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GlutenFreeMN

New Here, And Have A Weird Question. (long Post, Sorry!)

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This week has been crazy for my family. I've long suspected that I may have a problem with wheat. I was making some quinoa tabouleh (it's been a favorite of mine even before I suspected a problem!), when I realized that I hadn't talked to my grandmother about the possibility of a wheat allergy. I'll spare you the details, but I recently found out that I wasn't alone in certain digestive problems.

Anyway, called her up and was floored that not only did she know about the possibility of gluten problems, but she'd just been diagnosed as celiac! A few calls later, found out my mother has a gluten allergy also. Should mention that the three of us have hashimoto (autoimmune) hypothyroid disease.

I freaked out at first, then started reading. Not only would celiac explain pretty much every little health quirk I have, but I was shocked to see that my 9 year old son's problems (some of which we didn't attribute to health/food at all!) could also be explained, right back to when he had "failure to thrive" as an infant. He's really, really scrawny, but eats more than most adults.. among other things.

Anyway.. booked an appointment with my Dr, but I'm 98% sure he'll tell me to cut out gluten entirely - he's already told me he figures I have leaky gut (?? didn't look into it), and that I should be on the paleo diet. On that note, the 3 weeks I was able to stick to the paleo diet were the healthiest I've ever felt! A somewhat close second was when I was on my own modifed Atkins a couple years back. I digress.. we'll be seeing the dr in a month (soonest appointment he had), but are working under the assumption that this is the problem, and we'll see how it goes.

Today was day 1. I think we're really lucky, and that "the change" will come relatively easy for us - I LOVE to cook, and I've experimented in the kitchen for as long as I can remember. I don't think we'll have a problem there - eating out will become inconvenient though. I love me my Buffalo Wild Wings!!

Anyway, we were totally clean today, and the food was great (Red Mills "Mighty Tasty" cereal with cinnamon, agave nectar, chopped apple, raisins, and pecans for breakfast, Chipotle burrito bol for lunch, and this awesome.. I don't know what to call it. Sort of a chicken and mixed veggie florentine-ish baked casserole for supper). Here's the problem.

Flour is kinda how I make my living - I'm a cake lady. Big weddings cakes, mostly. I'm sure my pores leak icing sugar, lord knows I've inhaled enough when mixing frosting!

Is baking gluten full stuff for OTHER people ok if I don't eat it? I know many other allergies are such that you can't touch/breathe the allergen without problems. I do inhale icing sugar a lot (I know a mask can fix that, even if that would be annoying).. but I work with flour and stuff all day. I don't have a sweet clue about baking gluten free yet, and even when I do, I don't think it's financially reasonable for me to take my business gluten free.

Another consideration.. I don't eat cake, because I'm totally sick of it anyway (pre-gluten realization, also!). Being around it all day kinda kills the sweet tooth, you know? However, I DO experiment, and when I come up with a new flavor, I DO try it to make sure the flavors are balanced. I can't see any way around it. If I taste and spit out.. would that trigger the allergy? I hope that's not a really stupid question. It's the only work around I can think of, short of trusting someone else (not cool).

I freaked when I found out that this may be the cause of the problems, then with a couple days and a field trip to Whole Foods, I really calmed down and realized that it doesn't mean a bland or nasty diet... I AM worried about the financial issue though (cost of gluten-free foods aside!!). Help!

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Where to start.......

Red Mills "Mighty Tasty" cereal

This is one of my fav's have it at least 1 time per week

we'll be seeing the dr in a month

If you go "off gluten" prior to a possible blood test he/she may or may not run... you may get a false negative as you wouldnt have gluten in your system

Flour is kinda how I make my living - I'm a cake lady. Big weddings cakes, mostly. I'm sure my pores leak icing sugar, lord knows I've inhaled enough when mixing frosting!

You dont absorb gluten thru your skin (some do have a wheat allergy that wheat bothers the skin) its the getting into your mouth that poses the biggest issues if you are celiac. Being a cake maker this poses problems...... flour will get all over... you touch anything then go eat and bang you just got glutened

If you bake those cakes in your home kitchen you will not have a "safe haven" from cross contamination

However, I DO experiment, and when I come up with a new flavor, I DO try it to make sure the flavors are balanced.

Well, would suggest no more inventing then cause even if you spit it out directly after, it still leaves traces and for some a piece as small as 1/1000 of a crumb will cause major symptoms

Not sure if this goes for everyone... but the longer I am "off gluten" the more sensitive to it I become. My husband drank a beer with his friends came back in the house gave me a kiss and I was sicker than heck for a week, not only did I feel like heck but so did he, he doesn't drink beer anymore and if he has eaten something with gluten in it he will not give me a kiss until after brushing his teeth..... twice

Well, sure there is something I forgot but someone else will mention it I am sure!

By the welcome! ( I forgot that at the begining, lol)


Just my .00000002 cents worth

If I knew what I was doing years ago I would have half a clue today!

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Hi, about baking, I gave up baking things with ordinary flour for hubby, because I noticed it kept giving me this DH rash behind my ears ans other places. Hurts and burns. I never reaslized the connection until after I went gluten-free and it got better until I noticed it got worse when baking.

