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

New And Unsure


ciavyn

Recommended Posts

ciavyn Contributor

Hello - I am new to this world of gluten-free, and terrified that it is unfortunately my digestive requirement. I have had many years of digestion problems, most of which I chalked up to a sensitive stomach, lactose intolerance, and food poisoning. Almost two years ago, a friend of mine almost died, only to discover what he had was celiac disease which had made a mess of his colon. Ever since then, he's been gluten free, and when I told him some of my issues, he insisted I should try the eating plan. I've put it off, because my symptoms have been manageable. But lately, they haven't been. It's been awful. So, right before the most gluten-holiday of the year, I'm putting myself through the test of whether or not this could be the problem.

(I don't have health insurance, so I have to do this on my own).

My curious questions: how do I know if it is working? Since my symptoms have always been intermittent, though definitely more on than off, I'm not sure if this is just a down period, or if the change in eating is really being effective. However, in the last few days, I definitely feel better than I have in a long while.

Can you cheat occasionally? Or does that just make it worse? Are all things gluten out of the question, or can you have a small amount and be okay? I know people are all different, but I'm wondering about the generalities of it all.

Thank you for this opportunity to enter into the forum and learn. I appreciate it.


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



Celiac.com Sponsor (A8-M):



glutenfreeinminnesota Contributor
Hello - I am new to this world of gluten-free, and terrified that it is unfortunately my digestive requirement. I have had many years of digestion problems, most of which I chalked up to a sensitive stomach, lactose intolerance, and food poisoning. Almost two years ago, a friend of mine almost died, only to discover what he had was celiac disease which had made a mess of his colon. Ever since then, he's been gluten free, and when I told him some of my issues, he insisted I should try the eating plan. I've put it off, because my symptoms have been manageable. But lately, they haven't been. It's been awful. So, right before the most gluten-holiday of the year, I'm putting myself through the test of whether or not this could be the problem.

(I don't have health insurance, so I have to do this on my own).

My curious questions: how do I know if it is working? Since my symptoms have always been intermittent, though definitely more on than off, I'm not sure if this is just a down period, or if the change in eating is really being effective. However, in the last few days, I definitely feel better than I have in a long while.

Can you cheat occasionally? Or does that just make it worse? Are all things gluten out of the question, or can you have a small amount and be okay? I know people are all different, but I'm wondering about the generalities of it all.

Thank you for this opportunity to enter into the forum and learn. I appreciate it.

I just found out I have celiacs disease a few weeks ago. I had problems off and on for 11 years. Was told I had IBS and to eat a high fiber diet....lots of wheat products, ha! They finally did an endoscopy. Started my gluten free diet on Nov. 8th and didn't realize how horrible I really felt! I don't feel GREAT yet, but definatly better. If you have an intolerance to gluten, you cannot eat it at all. Whether you have one tiny bit or an entire gluten-filled pizza, it would set off the same response. I have only known I have this a little while, but have learned SO much from this website. I go to google and search (whatever you are wondering about) then gluten free, and this website is always the first thing that comes up. Good luck!! I have had a lot of luck finding gluten free things for thanksgiving and christmas meals.

frustrated09 Newbie

Don't worry about doing this without your doctor, I've heard they aren't always helpful. Mine told me to try going off dairy and eventually did and then i went off gluten and as of last week i am off soy.

there is no cheating. If you want to feel better then you cannot cheat. everyone is different but i have had to change out shampoo, lotions, toothpaste, deoderant, vitamins.

marsha

self-diagnosed gluten/dairy/soy intolerant

luvthelake21 Rookie

Hi ciavyn and welcome to the forum. My 13 year old daughter just celebrated her 3rd year anniversary this month on being gluten free. My husband who is self diagnosed will celebrate his 3rd year gluten free anniversary in January. With all that being said it can be difficult at first but then it just becomes second nature. Like someone said there is no cheating if you want to get better and not run the risk of serious health problems like cancer later in life. It is normal if you get angry, mad, depresed, but go thru whatever emotions you need to then go on and eat gluten free and live a healthy and happy life. I have been spending the last couple of days printing gluten free receipes for Thanksgiving getting my grocery list ready to go shopping tommorow. With this diet you just have to cook more at home. Make sure to get some new cooking pans and utensils if you can. Check your toothpaste, lotions, makeup and other personal hygiene products and medicines. This forum has been my life saver and three years later I still come here and learn new things. The people are great here so if you have any questions just ask and some one will give you some help. Just hang in there and hope you feel better soon.

Ahorsesoul Enthusiast

If you cut your thigh down to the bone, had stitches, would you pull out the stitches after a few days? No, it would open up, not heal and possibly get infected.

Cheating by eating gluten is just like pulling out the stitches.

angieInCA Apprentice
If you cut your thigh down to the bone, had stitches, would you pull out the stitches after a few days? No, it would open up, not heal and possibly get infected.

Cheating by eating gluten is just like pulling out the stitches.

Wow! I love your analogy! May I have your permission to use this in the future?

ciavyn Contributor

Yes, yes, I've figured the "no cheating" part out now that I've spent the day doing more research. It just stinks! If I'd have known my love affair with Oreos was going to end so abruptly, I would have downed a few more before this debacle! :o

It's just such a change, and hard to accept that you can't be like "everyone else." I'm hoping, though, since my best friend is going organic, that we can share some of the same foods and enjoy making dinner together. My husband and kids, however, are DEFINITELY not interested in this bandwagon.

