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Guest DanceswithWolves

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Guest DanceswithWolves

Hello, I am a new member here and I thought I would pick everyone's brain a bit.

You see, for the last 6 months or so, I have been feeling like crap.

I moved to Dallas, Texas from Pennsylvania for a new job. Weeks passed and I noticed I was losing weight. I still could not figure out why but I knew I wasn't eating properly. I would still have the mini-black-outs and my eyes would galze over and get bloodshot. I would sit in my cubicle and have severe chills. My hands were so cold I had to go to the men's room and run them under hot water to get feeling back in them. I did some research on Pepcid and Prilosec and it seems that the active ingredient " Famotidine" .

Some of the side effects with taking them consist of depression, confusion, loss of appetite, anxiety and more.

These pills also contain Omeprazole.

Now when I look back... I'm beginning to think I was in a vicious circle. The new job was stessing me and I would have all this anxiety when I ate. Then I was taking Pepcid almost every day. My concentration was horrible. Cold sweats, blurred vison and red blood shot eyes. Heavy burping. These symptoms can all be caused by taking too much pepcid, prilosec etc.

Now I am trying to limit breads, chips, anything creamy like salad dressings so it does not bring on any GERD, therfore leading me to take these pills.

My life has been turned totally upside down by this.

One major thing I noticed was that every time I ate something, my stomach would bloat...bad! Now I did a lot of reading on GERD, and this has gotten me to eat slower. I quit drinking coffee and I have eased up on sodas.

After much thinking, I decided that it would be best to quit the job and move back to Pennsylvania so i could get my head on straight.

Basically, I caved in. I had a long talk with my friend that got me the job and I broke down in tears for about four hours. I explained that my concentration was always off, and I didn't feel well every day.

I have been to my doctor and all he can say is simply go on a gluten-free diet to narrow the possibilites.

Thing is I can't tell if it's just an ulcer or the actual celiac disease that is making me lose weight and have the worst GERD reactions.

I can do a blood test to test for Celiac but it's about $700. Sheeeeeesh!

I look horrible, my hair is growing out all uneven and I get chills in my hands and feet every now and then. I've explained all this to my doc, but I think he's a bit old fashioned and not up with nutritional/food allergies and diseases.

I guess what I'm concerned about is it seems that all of my symptoms are connected to my state of mind. I feel depressed at times but I don't know if it is being caused by the Gluten I'm ingesting or something else? If I am depressed, is that why I cannot gain any weight or is it because of malabsorbtion?

I feel so confused and lost. I actually get really frustrated becuase I can't even pack a lunch correctly when I have to go to work! There's nothing but fast food crap places around when I forget to pack a lunch.

I honestly don't know what to do.

:(


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Jnkmnky Collaborator

If you can't afford the testing, try the diet. Do you realize that the effects of a gluten free diet will not be noticable unless you are 100% gluten free? You can't cheat if you have this disease. You will not feel better. :) Some people feel better right away, some take months for the damage to heal and the "better" to sink in. There are many great posts here that list regular food items that are gluten free. You should search in the parents of children with celiac disease message board as well as the gluten free products message board. Here are some gluten free foods to get you started-

Post fruity and cocoa pebbles

Old el Paso taco sauce in the jar

taco shells

Hunt's Manwich sloppy joe sauce

Kraft velveeta cheese

Rice

Corn tortillas

Hormel salami

Bush's baked beans

Oscar Mayer bologna/bacon

Thai Kitchen has many gluten free products. Read labels

Find a health food store such as whole foods- and get yourself some Tinkyada pastas *they're the best*

You can order bread for sandwiches from Kinnikinnick

Open Original Shared Link

The white bread is great, the pizza crusts are great, the donuts are great.

