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Newbie Living In Alaska- Wanna Say Hello


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#1 Yenni

 
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Posted 20 July 2006 - 03:03 PM

Hello! I just wanted to say hello. I have been lurking around here for a couple of months and became a member yesterday.
I have had LOTS of problems with my stomach the last 4 years. Pain, gas, constant diarrhea, nausea and 24/7 heartburn that wouldn't go away even on double dose of Protonix and other additional acid reducer. I started reading about Gluten Intolerance a couple of months ago and I realized I had like 75% of all the symptoms in a long list of them. Well, so I decided to stop eating Gluten (April this year) just to see what would happen. The bloating and pain got much better only after a couple of days and I have gotten gradually much better over all. I have more energy, my heartburn is almost not there at all and I rarely have bloating at all.
It has gone slowly but there is a MASSIVE difference in how my stomach is today in compared to what it has been like the last 4 years.
I had a blood test taken and it was negative. The doctor seemed to think I might have Gluten Intolerance even if it was negative when I have become so much better. I hadn’t been eating Gluten for 3 weeks when the test was taken, so I am not sure if that could be a factor.
I am pretty happy with how much better I have become so I intend to keep on doing this even if it is hard. I miss eating out really bad and I hate watching the rest of the family eat good stuff I can't have. But it is all worth it to get out of the hell I have been through with my stomach the last 4 years. I am almost happy I seem to have gluten intolerance. At least I know what it is (probably) and I can do something about it. For the longest time I just went from doctor to doctor not getting any help at all. They gave me pills and told me I had IBS (which my symptoms never really seemed to match up with).

Well, I wanted to say hello. I am glad I have found this place.

Oh, and I live in Anchorage Alaska. It would be great to talk to someone that lives up here too. Get some tips on where to get food and stuff.

Jenny
  • 0
One Celiac gene and one gluten intolerance gene (HLA-DQ 2,1).
Grain free, casein free, soy/legume free + a bunch of allergies I have had since I was a child (stone fruits, nuts..carrots)
Following the Specific Carbohydrate Diet, but no nuts, legumes or casein.

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#2 rinne

 
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Posted 20 July 2006 - 03:11 PM

Hi Jenny and welcome.

This is a great forum, I have learned so much here.

I miss eating out really bad and I hate watching the rest of the family eat good stuff I can't have. But it is all worth it to get out of the hell I have been through with my stomach the last 4 years. I am almost happy I seem to have gluten intolerance. At least I know what it is (probably) and I can do something about it. For the longest time I just went from doctor to doctor not getting any help at all. They gave me pills and told me I had IBS (which my symptoms never really seemed to match up with).


I know how you feel, when every day is suffering then letting go of foods that hurt is not so hard. I am finding, now gluten free for a couple of months, that I do not miss them but I do miss eating out.
  • 0
A family with Celiac disease, two brothers and two sisters.

Lyme Disease, Diagnosis October 19, 2006

May 2006 - December 2008 Gluten and Dairy Free

December 2008, while seeing improvement on the gluten free diet, I did not recover and so in December of 2008 began the SCD and now have hope for recovery.

#3 CarlaB

 
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Posted 20 July 2006 - 03:15 PM

Welcome!

My tests came out negative, too, but my doc today said I had the clinical proof I needed with my dietary response. I also used Enterolab, but the dietary response is the real proof.

I don't know about Anchorage and what all you have there, but there are a lot of restaurants that have gluten-free menus -- PF Changs, Cheeseburger in Paradise, Carrabas, Maggianos (the chef comes to your table, not an actual menu), Bonefish Grill.
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gluten-free 12/05

diagnosed with Lyme Disease 12/06

#4 AndreaB

 
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Posted 20 July 2006 - 03:17 PM

Welcom Jenny! Glad you signed on. :)

I live in Washington....the closest state to you (unless Hawaii is closer). :P
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Andrea

Enterolab positive results only June 06:
Me HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0301; Serologic equivalent: HLA-DQ 2,3 (subtype 2, 7)
Husband HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0302; Serologic equivalent: HLA-DQ 2,3 (subtype 2,8)



The whole family has been soy free since February, gluten free since June 2006.

The whole family went back to a gluten diet October 2011.  We never had official testing done and I decided to give gluten a go again.  At this point I've decided to work on making some gluten free things again, though healthwise everyone seems to be fine.  The decision to add gluten back in was also made based on other things I'd read about the 2nd sequence of genes.  It is my belief that we had a gluten intolerance, but thanks to things I've learned here, I know more what to keep an eye on.  If you have a confirmed case of celiac, please don't go back to gluten, it's a lifelong lifestyle change.


