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Wisconsin Celiacs Unite!

frenchiemama

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jcc Rookie
jcc
Posted

Hello fellow Kenoshans and Wisconsinites!

I was born in Milwaukee, grew up in Greendale, attended UWM, and have resided in Kenosha for the last 20+ years.

I've been gluten free for eight years, along with my 13 year old daughter. I've been busy advocating about gluten sensitivity ever since we realized my daughter has gluten sensitivity. She doesn't have celiac disease, but had GI, skin, and neurological symptoms related to gluten. Try googling The Gluten File and it tells her story..can't post the link here.

I don't post here very often anymore, but I browse occasionally... and felt compelled to post on this Wisconsin thread! Anyway, I would be happy to help any of you who are new to this, especially those living in Kenosha.... so don't hesitate to contact me via email Open Original Shared Link I've learned a lot over eight years ;).

For those in Kenosha looking for a support group... the Milwaukee Sprue Crew meets at the north side library every couple of months~ you can contact Bev Lieven. I attended a few meetings in the beginning, but just find online support groups easier! A local group can certainly help with best doctors, best places to shop, and have a more personal touch.

Here is a listing of WI CSA support groups... including Milwaukee's group.

Open Original Shared Link

And websites of two other WI groups:

East Central Wisconsin Gluten Free Group - Open Original Shared Link

Wausau Celiac Support - Open Original Shared Link

I also received this not long ago... looks like a group may be starting up in Racine as well.

Racine Celiacs
  • 2 months later...
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RaeinWI Newbie
RaeinWI
Posted
:( I am from Wisconsin and I was wondering if anyone knows where I can buy my Gluten free food. I am having a hard time finding places... Thanks

Winniepooh, I grew up in Antigo and now live in Wausau! Pm if you would like to chat! I am newer to this diet and would love to get more tips/suggestions.

summerteeth Enthusiast
summerteeth
Posted

I'm actually from northern Illinois (just south of Beloit, WI), but my parents have a place in Hazelhurst & we go to Hayward a lot (Grandma Ferdon's is awesome). Let me just say you Wisconsinites have much better gluten-free shopping than we do here (unless I trek to Chicago).

-- Monica

  • 1 year later...
Jez19 Newbie
Jez19
Posted

Hi a new town at add in! I'm from Cadott, well originally for New York but it's a long story. I live in Cadott and work in Eau Claire. I just learned that I have a gluten intolerance and my best course of action may be a gluten free diet and stick along the lines those with celiacs have. I have a best friend with celiacs so luckily I know what I'm looking for. The problem is...does anyone know where I can get a lot of gluten free food? Also anyone know of any restaurants I can eat at?

  • 2 weeks later...
pondy Contributor
pondy
Posted

What city are you from? Any good Wisconsin gluten-free resources?

West Bend (formerly Milwaukee) here!

I can't believe my little town has 2 cafes with gluten free menu items :D

One is called Grasshopper (excellent pancakes) & the other is Cafe Sourette (sp?) - haven't been there yet, but the chef reports to have mostly gluten free dishes. There was a write up about her place in the Milw. Journal/Sentinel some time back.

Mostly I just shop at Woodman's for the basics. Hopefully my garden will do me well in the coming months!

Best,

Pondy

  • 1 year later...
akirabee Newbie
akirabee
Posted

I live in the Watertown, WI area 6 mos., SW Florida 6 mos. Found a good source of fg food in Watertown, but now find I cannot tolerate anything with yeast. All my good bread recipes contain yeast. Any suggestions? Carol

Carol,

I am from Ashippun (north of Oconomowoc), but I went to high school in Watertown.

Best suggestion: Stay away from Pick N Save. They don't have a great selection and people don't have a clue if you ask about it. I haven't checked out the Piggly Wiggly there, but I work at the one In Oconomowoc,and there is part of an aisle dedicated to Gluten free, as well as some other stuff scattered around the store.

There is also a store called Back to the Best ( Open Original Shared Link) that is an organic store run on a family's farm just north of Neosho (east on N off of 67). They carry a brand called Sami's Bakery that is by far better than any store bought bread and are usually made from millet and flax seed.. It isn't guaranteed Gluten free just because of a chance of contact during production, but ingredients-wise it is Gluten and dairy free. The bread comes in all different flavors and also different forms (rolls, tortillas, bagels, etc). If you make it there, definitley get the cinnamon raisin bagels. They're phenomenal and almost addicting.

This also goes for anyone wanting tortillas. This brand has them, and they a a bit more crumbly than normal flour tortillas, but taste better. Rolls too!

I don't have a recipe for bread itself, but for us further out this store is a better option than the loaves from the grocery store. (Better tasting too!)

-Erika

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    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Son's legs shaking

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      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
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      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
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      Anti-endomysial Antibody (EMA) Testing

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      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
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