrition/American Body Building

1-800-705-5226

I just starting to find and use Udi's bread and it's the best bread out there. It is unique from all other gluten free breads that I've tried in that you can defrost it by leaving it out on the counter for 10-15 minutes and it is still edible! Most others need to be nuked and toasted slightly to make it taste right.

Enjoy!

BUMP

Anyone?? Pretty, pretty please?

OK, it's been a while since I posted here - hi guys!

I've been using Biochem Sports whey protein for a very long time and I just started to make a possible connection between the Stevia that they use as a sweetener and my frequent headaches.

I'm looking for a whey protein powder that is confirmed gluten free by the manufacturer and does not use Stevia or artificial sweeteners (aspartame, sucralose, etc.)

Any ideas? I'm having a hard time finding anything that meets my criteria

Thumann's hot dogs are my absolute favorite and they are certified gluten free by the GFCO (check for the logo). It is rare that I eat something like a hot dog, but now that summer is upon us and there are bbq's popping up all over the place... well, sometimes it's ok to treat yourself

i really enjoy the BC yellow cake mix... based on some reviews online, i've added one package of jell-o pudding mix and one cup of either sour cream, buttermilk or yogurt... in addition to the cake mix direction's ingredients. it makes a much more moist and delish cake.

i've also tried the quick carrot cake recipe on the BC website. i LOVE that recipe... makes perfect little carrot cake cupcakes, with BC cream cheese icing (also gluten-free!)

i've made the best cheesecakes using Mi-Del or Pamela's cookie crumbs as a great cookie crust. zip 'em in the food processer and stir in some melted butter until you can press it into your springform. Really any gluten-free cookies work as long as they are dry and crunchy. My favorite is chocolate cookies in the crust or Mi-Del's pecan shortbread.

anyway, i eat ghirardelli's white chocolate all the time. they are a safe brand... just check the labels.

enjoy!

i have the Kitchen Aid artisan stand mixer.... absolutely awesome for my gluten-free needs. They are regularly about $300, but get one at Kohls when they have a big sale and use your 15/20/30% off coupon. A great deal and a great kitchen tool!!

oh man i got excited there for a minute. i've been dying to find pre-made gluten free puff pastry and filo (phyllo) dough. one can dream, right?

i almost always stick to kraft and newman's own dressings, because they have clear labeling policies. the only dressings that i've seen that have gluten are the asian inspired dressings that use soy sauce. salad dressings are pretty low risk as far as i'm concerned