#5 Yenni

 
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Posted 20 July 2006 - 03:56 PM

Hello and thank you all for the warm welcome! :)

AndreaB: Yep, Washington is the closest state. ;)


CarlaB; They don't have any of the places you mentioned up here. :(
I was looking at the Outback gluten free menu yesterday for the first time. I am a little nervous about eating out still. I feel like I have gotten "cross contaminated" so easily doing this. Even with stuff that is suppoesed to be gluten free (like rice that is made in the same factory as creme of weat). I am afraid people will not realize how easy it is to get glutens in the food.
My husband has been really good with all of this but his family is pretty dreadfull about it all. No understanding at all really and they like cross crontaminating things. Well, so I am worried about eating out where I can't see what is happening with my food.

How do you all do it? Eating out I mean.
And how do you all cope with non-understanding relatives?


I guess I do not feel so comfortable with this Gluten free eating yet, so I am feeling aquard telling others to be careful with my food. If you know what I mean.

Any books you guys think I should read? I have been looking around some and got The Gluten Free Bible. Haven't read it all yet though. So much to think of. Most people seem to think it is easy to avoid the stuff but I feel like it is almost science. :blink:
  • 0
One Celiac gene and one gluten intolerance gene (HLA-DQ 2,1).
Grain free, casein free, soy/legume free + a bunch of allergies I have had since I was a child (stone fruits, nuts..carrots)
Following the Specific Carbohydrate Diet, but no nuts, legumes or casein.

#6 Aerin328

 
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Posted 20 July 2006 - 04:05 PM

AkJenny, hello! I am also new to this site, recently diagnosed Celiac (2 weeks ago).

I don't have the experience that many of these wise forum members have, but so far I have found Outback to be most accomodating. In fact, if you mention you have gluten intolerance, their cooks will even scrape the grill and change their gloves. I hear they even have a gluten-free brownie... (could it be??)

As for the testing...
My PCP said my testing was negative. "Well, it's kinda high, but the people who are 'positive' have that number [Gliadin IgG] in the hundreds." Thanks doc. So I went to another. The second doc, whose own DAUGHTER happens to have Celiac, said, "Yeah... this result is 'extremely positive.' You definitely have it." So yeah, doctors, as I've discovered this last three months of illness, are often unwise. It must be hard for you to stick to gluten-free w/out a diagnosis, but praise be to you for sticking with it none-the-less! :)


Lastly - does anyone know how to tell if Rice has been produced in a factory with wheat?? My god, I've been devouring rice as it seems the only carb hope left to me... (I'm starting to freak out about phantam gluten everywhere!)
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Gluten free since 7/6/06. :)

Enterolab Results positive 8/24/06:
Antigliadin IgA 33 (Normal Range <10 Units)
Antitissue Transglutaminase IgA 16 Units (Normal Range <10 Units)
Anti-casein (cow’s milk) IgA antibody 21 Units (Normal Range <10 Units)
Serologic equivalent: HLA-DQ 3,1 (Subtype 8,5)

Blood test somewhat positive 7/6/06:
Antigliadin IgG (only) 57 (Normal range <20 units)

"Perspective is Reality"

#7 Yenni

 
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Posted 20 July 2006 - 04:19 PM

It must be hard for you to stick to gluten-free w/out a diagnosis, but praise be to you for sticking with it none-the-less! :)
Lastly - does anyone know how to tell if Rice has been produced in a factory with wheat?? My god, I've been devouring rice as it seems the only carb hope left to me... (I'm starting to freak out about phantam gluten everywhere!)


I have felt such a big difference and the fact that I had so many symptoms...Well it made me feel like "this is it!!" when I read about it and stopped eating Gluten. I still have doubts some days. The recovery has been slow. But if you have such a nasty heartburn as I used to have (it used to make me sweat and I got sores in my throat) and nothing anyone did would make it better...and now I have days I don't have any at all. Weeks even. I wake up without a sore throat in the morning. Well, it isn't that hard to keep on even if a doctor hasn't officially given me a diagnose. My husband always keeps on telling me it doesn't matter what they say or if I get that biopsy. This is proof enough.

I think I got cross contaminated by the Nabisco brand (orange box). They make both Crème of wheat and rice. I kept on having heartburn and stuff while I ate it and once I stopped eating it, it went away.

Maybe I am paranoid but I like to buy thinks that say stuff like "Has been produced in factory with no gluten".. and stuff. I am very new at this though.

:)
  • 0
One Celiac gene and one gluten intolerance gene (HLA-DQ 2,1).
Grain free, casein free, soy/legume free + a bunch of allergies I have had since I was a child (stone fruits, nuts..carrots)
Following the Specific Carbohydrate Diet, but no nuts, legumes or casein.

#8 Aerin328

 
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Posted 20 July 2006 - 04:40 PM

Maybe I am paranoid but I like to buy thinks that say stuff like "Has been produced in factory with no gluten".. and stuff. I am very new at this though.

