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

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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      128,337
    • Most Online (within 30 mins)
      7,748

    jojocle
    Newest Member
    jojocle
    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

    • cristiana
      I'd like to second supplementation.  Around the time of my diagnosis and for a good while afterwards I had twitching muscles, including my face, as well as pins and needles and numbness.  We do have tremors in my family anyway, regardless of being coeliac, so I can't really comment on that. If you can find out where you are with your iron levels and B12, that's a good start.  I am not sure where you are posting from but in the UK normal lab results for B12 are quite a bit lower than in other countries, so you might find if you are borderline you will get some improvement by continuing to supplement that.   I found taking magnesium also incredibly helpful against facial twitches. I don't know about you, but all these symptoms increased my anxiety levels as I was worried about them.  That only served to make the symptoms worse.  So it might be worth looking into addressing any underlying anxiety issues.   I still notice that if I'm nervous, or worried, my blood sugar levels are down, some of the symptoms comes back temporarily.  It's like there is still a bit of a weakness there.
    • knitty kitty
      Hello, @Itsabit, Your journey sounds very similar to mine.   I'm very concerned about your diet since you say you don't eat a lot of meat, which is the main source of B vitamins.  Nutritional deficiencies go along with Celiac Disease.  Blood tests are not accurate measurements of deficiency states.  The body robs stored vitamins from organs to circulate in the bloodstream to supply the brain and heart.  You can have deficiency symptoms before blood levels change. I have a hypersensitivity to sulfites, so much so that I had to switch my toothpaste to one that doesn't contain Sodium Lauryl Sulfate.  SLS can cause oral irritation as a side effect, too.   My mouth would burn and I avoided certain foods.  Dapsone contains sulfites, as do antibiotics.  Treatment with sulfites can precipitate a Thiamine deficiency disorder because sulfites cut thiamine in two making it useless. https://pubmed.ncbi.nlm.nih.gov/35506963/ https://pmc.ncbi.nlm.nih.gov/articles/PMC10506142/ I have an allergy to nickel, also.  Zinc helps keep other metals in balance in the body.  Zinc is also terribly important to skin health and oral health. https://pubmed.ncbi.nlm.nih.gov/8445075/ https://pmc.ncbi.nlm.nih.gov/articles/PMC11274920/ https://pubmed.ncbi.nlm.nih.gov/1977254/ Thiamine (Vitamin B 1) deficiency disorder symptoms and altered thiamine metabolism can occur after radiation or chemo.   Thiamine and Niacin B 3 are important in nerve conduction.  When I was very malnourished, I had paresthesia that made me feel itchy all over, and made my dermatitis herpetiformis extremely unbearable.  The form of Niacin that causes flushing, Nicotinic Acid (not the same as nicotine in cigarettes) is beneficial because the flushing helps open the small capillaries in the skin which allows the antibodies to be cleared and disposed.  Pellagra can occur in Celiac Disease.   I had it, and my doctor didn't properly diagnose it, either.   I had a rash around my neck, Casal's Necklace, along with a blistering rash on my arms and any skin exposed to the sun.   https://pubmed.ncbi.nlm.nih.gov/8445075/ https://cgp.iiarjournals.org/content/10/4/169 https://pmc.ncbi.nlm.nih.gov/articles/PMC11722086/ https://pmc.ncbi.nlm.nih.gov/articles/PMC6780714/ https://pmc.ncbi.nlm.nih.gov/articles/PMC10229844/ https://pubmed.ncbi.nlm.nih.gov/1977254/ You should be checked for more than just B12 deficiency.  The eight B vitamins work together, and we need more of them when we're trying to heal.  They are water soluble, so the body can easily excrete them if not needed. Have you had your Vitamin D level checked?  Vitamin D regulates the immune system and lowers inflammation.   I hope you can find some benefit from my experiences.  Keep us posted on your progress.   P.S.  When trying not to itch the dermatitis herpetiformis, if you press gently on a large area (press with your whole hand) above the itchy spot, the itchiness goes away.  The bigger area of stimulation drowns out that one jangling dermatitis herpetiformis itchy nerve in the brain. For skin care products, I use tallow balm which is absorbed better into the skin than petroleum products or plant products.  Tallow balm (Vintage Traditions is my favorite) helps my Dermatitis Herpetiformis spots look and feel better quickly.  Tallow soap and olive oil soap is beneficial as well.
    • knitty kitty
      Hello, @Jack Common, I know how frustrating health mysteries can be. Perhaps you're having a reaction to the medication you were given for the giardiasis you mentioned in another post. The giardiasis infection would account for the high Igg results.  Have you been reinfected? The site I've linked below has lots of information about the long term consequences of being treated with a medication frequently prescribed for giardiasis infection.   https://hormonesmatter.com/metronidazole-toxicity-doctor-denial/ https://hormonesmatter.com/?s=metronidazole https://pmc.ncbi.nlm.nih.gov/articles/PMC3870550/ Please let us know if your symptoms may be due to this reaction to the prescription for giardiasis. Best wishes.
    • knitty kitty
      Hello, @Jack Common, I know how frustrating health mysteries can be. Perhaps you're having a reaction to the medication you were given for the giardiasis. The giardiasis infection would account for the high Igg results.  Have you been reinfected? The site I've linked below has lots of information about the long term consequences of being treated with a medication frequently prescribed for giardiasis infection.   https://hormonesmatter.com/metronidazole-toxicity-doctor-denial/ https://hormonesmatter.com/?s=metronidazole https://pmc.ncbi.nlm.nih.gov/articles/PMC3870550/ Please let us know if your symptoms may be due to this reaction to the prescription for giardiasis. Best wishes.
    • Itsabit
×
×
  • Create New...