However, in three days of being strictly gluten free (as strict as I know to be so far), I feel 100% better in my tummy and lower parts. Do you get more sensitive as you stay on this? Do I need to replace all my pots and pans, plates and utensils?! I've stored all "my foods" separately in new containers. (That is one upside - I get to be completely selfish about my food!) But I'm not sure how much else I have to radically change besides my food intake. I don't think I'm as sensitive as some, as for me it is just digestive stuff, not the skin rashes and weeks on end of pain.

I'm curious for any answers, as I feel like I'm fumbling in the dark.


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



Celiac.com Sponsor (A8-M):



Ahorsesoul Enthusiast
Wow! I love your analogy! May I have your permission to use this in the future?

Thanks! Anything I post can be used. I believe the internet postings to be public info so feel free to use it.

Wolicki Enthusiast

there is a decent substitute for oreos. I just bought some for my son. They're called K-Toos, I think. something toos anyway. They're quite good! I think they're made by Paul Newman's company.

Archived

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

  • 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. - catnapt posted a topic in Related Issues & Disorders
      0

      anyone here diagnosed with a PARAthyroid disorder? (NOT the thyroid) the calcium controlling glands

    2. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      how much gluten do I need to eat before blood tests?

    3. - Jmartes71 posted a topic in Coping with Celiac Disease
      0

      Curious question

    4. - Amy Barnett posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      Question

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,322
    • Most Online (within 30 mins)
      7,748

    avery144
    Newest Member
    avery144
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • catnapt
      learned I had a high PTH level in 2022 suspected to be due to low vit D  got my vit D level up a bit but still have high PTH   I am 70 yrs old (today in fact) I am looking for someone who also has hyperparathyroidism that might be caused by malabsorption    
    • catnapt
      I am on day 13 of eating gluten  and have decided to have the celiac panel done tomorrow instead of Wed. (and instead of extending it a few more weeks) because I am SO incredibly sick. I have almost no appetite and am not able to consume the required daily intake of calcium to try to keep up with the loss of calcium from the high parathyroid hormone and/or the renal calcium leak.    I have spent the past 15 years working hard to improve my health. I lost 50lbs, got off handfuls of medications, lowered my cholesterol to enviable levels, and in spite of having end stage osteoarthritis in both knees, with a good diet and keeping active I have NO pain in those joints- til now.  Almost all of my joints hurt now I feel like someone has repeatedly punched me all over my torso- even my ribs hurt- I have nausea, gas, bloating, headache, mood swings, irritability, horrid flatulence (afraid to leave the house or be in any enclosed spaces with other people- the smell would knock them off their feet) I was so sure that I wanted a firm diagnosis but now- I'm asking myself is THIS worth it? esp over the past 2 yrs I have been feeling better and better the more I adjusted my diet to exclude highly refined grains and processed foods. I didn't purposely avoid gluten, but it just happened that not eating gluten has made me feel better.   I don't know what I would have to gain by getting a definitive diagnosis. I think possibly the only advantage to a DX would be that I could insist on gluten-free foods in settings where I am unable to have access to foods of my choice (hospital, rehab, nursing home)  and maybe having a medical reason to see a dietician?   please let me know if it's reasonable to just go back to the way I was eating.  Actually I do plan to buy certified gluten-free oats as that is the only grain I consume (and really like) so there will be some minor tweaks I hope and pray that I heal quickly from any possible damage that may have been done from 13 days of eating gluten.    
    • Jmartes71
      So I've been dealing with chasing the name celiac because of my body actively dealing with health issues related to celiac though not eating. Diagnosed in 1994 before foods eliminated from diet. After 25 years with former pcp I googled celiac specialist and she wasn't because of what ive been through. I wanted my results to be sent to my pcp but nothing was sent.I have email copies.I did one zoom call with np with team member from celiac specialist in Nov 2025 and she asked me why I wanted to know why I wanted the celiac diagnosis so bad, I sad I don't, its my life and I need revalidaion because its affecting me.KB stated well it shows you are.I asked then why am I going through all this.I was labeled unruly. Its been a celiac circus and medical has caused anxiety and depression no fault to my own other than being born with bad genetics. How is it legal for medical professionals to gaslight patients that are with an ailment coming for help to be downplayed? KB put in my records that she personally spent 120min with me and I think the zoom call was discussing celiac 80 min ONE ZOOM call.SHE is responsible for not explaining to my pcp about celiac disease am I right?
    • Amy Barnett
      What is the best liquid multivitamin for celiac disease?
    • Jmartes71
      I've noticed with my age and menopause my smell for bread gives me severe migraines and I know this.Its alarming that there are all these fabulous bakeries, sandwich places pizza places popping up in confined areas.Just the other day I suffered a migraine after I got done with my mri when a guy with a brown paper bag walk in front of me and I smelled that fresh dough bread with tuna, I got a migraine when we got home.I hate im that sensitive. Its alarming these places are popping up in airports as well.I just saw on the news that the airport ( can't remember which  one)was going to have a fabulous smelling bakery. Not for sensitive celiacs, this can alter their health during their travel which isn't safe. More awareness really NEEDS to be promoted, so much more than just a food consumption!FYI I did write to Stanislaus to let them know my thoughts on the medical field not knowing much about celiac and how it affects one.I also did message my gi the 3 specialist names that was given on previous post on questions on celiac. I pray its not on deaf door.
×
×
  • 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.