mumseyh

Please look into Intersticial cystitis. A lot of us on here have it. I had the same issues, but no UTI as well. IC is an autoimmune disease that cause damage to the lining of the bladder and can also cause ulcers in the bladder. Check out the IC network for lots of info. The IC diet helps a lot ! There are many foods that can irritate the bladder, so I suggest checking that out as well.

Thanks, that was just the info I was looking for. Is the IC network a forum?

My sister needs a doctor in the Detroit area who accepts HAP insurance. She has not been diagnosed yet, but has many symptoms like mine. She would prefer someone out of St. Mary's or Henry Ford Hospital. Any suggestions? I have not lived there in many years so I am not familiar with anyone. Thanks

Anyone from southeastern WI , namely New Berlin, Franklin, Muskego or Hales Corners having a hard time finding Progresso Creamy Mushroom soup? We haven't found it in any of the Pick N Save or Sentry stores for the last couple weeks. I called Chris, the manager at the Hales Corners Pick N Save and he said he'd try to order for next time and they discontinued carrying it at his store. He was great to talk with and he said I'm not the only one to call so he's going to order. They have to buy about 70 cases and I said I'd take at least 2 if he brings it back.......anyone else shop there? Have any ideas? or recommendations?

Thanks for reading.

Have you tried the new Sendik's grocery store in Franklin? I'm not sure if they have that item, but they have a nice gluten free selection. Also, have you tried Molly's gluten free bakery in Delefield? It is wonderful!

My husband was just diagnosed with Celiac. We live just outside of Milwaukee, near Sussex. Anyone from around here?

Welcome,

I live in Greenfield. I went gluten free last August. If you want to exchange some ideas for shopping or eating out, let me know. Good luck.

Nancy

I live in Milwaukee, and everyone here calls clear lemon lime pop (7 up/sprite) "white soda". I guess it is a regional thing. What can you say about a place that calls a drinking fountain a "bubbler"?

Cocoa Pebbles are my favorite! There are several different companies who make brown rice krispies. The one I have now is Erewhon. So far all of the ones I have tried have been acceptable. The Enjoy Life granola was unedible, in my opinion. I am still looking for a good granola. Health Valley makes a cereal that look like rice chex. It is very good. I have wanted to try the Perky Os that look like Cheerios, but I haven't yet. Would be interested to know if anyone has tried them, and if they are good.

Thanks for the info on some of the others. I would rather spend $3 a box than $5 in the health food store. Also, I always loved cream of wheat, but the old standby cream of rice is pretty close. After you add some brown sugar, it is hard to tell the difference.

Nancy

I have had the taco salad and have had no problems. It was very good.

Thanks, printed it and added it to my binder!

If you like good chinese, LeBistro Shanghai on Hwy 100 in Hales Corners is wonderful. It is small and family owned. I went in with my Triumph dining cards and the waitress took it back to the kitchen. She then returned and pointed out several options on the menu. then she said they could make many more dishes with the fish sauce or the white sauce. I had pad thai noodles with chicken one night and a chicken and vegetable dish another night. They also have a chicken/corn soup which is gluten-free. It is like an egg drop soup base and it is a meal in itself!!! They are such nice people, too.

Today I had a follow up appointment with my G.I. doc. It turned out differently than I expected. The first thing he noticed is that I have lost 35 pounds since the last visit in July (in my case, it is a good thing). When I mentioned the spectrum analysis, he backpedaled on his previous comments about either having celiac, or not having it. He agreed that I have reacted positively to the gluten free diet. I inquired about a capsule endoscopy, and he said he can justify it as long as my blood work shows anemia (which it probably will). He also said my Barrett's esophagus is very minor, and needs to be checked once a year for now. I feel a little better about this guy than I did before. It probably helped that I had my husband come in the room with me. We thought strength in numbers would be helpful today.

I adapted this from an award winning old family recipe, and they turned out great!

Gluten-Free Sugar Cookies

1 cup shortening plus 2T butter

1/2 cup powdered sugar

1/2 cup granulated sugar

(mix the above ingredients until creamy)

Add:

1 egg plus one egg white

1 t vanilla

approx 1/2 t salt

1/2 t cream of tartar

1 t baking soda

2 t xanthum gum

2 cups of flour mix: I used 1 cup of superfine brown rice flour and 1 cup Grandma Ferdon's flour mix

Mix together and chill for an hour. Then roll in balls. Flatten out on baking sheet with the bottom of a glass dipped in sugar. Bake until light brown (12-15 minutes) at 350 degrees. For Christmas, I sprinkled with red and green sugar after flattening.

The original recipe used regular flour and no xanthum gum. It also only used one egg, but mine seemed a little dry, so I added the egg white.

If you have celiac sprue, it is imperative you follow the gluten free diet in order to heal, but it unfortunately is no guarantee healing will occur. Fortunately that(refractory celiac disease) is the exception. Not sure what the latest statistics are. I think another benefit is decreasing your chances of having other autoimmune phenomena occur. I personally believe it is a spectrum of disease, with gluten sensitivity on one end and refractory sprue on the other...following the diet helps us to help ourselves!! Getting well and staying well.

It's really not all that hard. Someone told me to think of it as eating what your great grandmother would have eaten 200 years ago(minus the bread of course!)...no processed foods, all fresh!

Very well stated Ann! My family doctor also mentioned the spectrum analogy. This is what I will present to my GI doc on the 19th. I am already anticipating him being defensive. After the biopsy, he told me I don't have celiac disease, and going gluten-free would be very difficult. Six months later, a positive response from the diet is all the evidence I need (besides a new doctor).

