Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Newbie

jonizaak

By jonizaak
in Coping with Celiac Disease

Recommended Posts

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

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      128,343
    • Most Online (within 30 mins)
      7,748
    AliciaO
    Newest Member
    AliciaO
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.8k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • James47
      I’m terrified it’s too late for me😭

      By James47 · Posted

      Hiya..I was 48 when diagnosed two years ago and I was in right bad way but strict gluten-free diet you will recover I promise x
    • James47
      Long term recovery

      By James47 · Posted

      Hi everyone I'm James, I hope you are all feeling well??. Accidentally had gluten at weekend and I've had severe diarrhea since sat night. My question is ,the longer someone like myself has been following a strict gluten-free diet will the exposure to gluten be lot more extreme as body now has been free of it well over a year ? Any information be much appreciated and any tips on how to stop the constant diarrhoea I have currently also be appreciated guys x
    • Cathijean90
      I’m terrified it’s too late for me😭

      By Cathijean90 · Posted

      Thank you so much Scott 🫶🏻
    • Wheatwacked
      SkinSafe

      By Wheatwacked · Posted

      I use Listerine.  Rinse first to soften the tarter, then brush with Oral B electric toothbrush super sonic.  The $15 ones at the supermarket.  At 73 I still have all my teeth.  While a blood test can measure iodine levels, it's not the most accurate method for assessing iodine status, and urinary iodine excretion is considered a better indicator.  Have any of your dermatologists ever done a biopsy for dermatitis herpetiformis?  I may have missed it.  Note the similarity of Casal's necklace to one of your symptoms. Pellagra rash is a characteristic skin manifestation of niacin (vitamin B3) deficiency. It typically presents as:  Erythema: Red, sunburned-like areas of skin, often on the face, neck, arms, and legs.  Scaliness: Dry, flaky skin that may become thickened and crusty.  Hyperpigmentation: Darkened patches of skin, particularly in sun-exposed areas.  Casal's necklace: A dark, pigmented band around the neck.  I am currently taking these} Vitamin D 10,000 IU (250 mcg) DHEA 100 mg 500 mcg Iodine  10 drops of Liquid Iodine B1 Thiamin 250 mg  B2 Riboflavin 100 mg B3 Nicotinic Acid 500 mg 4 times a day for hyperlipidemia. B5 Pantothenice Acid 500 mg Vitamin C 500 mg     Selenium 200 mcg  Several times a week
    • Itsabit
      SkinSafe

      By Itsabit · Posted

      I will. Thanks. I did just have mg B12 drawn. I should also state that I am already taking a Vit D supplement, as I live in the US in New England sand just about everyone who lives here is deficient, esp during our winters with less exposure to natural sunlight. I was also taking a chewable bariatric vitamin as well because of my food issues related to my cancer treatment (which was many years ago, but there are long term effects.) I just stopped it because I was unable to get any gluten information about it. And it did contain iodine. Is there even a vitamin that doesn’t? I don’t know, but I will check. I also take Calcium and Magnesium in the form of “Rolaids” for leg cramps/spasms, with good effects. Thanks. 
×
×
  • Create New...