:)



Not paranoid! Smart! I am also new to this and I think it's "normal" to so carefully read the labels.
  • 0
Gluten free since 7/6/06. :)

Enterolab Results positive 8/24/06:
Antigliadin IgA 33 (Normal Range <10 Units)
Antitissue Transglutaminase IgA 16 Units (Normal Range <10 Units)
Anti-casein (cow’s milk) IgA antibody 21 Units (Normal Range <10 Units)
Serologic equivalent: HLA-DQ 3,1 (Subtype 8,5)

Blood test somewhat positive 7/6/06:
Antigliadin IgG (only) 57 (Normal range <20 units)

"Perspective is Reality"

#9 CarlaB

 
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Posted 20 July 2006 - 04:51 PM

I have never had a problem with Outback, and yes, their brownie is gluten-free!! It's a wonderful ice cream sundae!!!

I mostly stick to things that are naturally gluten-free, like meat, fish, eggs, veggie, and fruit. I buy brown rice from the health food section of the grocery, no particular brand. I also make potatoes once a week or so. Tonight I made Tinkiyada pasta and it was wonderful. I try to stay away from processed foods, but I buy lots of energy bars -- Lara Bars, Bumblebars, Maya Bars, Clif Nectar (be sure they're Nectar, regular Clif is not gluten-free) -- to carry with me.

As far as eating out, I am down to twice per month. I only go to places that I know I can eat safely, and I don't take chances. I've been gluten-free for 7 months and have finally realized it's not worth eating out!!

As for relatives, with six kids, they usually come over here if we get together for a holiday. I went to an uncle's house for a cookout and brought my own brats and foil so they could be safely cooked on the grill (regular charcoal is not gluten-free, btw, you have to get natural charcoal). I ate potato chips with my brats.

I enjoyed gluten-free Bible, but be careful because much of what she says regarding specific products is outdated or just wrong.
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gluten-free 12/05

diagnosed with Lyme Disease 12/06

#10 VegasCeliacBuckeye

 
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Posted 20 July 2006 - 05:03 PM

Jenny,

Welcome to the board!

A word to the wise regarding the Gluten Free Bible -- some posters here beleive that the book contains inaccuracies about food and the diet.

I would recommend "Gluten Free for Dummies" by Dana Korn -- she is awesome.

Also, to increase your education on new thoughts on Celiac and Non-Celiac gluten sensitivity, you should read "Dangerous Grains" -- really good book (a bit dry, but the information and research is cool).

I think there is another regular poster on here from Alaska -- Lesliean is her user name.

Here is a link when she posted -- http://www.glutenfre...mp;#entry166710

also, the Glacier Bear Bed & Breakfast and the Jewel Lake B&B offer gluten free meals (I don't know if you have to stay there or not....)

Outback is always a good choice. so is Lonestar Steakhouse (Steak, chicken and a big ol sweet potato!)

Hope this helps...
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#11 Yenni

 
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Posted 20 July 2006 - 05:04 PM

As for relatives, with six kids, they usually come over here if we get together for a holiday. I went to an uncle's house for a cookout and brought my own brats and foil so they could be safely cooked on the grill (regular charcoal is not gluten-free, btw, you have to get natural charcoal). I ate potato chips with my brats.



My gosh! I had no idea charcoals could have gluten in them. :blink: The things you learn.
(That can explain things for me actually. I have felt weird after eating grilled hamburger meat. I couldn't get why. Now I know why.)

My problem is that we actually live with my husband's family right now. There are bread crums and yellow cheese everywhere. :P No one has any food allergy or any intolerance in the family really (one can't have diary but it doesn't seem to help with understanding still) so they just seem to think I am weird. Makes me frustrated. (I make my own food, but they think it is just "not eating bread" kinda.)
We had a birthday here a couple of weeks ago and my sister in law got asked not to bring pie. I was just so tired of watching them all eat it infront of me. I have to watch them eat desert like at least once a week. I had bought some gluten free brownie I was gonna make. Well, she bought the pie anyways and no body tasted my brownies. :unsure: Well, my husband did. He was actually really mad at his sister. Hehe

We are hopefully moving out of here within the year. So I will not have to deal with them any more. If I go for a vistit I'll just bring my own stuff. But for now, it is hard. It's not making things easier that is for sure.
  • 0
One Celiac gene and one gluten intolerance gene (HLA-DQ 2,1).
Grain free, casein free, soy/legume free + a bunch of allergies I have had since I was a child (stone fruits, nuts..carrots)
Following the Specific Carbohydrate Diet, but no nuts, legumes or casein.

#12 CarlaB

 
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Posted 20 July 2006 - 05:11 PM

My gosh! I had no idea charcoals could have gluten in them. :blink: The things you learn.
(That can explain things for me actually. I have felt weird after eating grilled hamburger meat. I couldn't get why. Now I know why.)

