Hi, This is my first post! I have been reading posts for about a month and am so impressed with the level of support to each other. Thus far, all of you have been a godsend!

But, now I hit a wall. After endless reading I am convinced I am a celiac. I went on a gluten-free diet before a doctor suggested it or tested for it. Of course I had amazing relief! Talked to my general doctor and he is 100% behind me and wrote a great note to my insurance company requesting they pay for genetic testing in the "high likelihood" that I have this disease.

Problem is:
1) The insurance company wants me to see a GI and have a "work up including colonoscopy" to officially diagnose me (I have already had a celiac blood panel; tested negatively, falsely I believe, because I had already started a gluten-free diet not knowing any better and not having any kind of guidance from a doctor).

2) The closest GI is over 350 miles away and the insurance company won't pay for any travel until I am "officially" diagnosed because they believe it could be any number of other conditions.

I am desperate to get this diagnosed because I have 2 very young children, one of whom I suspect also has it. On my bad days I have a hard time caring for them and my husband has had to take off a lot of work to help and I have been hospitalized a couple of times for malabsorption.

Any suggestions would greatly be appreciated and thanks already for all of the great support!

Hi and welcome to the forum!!! You have come to the right place for support and advice. There are a bunch of really great, knowledgeable people here who are always willing to help out.

It sounds like you are quite isolated. I know exactly what you are talking about when you say it's hard to look after your children when you are suffering the effects of gluten contamination. I have four children, 12 yr old, 7 yr old and 4 yr twin boys. There were some days when all I could do was lay on the couch and watch the boys that way and make sure they knew not to leave the room. This disease could really throw you for a loop!!

I can't really advise you on doctors in Alaska or about insurance company demands as I am from just outside Toronto, and the Canadian medical system is different. But I am sure that there are people on this board who will be chiming in and giving advice real soon!!

Hugs and welcome!
Karen

Thank you Karen for such a cheery welcome! Can't imagine trying to keep up with four kids, especially twin boys, but as exhausting as it is, I am sure they are truly a blessing!

Thanks again for the encouragement!

hello and welcome to the group

I wish you had e-mailed before as my husband & I just spent two months in the great white north!!!! we drove from Pa lower 48 which took us ten days to hit the state of alaska. I would have loved to meet you.
where do you live up there? we toured the whole state and its calling us back if we can ever afford to do it again.
I really can't help you with a doctor but I think in either anchorage or fairbanks there are several good naturpaths. I met a lady from Homer that uses a great naturpath maybe in soldotna.... But if you feel better not eating wheat and gluten DON"T ----- it is the only way to take care of the symptons anyway.I too started on a gluten free diet before testing and it was a false positive so I didn't get anywhere with doctors. I just maintain a gluten free lifestyle self taught... I do know the Fred Meyer stores sells some gluten free stuff , there is a small health food store in Homer that sells gluten-free and I think around anchorage there is another health store. none carried tons of stuff but it carried me over while I was up there. In vancouver there are many great places to buy from if you would want names and addys let me know......I end up mail ordering most of my food stuffs because where I live there is nothing close to me ....
I use the betty hagman four bean flour for almost all my cookies and they work just fine.....
If I can be of any help to you please let me know.

lhasapets@zoominternet.net

blessings

mamaw

I live in North Pole, just outside of Fairbanks. The closest GI is in Anchorage. I will probably be able to visit a doc there this summer. We usually travel the state during warmer temps.

I have a sister in the DC area who may be getting married this summer and so I may be on the east coast, too.

I use a naturpath who lives in Sterling, which is just outside of Soldotna. I wonder if it is the same one. Her name is Annette Meyer. I used her for a couple of years and just got to meet her this past summer as my other sister just moved down there. She has some good digestive enzymes that seem to speed up the process of ridding my body of gluten should I consume any. My mom is convinced that I can "back out" this condition and I am trying to educate her about how dangerous that might be to me because even if I begin not having symptoms I could still be doing damage.

Re: Fred Meyer's, I have found they have a nice gluten-free section and love the gluten-free pantry sandwich bread. I am hoping that eventually I can start making more food from "scratch" rather than mixes as it is quite expensive. In the meantime I am going to place an order on-line with the gluten-free pantry.

Thanks for your help!

hello
i spent a week at Fairbanks and the North Pole. If you are in need of finding some really great tasting gluten free I can give you a heads up as I have been researching and trying by trial and error. I know this is so costly and if I have to eat it then I want the best tasting......breads by anna are just terrific if you like the earthy type breads, my grandkids love it. I also have a recipe for pop tarts if your kids miss those. I also use the four bean flour alot from betty hagman. I make my regular recipes with this flour. do you have a bread machine??/
If you happen to get down this way please look me up, you can contact me through my personal e-mail

lhasapets@zoominternet.net

mamaw
aka

sande

Greetings Fellow Alaskan!

Sorry to hear about your health problems but it sounds like your on the right track with eliminating gluten and feeling better. Aside from a diagnosis, thats the important thing for you right now until you can get into "civilization" for a colonoscopy. Your somewhat isolated location makes it much more difficult so buying online products must be a blessing for you.

I live just outside of Anchorage and use a GI (Dr. Shannon) that works out of Alaska Regional Hospital. I like him and he's pretty well respected. I'm not Celiec, but have a condition called Microscopic Colitis which can only be DX by a colonoscopy. For the most part, I've been managing my symptoms by diet alone for about a year. It's challenging but becomes second nature after awhile.

Glad your researching and taking matters into your own hands. I was very sick for a couple years before my DX and wish I had paid closer attention to my body and diet sooner.

Stay Warm!