Nancy

GFMemphis (Ann):

You mentioned an artice in an upcoming G. I. Journal. I did a google search on these, and came up with several different publications. Do you have the name of the journal? I realize I am not a doctor, and it may be a stretch to read, but I am a teacher, former paramedic and current nursing student (at age 51). I can usually get a feel for what I am reading. I would love to take some articles to my appointment in 2 weeks. I would love even more to take you with me!! You are a wonderful asset to this board. I hope we aren't picking your brain too much. I believe more than anything else, that a positive response to a gluten-free diet is really all that matters. Getting a formal dx could inhibit getting insurance in the future. Thanks for your help, and I hope you are getting help from being here as well.

Nancy

Molly's bakery is amazing. I make a sandwich every day on their white bread. It is good as any homemade bread out there. I could not go back to buying the commercial ones. The muffins and cupcakes are great, too. They don't even taste like something from a special diet. I give it 5 stars!!!

Thanks gluten-free. I wish there were more doctors like you and my primary doctor. Staying up on the latest articles is very important. I am going to see if there is any way I can track down this article. I agree that it is time to overhaul the methods that are used to read the biopsies. Based on the diet alone, there is no doubt that my situation has improved dramatically. Best of luck to your patients and your practice. I will update in mid December after the follow up.

Nancy

Tee0007:

At Pedros I did explain it to the waiter, and he relayed the info well. I have been there 3 times, and have had no problems. I have also been to Carabbas instead of Olive Garden. The waiter was very familiar with my requests and that was also a great experience. I will call Whole Foods and put in a plug for a west side location. They are building some type of specialty food store on Bluemound at the entrance to Brookfield Square. I am hoping they have gluten free as well. Any info I come across, I will share with you.

Nancy

For GFMemphis: Do you also believe you can be gluten intolerant with a negative biopsy and positive blood work? My GI doc doesn't believe this is possible. My primary doc is the one who discovered this with me, after discovering it with himself. I have most of the same syptoms including anemia. The GI doc did the biopsy and proclaimed that I don't have celiac. He could have me try yet another IBS medication. He told me that if I don't like gluten, don't eat it. He did discover Barrett's Esophagus in the EGD. It is no surprise since every time I ate in the past, I had a constant gurgling in that area. Since being off gluten, that has stopped. So has the indigestion. I would like to reduce the 80 mg of Nexium I take each day. I applaud you for finding the patients with celiac. Hopefully you can help educate the GI docs out there. There is definately a lack of continuing education. I am still trying to find the words to say to the GI doc on the next appointment since the EGD. I have a lot more faith in the primary doctor who is on top of all of the latest information.

The elbow macaroni was excellent, too.

Happy to hear you are doing better, too. I used to have constant pain, and it ended within a few days. It has been 3 months and I would never turn back. Keep up the good work.

Nancy

Hi, I'm new to this board and new to a gluten-free lifestyle. I'm from Allen Park. Happy to see there are other people in Michigan who have this disease. I'm definitely still learning.

Hi,

I'm also from Allen Park, but I have lived in Wisconsin for 20 years. I am also new to gluten-free since last summer. Good luck, and hope you find good places to shop. This is a good place to start. Several people have mentioned places in Ann Arbor. I will want to check them out next time I visit.

Nancy

Thank you for addressing this subject. I take Miralax and wondered if it was gluten free as well. My primary doc diagnosed me, but GI doc insists it is just IBS. I have not seen GI doc in a while, and it was on my list of questions for him.

I use gluten-free pasta called Quinoa, they even sell it at our pick n save. I've eaten the spaghetti and also the lasagna noodles and they made the best dishes yet. Actually the kids like the spaghetti better than the old semolina type noodles.

So far the only thing I really miss is the flour tortillas as I was never a real big bread lover. Being diagnosed as having a Gluten allergy hasn't been all that bad so far and the cramps etc. have stopped almost immediately.

I am also new to the gluten-free life, and I live in Greenfield. There is a Whole Foods next door to St. Mary's Hospital on North Avenue. I haven't been there yet, but the website shows a good selection of gluten free products. My doctor recommended P.F. Changs at Mayfair Mall. They have a gluten free menu. I haven't been there yet, but plan to go. I have had good luck at Pedro's in Brookfield. I order the Fajita's with corn tortillas. Corn tortillas are an aquired taste, but they brown them a little bit and they taste pretty good. Gluten free Trading Company north of the airport has a great selection. The Tinkyada pasta is excellent. My favorite find is Molly's Gluten Free Bakery in Pewaukee. Their bread tastes like regular homemade bread, and you can not tell the difference at all with their cakes. Health Hut also has a good selection of cereals.

My two best discoveries in the Milwaukee area have been Molly's Gluten free bakery in Pewaukee (the bread is as good as any regular bread I have ever had, and the cupcakes tasted exactly like regular ones), and Good Harvest in Waukesha. Gluten free Trading Company is also good. I feel lucky to live near these great places. If you haven't tried them yet, they are worth the drive.

Some of the Milwaukee area Starbucks are carrying a chocolate peanut butter whoopie pie. I asked a manager about it, and she knew nothing about the product. She referred me to their website nutritional information page. All it listed was the standard calories, fat grams, etc. It was over 400 calories, by the way. Even if it were gluten free, it is a pretty fattening snack. I agree that cc in a bakery probably would be a problem, unless someone else was making it for them.

My real name is Nancy, but my daughter calls me mumsey. She loves British literature, and likes they way they refer to mother as "mum". Now that she is away at college, and look forward to her sweet little voice on the phone saying "hi mumsey".