You may be lactose intolerant for a few months due to villi damage if you have celiac disease. Perhaps you should limit dairy for awhile. Rice milk is a good alternative...or lactaid milk. Good luck.

nettiebeads Apprentice

Please try the diet. celiac disease is one of those autoimmune diseases that manifests itself in as many different ways as there are different people. The brain fog and lack of concentration is a good example. See, it isn't just that certain foods make you feel bad, it is also a malabsorption issue too. I find that one 200mcg of selenium helps me with concentration. It's cheap enough and you can find it at WalMart even. I have to brown bag for lunch - 1/2 hr for lunch and no eateries around. If nothing else, try rice cakes with pb. If you can stock your work space with that, then on bad days you would at least have something that is safe. Another issue is protein intake. I think the normal is 60 grams, Celiacs have to go higher, probably because of the malabsorption, or maybe something else. All I know is that I feel much better with more energy. Fish and chicken are good sources. Prowl the health food stores, you'll find stuff. Please let us know if you are having problems or successes after going gluten-free. After nine years I finally reached out because I was feeling so isolated because of celiac disease. In reading the posts, I found out that maybe I could STILL be getting cross contamination from the wooden spoons my husband (non celiac disease) and I were both using in cooking. Those went bye-bye last night. The celiac disease can be a major inconvenience, but it is possible to live with it and actually feel good. Hope this helps!

Merika Contributor

Yes, you can try the diet for free :) But $700 for the test??????? Promethius Labs in San Diego (one of the best labs around for celiac) charges only $200 something for the full panel. Mind you, you still have to add the doctors visit for the blood draw. I think my dh paid $35 extra for that.

Check around, because that price seems outrageous. Promethius will send you the test kit for free, and includes a postage paid box for return.

Merika

KaitiUSA Enthusiast
Yes, you can try the diet for free :) But $700 for the test??????? Promethius Labs in San Diego (one of the best labs around for celiac) charges only $200 something for the full panel. Mind you, you still have to add the doctors visit for the blood draw. I think my dh paid $35 extra for that.

Check around, because that price seems outrageous. Promethius will send you the test kit for free, and includes a postage paid box for return.

Merika

<{POST_SNAPBACK}>

I had the test done at Prometheus and the full panel plus gene test was like 1200 something I believe and insurance(which we have good insurance) covered only some and we ended up paying like 700 some dollars.

Maybe I had other tests from there as well but it was really expensive.

They are a great lab for celiac though...the best of the best

Jnkmnky Collaborator

We used prometheus and it was 300 each. I think.. Anyway, it wasn't cheap. I could be quoting what was covered by my insurance. I can't remember.

terri Contributor

It sounds like you have some of the symptoms for sure. I have the same problems with the cold hands or they turn bright red! The gerd is a definite forerunner and the mood swings are also indicative. Blood tests can be negative and you can still have the disease. Try the diet for two weeks and see how you feel. If you feel better than stick with it! That is the bottom line. Good luck!


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higgins Newbie

My doctor would look at you and say: "$700 v. your life...$700 v. your life...$700 v. your life...(long enough for it to sink in).

That may be a bit harsh; however, if you do in fact have Celiac disease you will want to do something about it ASAP. Can't you get scoped? I think that is the definitive diagnostic tool these days.

Richard

P.S. Check the pills out too.

skinnyboi2004 Newbie
If you can't afford the testing, try the diet.  Do you realize that the effects of a gluten free diet will not be noticable unless you are 100% gluten free?  You can't cheat if you have this disease.  You will not feel better.  :)  Some people feel better right away, some take months for the damage to heal and the "better" to sink in.  There are many great posts here that list regular food items that are gluten free.  You should search in the parents of children with celiac disease message board as well as the gluten free products message board.  Here are some gluten free foods to get you started-

Post fruity and cocoa pebbles

Old el Paso taco sauce in the jar

taco shells

Hunt's Manwich sloppy joe sauce

Kraft velveeta cheese

Rice

Corn tortillas

Hormel salami

Bush's baked beans

Oscar Mayer bologna/bacon

Thai Kitchen has many gluten free products.  Read labels

Find a health food store such as whole foods- and get yourself some Tinkyada pastas *they're the best*

You can order bread for sandwiches from Kinnikinnick

Open Original Shared Link

The white bread is great, the pizza crusts are great, the donuts are great.

You may be lactose intolerant for a few months due to villi damage if you have celiac disease.  Perhaps you should limit dairy for awhile.  Rice milk is a good alternative...or lactaid milk. Good luck.

