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
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,702
    • Most Online (within 30 mins)
      7,748
    Coach Chris
    Newest Member
    Coach Chris
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Gigi2025
      How Come Gluten Didnt Bother Me In Italy

      By Gigi2025 · Posted

      Hi Christiana, Many thanks for your response.  Interestingly, I too cannot eat wheat in France without feeling effects (much less than in the US, but won't indulge nonetheless).  I also understand children are screened for celiac in Italy prior to starting their education. Wise idea as it seems my grandson has the beginning symptoms (several celiacs in his dad's family), but parents continue to think he's just being difficult.  Argh.  There's a test I took that diagnosed gluten sensitivity in 2014 via Entero Labs, and am planning on having done again.  Truth be told, I'm hoping it's the bromine/additives/preservatives as I miss breads and pastas terribly when home here in the states!  Be well and here's to our guts healing ❤️
    • Wends
      Inconclusive results

      By Wends · Posted

      Lol that’s so true! Hope you get clarity, it’s tough when there’s doubt. There’s so much known about celiac disease with all the scientific research that’s been done so far yet practically and clinically there’s also so much unknown, still. Out of curiosity what’s her dairy consumption like? Even compared to early years to now? Has that changed? Calcium is dependent in the mechanism of antigen presenting cells in the gut. High calcium foods with gluten grains can initiate inflammation greater.  This is why breakfast cereals and milk combo long term can be a ticking time bomb for genetically susceptible celiacs (not a scientific statement by any means but my current personal opinion based on reasoning at present). Milk and wheat are the top culprits for food sensitivity. Especially in childhood. There are also patient cases of antibodies normalising in celiac children who had milk protein intolerance/ delayed type allergy. Some asymptomatic. There were a couple of cases of suspected celiacs that turned out to have milk protein intolerance that normalised antibodies on a gluten containing diet. Then there were others that only normalised antibodies once gluten and milk was eliminated. Milk kept the antibodies positive. Celiac disease is complicated to say the least.
    • deanna1ynne
      Inconclusive results

      By deanna1ynne · Posted

      And thank you for your encouragement. I am glad that her body is doing a good job fighting it. I also just want clarity for her moving forwards. She was only 6 for the last round of testing and she's 10 now, so I'm also hoping that makes a difference. It was weird during her last round of testing though, because right before her biopsy, we'd upped her gluten intake by giving her biscuits made from straight up vital wheat gluten, and her labs actually normalized slightly (lower ttg and her ema went negative). Bodies just do weird things sometimes! lol
    • deanna1ynne
      Inconclusive results

      By deanna1ynne · Posted

      The first negative biopsy in 2021 just said "no pathological change" for all the samples, and the second one in 2022 said "Duodenal mucosa with mild reactive change (focal foveolar metaplasia) and preserved villous architecture." So I think Marsh score 0 in both cases, though it's not actually written in the pathology reports. I'm really hoping to get a clear positive result this time, just for her sake.  
    • Wends
      Blood results

      By Wends · Posted

      Hopefully the biopsy gives a conclusive and correct diagnosis for your daughter. Im in the UK and have been in the situation a few years ago of trying to rule celiac in or out after inconclusive results. Many symptoms pointing to it including the classic symptoms and weight loss and folate and iron deficiency. You have to play a waiting game. I also had the label of IBS and likely food allergy. Genetic test showed low risk for celiac but not no risk. It sounds like the Gastroenterologist is on it and hopefully will diagnose what it is correctly. Food hypersensitivity (allergy) can also cause similar symptoms and inflammation as well as mimicking IBS. Milk / dairy and wheat (cereal grains) being the biggest culprits. The “oesophagitis” and “gastritis” you mentioned can be caused by another gastrointestinal disorder called “eosinophilic gastrointestinal disorders”. These are named depending on which part of the gastrointestinal tract is affected. For example eosinophilic oesophagitis, eosinophilic gastritis, eosinophilic gastroenteritis, and more rare eosinophilic colitis. They are antigen (allergen) driven. When the blood test measuring anti-ttg antibodies is positive in absence of a positive ema test - which is more specific to celiac, this can also suggest food hypersensitivity (allergy). Usually delayed type allergy similar to celiac but not autoimmune if that makes sense. In this case the ttg antibodies are transient. Which happens. I’ve first hand experience. For info, evidence of villous atrophy too can be caused by food hypersensitivity. Not just by celiac disease. In Egid disorders the six food elimination diet, under a dietitian and gastroenterologist care, is the dietary protocol to figure out the culprit or culprits. Sometimes only two food elimination diet is used at first. The number one culprit is milk protein / dairy. Followed by wheat, eggs, soy, fish and seafood, and nuts. Most are only reactive to one food group or two. Most are only reactive to milk. Hope this is a helpful reply.
×
×
  • 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.