Jump to content

  • 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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Kimmy88
      - Kimmy88 commented on Scott Adams's article in Winter 2026 Issue
      8

      Can You Really Trust Gluten-Free Menus? What Every Celiac Needs to Know Before Eating Out

      Thanks this is helpful!
    2. xxnonamexx
      - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Fermented foods, Kefir, Kombucha?

      very interesting thanks for the info
    3. Florence Lillian
      - Florence Lillian replied to lmemsm's topic in Gluten-Free Recipes & Cooking Tips
      13

      gluten free cookie recipes

      More cookie recipes ...thanks so much for the heads-up Scott. One can never have too many. Cheers, Florence.
    4. Russ H
      - Russ H replied to Charlie1946's topic in Related Issues & Disorders
      15

      Severe severe mouth pain

      Hi Charlie, You sound like you have been having a rough time of it. Coeliac disease can cause a multitude of skin, mouth and throat problems. Mouth ulcers and enamel defects are well known but other oral conditions are also more common in people with coeliac disease: burning tongue, inflamed and swollen tongue, difficulty swallowing, redness and crusting...
    5. cristiana
      - cristiana replied to Charlie1946's topic in Related Issues & Disorders
      15

      Severe severe mouth pain

      Hi @Charlie1946 You are very welcome. I agree wholeheartedly with @knitty kitty: "I wish doctors would check for nutritional deficiencies and gastrointestinal issues before prescribing antidepressants." I had a type of tingling/sometimes pain in my cheek about 2 years after my diagnosis. I noticed it after standing in cold wind, affecting...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,916
    • Most Online (within 30 mins)
      7,748
    Ykat
    Newest Member
    Ykat
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • xxnonamexx
      Fermented foods, Kefir, Kombucha?

      By xxnonamexx · Posted

      very interesting thanks for the info  
    • Florence Lillian
      gluten free cookie recipes

      By Florence Lillian · Posted

      More cookie recipes ...thanks so much for the heads-up Scott.  One can never have too many.  Cheers, Florence.
    • Russ H
      Severe severe mouth pain

      By Russ H · Posted

      Hi Charlie, You sound like you have been having a rough time of it. Coeliac disease can cause a multitude of skin, mouth and throat problems. Mouth ulcers and enamel defects are well known but other oral conditions are also more common in people with coeliac disease: burning tongue, inflamed and swollen tongue, difficulty swallowing, redness and crusting in the mouth corners, and dry mouth to name but some. The link below is for paediatric dentistry but it applies to adults too.  Have you had follow up for you coeliac disease to check that your anti-tTG2 antibodies levels have come down? Are you certain that you not being exposed to significant amounts of gluten? Are you taking a PPI for your Barrett's oesophagus? Signs of changes to the tongue can be caused by nutritional deficiencies, particularly iron, B12 and B9 (folate) deficiency. I would make sure to take a good quality multivitamin every day and make sure to take it with vitamin C containing food - orange juice, broccoli, cabbage etc.  Sebaceous hyperplasia is common in older men and I can't find a link to coeliac disease.   Russ.   Oral Manifestations in Pediatric Patients with Coeliac Disease – A Review Article
    • cristiana
      Severe severe mouth pain

      By cristiana · Posted

      Hi @Charlie1946 You are very welcome.   I agree wholeheartedly with @knitty kitty:  "I wish doctors would check for nutritional deficiencies and gastrointestinal issues before prescribing antidepressants." I had a type of tingling/sometimes pain in my cheek about 2 years after my diagnosis.  I noticed it after standing in cold wind, affecting  me after the event - for example, the evening after standing outside, I would feel either tingling or stabbing pain in my cheek.   I found using a neck roll seemed to help, reducing caffeine, making sure I was well-hydrated, taking B12 and C vitamins and magnesium.  Then when the lockdowns came and I was using a facemask I realised that this pain was almost entirely eliminated by keeping the wind off my face.  I think looking back I was suffering from a type of nerve pain/damage.  At the time read that coeliacs can suffer from nerve damage caused by nutritional deficiencies and inflammation, and there was hope that as bodywide healing took place, following the adoption of a strict gluten free diet and addressing nutritional deficiencies, recovery was possible.   During this time, I used to spend a lot of time outdoors with my then young children, who would be playing in the park, and I'd be sheltering my face with an upturned coat collar, trying to stay our of the cold wind!  It was during this time a number of people with a condition called Trigeminal Neuralgia came up to me and introduced themselves, which looking back was nothing short of miraculous as I live in a pretty sparsely populated rural community and it is quite a rare condition.   I met a number of non-coeliacs who had suffered with this issue  and all bar one found relief in taking medication like amitriptyline which are type of tricyclic anti-depressant.   They were not depressed, here their doctors had prescribed the drugs as pain killers to address nerve pain, hence I mention here.  Nerve pain caused by shingles is often treated with this type of medication in the UK too, so it is definitely worth bearing in mind if standard pain killers like aspirin aren't working. PS  How to make a neck roll with a towel: https://www.painreliefwellness.com.au/2017/10/18/cervical-neck-roll/#:~:text=1.,Very simple. 
    • Scott Adams
      gluten free cookie recipes

      By Scott Adams · Posted

      We just added a ton of new recipes here: https://www.celiac.com/celiac-disease/gluten-free-recipes/gluten-free-dessert-recipes-pastries-cakes-cookies-etc/gluten-free-cookie-recipes/
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.