My problem is that we actually live with my husband family right now. There are bread crums and yellow cheese everywhere. :P
I usually make my own food now. No one has any food allergy or any intolerance in the family really (one can't have diary but it doesn't seem to help with understanding still) so they just seem to think I am weird. Makes me frustrated.
We had a birthday here a couple of weeks ago and my sister in law got asked not to bring pie. I was just so tired of watching them all eat it infront of me. I have to watch them eat desert like at least once a week. I had bought some gluten free brownie I was gonna make. Well, she bought the pie anyways and no body tasted my brownies. :unsure:

We are hopefully moving out of here within the year. So I will not have to deal with them any more. If I go for a vistit I'll just bring my own stuff. But for now, it is hard. It's not making things easier that is for sure.


I'd be glad if they left my brownies alone -- more for me!!!! I can't keep my family's hands off them! I brought some gluten-free goodies to a party and they got all eaten up. People were amazed, they thought they'd taste bad ... these are people who normally eat low-fat, so they were exeptionally good since they were high in fat!!! Just always be sure you have some snacks around that you like. You can't stop others from eating in front of you, and it's not really fair to anyway. I understand how you feel, it's tough sometimes.

Gluten-free For Dummies is much better than The Gluten-free Bible. The Gluten-free Bible was the first book I read 7 months ago, and I appreciated her humor and acceptance of celiac, and her ability to go into a restaurant and talk with the chef. It does have serious inaccuracies, for example, she says Haagen Dazs dulce de leche is not gluten-free, but it is gluten-free!
  • 0
gluten-free 12/05

diagnosed with Lyme Disease 12/06

#13 Yenni

 
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Posted 20 July 2006 - 05:11 PM

Jenny,

Welcome to the board!

A word to the wise regarding the Gluten Free Bible -- some posters here beleive that the book contains inaccuracies about food and the diet.

I would recommend "Gluten Free for Dummies" by Dana Korn -- she is awesome.

Also, to increase your education on new thoughts on Celiac and Non-Celiac gluten sensitivity, you should read "Dangerous Grains" -- really good book (a bit dry, but the information and research is cool).

I think there is another regular poster on here from Alaska -- Lesliean is her user name.

Here is a link when she posted -- http://www.glutenfre...mp;#entry166710

also, the Glacier Bear Bed & Breakfast and the Jewel Lake B&B offer gluten free meals (I don't know if you have to stay there or not....)

Outback is always a good choice. so is Lonestar Steakhouse (Steak, chicken and a big ol sweet potato!)

Hope this helps...


Thanks for the tips! Much appreciated! I'll check them out. I think I have seen that Gluten Free for Dummies book.
  • 0
One Celiac gene and one gluten intolerance gene (HLA-DQ 2,1).
Grain free, casein free, soy/legume free + a bunch of allergies I have had since I was a child (stone fruits, nuts..carrots)
Following the Specific Carbohydrate Diet, but no nuts, legumes or casein.

#14 Ursa Major

 
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Posted 20 July 2006 - 05:24 PM

Hi Jenny, and welcome. I am like you, the doctors were clueless, and I figured it out myself last October. When I told my doctor I have celiac disease, and how much better I felt gluten-free, she agreed with me that it must be celiac disease. She said she knew I had all the symptoms, but she didn't think it could be celiac disease because I was gaining weight, instead of losing it (I gave her a good information session on celiac disease, and let her know that unexplained weight gain is a common symptom of celiac disease, too).

I also had a sore throat all the time (not only caused by celiac disease, though, but other intolerances as well), and stomach aches and many other problems, that are gone now. Well, I had those many years before I obviously went into full-blown celiac disease last May, with chronic D for six months straight. All those problems stopped gluten-free. No other proof is needed, in my opinion.
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I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

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#15 Yenni

 
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Posted 20 July 2006 - 05:58 PM

She said she knew I had all the symptoms, but she didn't think it could be celiac disease because I was gaining weight, instead of losing it (I gave her a good information session on celiac disease, and let her know that unexplained weight gain is a common symptom of celiac disease, too).


I gained weight out of the blue last summer. I never understood why because I never changed the way I ate or excersised. Could have been gluten intolerance too then.

I still have symptoms left. It isn't all gone, but slowly getting better one by one. Something I realized today too is that I can actually think better.


I have heard there is a difference between Celiac disease and Gluten intolenance. Is that true?
  • 0
One Celiac gene and one gluten intolerance gene (HLA-DQ 2,1).
Grain free, casein free, soy/legume free + a bunch of allergies I have had since I was a child (stone fruits, nuts..carrots)
Following the Specific Carbohydrate Diet, but no nuts, legumes or casein.




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