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Newbie

jonizaak

By jonizaak
in Coping with Celiac Disease

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jonizaak Newbie
jonizaak
Posted

I was just diagnosed with Celiac on Monday. I'm having a tough time dealing with the news, but am happy I'm going to finally stop feeling awful all the time. I stopped eating gluten on Tuesday, and what is odd is I actually feel worse.

Is this common? How long does it take to start feeling better? Am I going to get over my craving for English muffins?

I was looking through my kitchen cabinet last night (I can't purge it of gluten because I have a roommate) and was amazed how many things have some form of wheat or other gluten. The corn flakes had wheat starch and the corn chex had barley malt extract. I had to eat a can of peaches because there was nothing else.

I feel hopeless and feel like I'm going to go nuts. I'm glad I found this website.

/rant

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ravenwoodglass Mentor
ravenwoodglass
Posted

(((((((((((((((HUGS)))))))))))))))

It will get better. It is not unusual to feel worse for a bit when first diagnosed. Many of us go through a withdrawl and that can make us cranky and depressed but it will lift.

Do try to go with as much naturally gluten free whole foods as you can. It will help you heal the quickest with less cross contamination. Do get a new toaster for gluten free bread, do not use the same one as used for gluten. A new strainer for pasta is also needed and replace any wooden utensils. Do check your shampoos and other toiletries and be sure to check any meds you take, OTC and Script as well as supplements.

It can take some getting used to at first but you'll get through it. Ask any questions you need to and I hope your feeling better soon.

Lisa Mentor
Lisa
Posted

I was just diagnosed with Celiac on Monday. I'm having a tough time dealing with the news, but am happy I'm going to finally stop feeling awful all the time. I stopped eating gluten on Tuesday, and what is odd is I actually feel worse.

Is this common? How long does it take to start feeling better? Am I going to get over my craving for English muffins?

I was looking through my kitchen cabinet last night (I can't purge it of gluten because I have a roommate) and was amazed how many things have some form of wheat or other gluten. The corn flakes had wheat starch and the corn chex had barley malt extract. I had to eat a can of peaches because there was nothing else.

I feel hopeless and feel like I'm going to go nuts. I'm glad I found this website.

/rant

Welcome!

You must not be in the US. Five of the Chex Cereals are now gluten free, in the US.

Good health has a price, but you are on the right road. You have to be a quick learn and I am sure that you will find your way soon. We have all been in your shoes.

jonizaak Newbie
jonizaak
Posted
  • Author

Thanks both of you for your kind words. I am very happy that I am going to get better. I have spent enough time in the bathroom for 2 or 3 lifetimes and I am so excited abpout not having to plan my life around where the closest public restroom is.

I am in the US, but the box of Chex we have is a generic brand (something like Toasty corn squares) but I call them Chex because they are similar. I guess I will have to buy the real stuff, even though I am a cheapskate, ha!

I'm curious, though, to know how long it takes to start seeing changes in my digestive system? My doctor wants me to come in after 6 weeks on a gluten-free diet to make sure that I am feeling better. Is this the usual time for feeling better?

Also thanks for the heads up on medicine. Something I never thought of. Do the packages list gluten as an ingredient.

Also, do you know if maltodextrin is bad? I know malt is from barley and barley has gluten.

Thanks again guys!

Emilushka Contributor
Emilushka
Posted

Also, do you know if maltodextrin is bad? I know malt is from barley and barley has gluten.

My personal understanding is that it's bad. I don't do maltodextrin. But I'm a newbie too - I'm sure the more experienced members of the forum will have better educated answers than mine.

Hang in there. I'm in the same stage as you are. I'm frustrated as hell, sometimes feeling better and sometimes feeling just as awful. I sit on the bathroom floor some nights and curse my existence.