Now I had some gluten crumbs in the vacuum cleaner, and the rash came back. The vacuum spwes out some particles in spite of all the fancy filters.....I just changed the bag. I should rinse the indide of the vacuum cleaner hose too I think before I use it with the new paper bag...

It is not recommended for celiacs to work in environments with dust with gluten.

By the way, cakes, and anything that does not need yeast to rise, is easier to bake with gluten-free flour mixes. You need to find some mixes that are good, there are differences. Or mix yourself.

It is recommended you eat at least 0,3 grams of gluten per kg for at least 6 weeks, better at least 3 month before the tests so they will not show up negative. But it can take a lot longer.

nora


gluten-free since may 06 after neg. biopsy symptoms went away and DH symptoms which I had since 03 got gradually better.

daughter officially diagnosed celiac and casein intolerant.

non-DQ2 or DQ8. Maybe DQ1? Updated: Yes, double DQ5

Hypothyroid since 2000, thyroxine first started to work well 06 on a low-carb and gluten-free diet

Lost 20 kg after going gluten-free and weighing 53 kg now. neg. biopsy for DH. Found out afterwards from this forum that it should have been taken during an outbreak but it was taken two weeks after. vitaminD was 57 nmol/l in may08)

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I would just call your dr's office and have them order the blood tests right away. That's what I did. They should be able to do that for you, especially if they understand what celiac is and that you are at risk because of family history. Just don't take no for an answer.

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Hi GlutenFreeMN

I agree with the answers already posted to this question. I'm new to this forum and was only diagnosed in the spring. I am hyper sensitive to anything containing gluten. I don't even allow my husband to bring his leftovers home if they're not gluten free (I have a really supportive mate). I am also a research geek (wanted to be a librarian for my second career but went into teaching). Anyway, I agree that you should have the tests right away and not be following the gluten free diet until the tests. If you're really not feeling well and the diet is helping then follow it. It depends on how sick the gluten is making you. Everything I've read says that if you eliminate gluten before you are tested you will test negative. As I mentioned this is a new world to me and I can't imagine myself anywhere near any form of flour with gluten in it. I hope that this helps and that you feel better. Right now I'm in the middle of a flare and I think it's canola oil (which some people list as gluten free).

Loey

P.S This forum is a Godsend. smile.gif I just relocated to a new state, do not know anyone (I'm homesick), and am too sick to look for work. I have already gained a lot of insight from all of the wise people posting here (all of the threads) and it has definitely made me feel less alone. Thanks to everyone!

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There are also ways to manage prices so you aren't paying $7.00/lb for pasta (on sale!). Mail order bulk, use alternate foods (boy do I eat rice), make your own mixes/foods, or sub in different foods. Want a cookie? Eat an apple. Or some dried fruit. Or flan. REALLY want a cookie? Time to bake.

In some ways, pushing down on your grocery bill also makes you eat healthier foods because you'll hopefully tend to sub in fruits, vegetables, whole grains like rice or quinoa and lean protein instead of buying a frozen pizza or a gluten-free baguette made from refined starches.

Unless you want to become a gluten-free baker, it's probably time for a career change. There are a dearth of gluten-free bakers though...


2/2010 Malabsorption becomes dramatically noticable

3/2010 Negative IgA EMA; negative IgA TTG

4/2010 Negative biopsy

5/2010 Elimination diet; symptoms begin to resolve on gluten-free diet round two (10 days)

5/2010 Diagnosed gluten sensitive based on weakly positive repeat IgA & IgG TTGs and dietary response; decline capsule endoscopy.

Now, what to do about my cookbook in progress? Make it gluten-free?

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Yeah, baking is going to be very difficult to do safely. Perhaps if you wore a mask, like a dental hygienist type, it might be enough to keep the wheat from your mouth and nose, but it might not be enough, even then.

In Europe, last I heard, it's actually not legal for a diagnosed Celiac to work in a bakery or other places where flour is everywhere. Considered too much of a health risk, so if that tells you anything...it's going to be very hard. :-(

Partially because it's not just the flour. The sugar, the extracts - if it ain't gluten-free, then it's a potential health hazard for you due to cross contamination with gluten. And even if it SAYS it's gluten-free, you'll have to determine if it's gluten-free enough or if it still has too much gluten for you.

However...gluten free bakery? You might be surprised how well those can do. People are REALLY looking for gluten free goodies. If you're curious what they offer, there's one near me that's nice that might be something to check out - they send out their orders express mail anywhere that can get 1-2 day mail, so I think that's how they help make sure they get a big enough customer base.

( http://www.glutenfreecreations.com/ )

>>> However, I DO experiment, and when I come up with a new flavor, I DO try it to make sure the flavors are balanced. I can't see any way around it. If I taste and spit out.. would that trigger the allergy?

Yup, that will knock you flat, I'm afraid. If you are celiac, tasting gluten, at all, will hurt you. Wearing lipstick with gluten is enough to get you, even. :( They are a couple studies where they swabbed mucus membranes of celiacs with gluten, and even that is enough to start triggering an auto-immune reaction, although last I heard, they don't know exactly what that triggering DOES. But yeah...if you want to get well, you can't taste any more things based on flour again.


T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive

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