<{POST_SNAPBACK}>

Hi I am a new member and am so thankful for the list of Brand Name foods u posted for the last member. Is there more to the list or can you direct me to an area that would have a larger list of Brand Name Foods that are gluten free?

Thank you so much.

Skinnyboi2004

KaitiUSA Enthusiast
Hi I am a new member and am so thankful for the list of Brand Name foods u posted for the last member. Is there more to the list or can you direct me to an area that would have a larger list of Brand Name Foods that are gluten free?

Thank you so much.

Skinnyboi2004

<{POST_SNAPBACK}>

Well this list of brands will clearly list wheat,rye,barley,oats on the label or it will be safe. They will not hide anything even under otherwise questionable ingredients:

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

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

Jnkmnky Collaborator

skinnyboi-

Here's a link done for a new poster that lists many products you can eat.

Open Original Shared Link

As I said above, you can scour the different message boards and find many good posts with helpful advice about what to eat. :)

Guest DanceswithWolves

Thanks so much for all your help!

I would have checked this board earlier for replies but I guess I didn't set the email notifictions to "on".

One of the products listed was "General Mills". I thought all the GM cereals have whole grain? Isn't that bad for Celiacs as well?

Also, what about beer & Hot pockets?

I have an old list that I ripped out of a medical book from the 80's and it said beer was bad but wine is OK.

Are most of you Celiacs really skinney too?

Rachel--24 Collaborator
I can do a blood test to test for Celiac but it's about $700. Sheeeeeesh!

<{POST_SNAPBACK}>

Another option would be Enterolab testing. Its still costly but not close to what that blood test would cost. I did Enterolab because you don't have to be eating gluten at the time of testing. If you get all the tests done its $370 (including shipping).

Oh yeah...I'm really skinny too :(

My enterolab results showed bad malabsorption.

KaitiUSA Enthusiast
Thanks so much for all your help!

I would have checked this board earlier for replies but I guess I didn't set the email notifictions to "on".

One of the products listed was "General Mills". I thought all the GM cereals have whole grain? Isn't that bad for Celiacs as well?

Also, what about beer & Hot pockets?

I have an old list that I ripped out of a medical book from the 80's and it said beer was bad but wine is OK.

Are most of you Celiacs really skinney too?

<{POST_SNAPBACK}>

General Mills cereals we can't have but General Mills has alot of other products we can have.

Beer and hot pockets are both no's for us but alot of wines are ok.

Alot of celiacs are skinny but alot are just the opposite. So it varies from person to person.

tarnalberry Community Regular

I just wanted to echo the idea that trying the diet is a good way to go. Actually, your doctor sounds fairly well informed and like he/she is trying to work with you, though there may be limitations (like money).

Celiac can definitely cause neurologic issues (including depressions, lack of concentration, peripheral neuropathy, etc.), beside the bloating you mention.

Please do try the diet - strictly! NO CHEATING - for at least 4-6 weeks. Keep it simple with naturally gluten-free foods (to reduce the risk of cross contamination). It may require a bit of cooking, but needn't require a lot, nor difficult cooking.

Jnkmnky Collaborator

Dancesw/wolves.... You definitely can't have every food made by the manufacturer's listed in Kaiti's post. Those companies are helpful because when you see a word like "modified food starch", you don't have to call the company to see if the mfs is a gluten containing source. You can't have hot pockets, beer, whole grain cereals, etc... Gluten is in many, many products you wouldn't suspect...like twizzlers for example. Keep posting and asking questions so you have a real handle on the diet. You will not feel the effects of a gluten free diet if you have even small accidents.

KaitiUSA Enthusiast

DancesWithWolves-The manufacturers list I posted are ones that will not hide it. They will have wheat,rye,barley,oats clearly on the label or will be safe. There are some products we can and can't have. These brands make it easier for us though because we don't have to look for the natural flavorings, modified food starch, and analyze all the ingredients...we just have to look for wheat,rye,barley,oats. Now, with brands other then the ones listed you always have to check

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