We can do this together! We can be Celiac newbies together. As awful as all of this stupid crap is, at least we are together in the craziness.

kitgordon Explorer
kitgordon
Posted

In the US maltodextrin is usually made from corn, and if not it should say clearly "Contains wheat". I haven't had any trouble with maltodextrin.

diane64 Apprentice
diane64
Posted

It's been almost 3 months of gluten free living for me. I felt better after a month or so. I feel really great now- much more positive and confident. It is a pain to give up gluten at times- especially at parties, restaurants, etc. I am very careful and when it doubt, I don't eat it! I agree with a post above- eat the naturally gluten free foods. You won't miss gluten that way.

Some gluten free foods are okay, most not as good as the "real" breads, cookies, etc.

Good luck and hang in there!!

Diane

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Lisa Mentor
Lisa
Posted
I don't do maltodextrin. But I'm a newbie too - I'm sure the more experienced members of the forum will have better educated answers than mine.

Maltodextrine is gluten free, but, don't confuse it with Malt.

Hang in there. I'm in the same stage as you are. I'm frustrated as hell, sometimes feeling better and sometimes feeling just as awful. I sit on the bathroom floor some nights and curse my existence.

We can do this together! We can be Celiac newbies together. As awful as all of this stupid crap is, at least we are together in the craziness.

Only to add to your confusion....Malt is not a good thing, but few products contain active malt. Maltodextrine is so processed that it it considered safe for people with Celiac to consume.

So the short....malt is bad, maltodextrin is ok. Confusing, ah, yeah!!!

psawyer Proficient
psawyer
Posted

My personal understanding is that it's bad. I don't do maltodextrin. But I'm a newbie too - I'm sure the more experienced members of the forum will have better educated answers than mine.

USA Code of Federal Regulations

Sec. 184.1444 Maltodextrin

CAS Reg. No. 9050-36-6. It is a nonsweet nutritive saccharide polymer that consists of D-glucose units linked primarily by [alpha]-1-4 bonds and has a dextrose equivalent (DE) of less than 20. It is prepared as a white powder or concentrated solution by partial hydrolysis of cornstarch, potato starch or rice starch with safe and suitable acids and enzymes.

Open Original Shared Link

Note: FDA also permits the use of other starches including wheat. For example, if wheat is used it must be labeled "wheat maltodextrin".

Emilushka Contributor
Emilushka
Posted

Thanks for clarifying, guys! I will start eating maltodextrin immediately. Or maybe after my next shopping trip. :-)

ravenwoodglass Mentor
ravenwoodglass
Posted

Also thanks for the heads up on medicine. Something I never thought of. Do the packages list gluten as an ingredient.

Meds and supplements do not have the same regs as food. You may not see wheat, rye or barley listed or with supplements you could see gluten free on the label but it may still contain wheat or barley grass. Do read all ingredients for supplements. With script and OTC meds it is best to call the maker, some pharmacies will check for you but some won't. Generics should be checked at each refill but name brand scripts only need to be checked once as while the drug is under patent none of the ingredients including the fillers can be changed.

mamaw Community Regular
mamaw
Posted

You received some good info so I'll just tell you where you can get excellent english muffins plus more.... Joan's gluten-free Greatbakes.....her bagels & pizzas are very good as well.

Conte's has ravioli & pierogi's that are very good.

Dutch Country Pretzels for a good soft pretzel.

EverybodyEats for baguettes & Ficeille rolls

The Grainless Baker: graham crackers, creme puffs, hot dog buns are a few of our favorites.

hth

mamaw

Lisa Mentor
Lisa
Posted

You received some good info so I'll just tell you where you can get excellent english muffins plus more.... Joan's gluten-free Greatbakes.....her bagels & pizzas are very good as well.

Conte's has ravioli & pierogi's that are very good.

Dutch Country Pretzels for a good soft pretzel.

EverybodyEats for baguettes & Ficeille rolls

The Grainless Baker: graham crackers, creme puffs, hot dog buns are a few of our favorites.

hth

mamaw

Mamaw knows her stuff B)

mamaw Community Regular
mamaw
Posted

Thanks Lisa--- I just love to eat but its got to be the best....!!!!!

blessings

mamaw

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