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 A Question

Hippie

By Hippie
in Coping with Celiac Disease

Recommended Posts

Hippie Newbie
Hippie
Posted

I was just diagnosed...and because I have a bad doctor that didn't tell me much, and I can't figure it out looking anywhere on the internet...will this ever go away? Or am I stuck with this for life?

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

Celiac.com Sponsor (A8-M):


fedora Enthusiast
fedora
Posted

I am sorry for your frustration. You have arrived at a good place. Welcome. Were you diagnosed with Celiac Disease? If you were, this is lifelong. I am sorry if this upsets you. There are many wonderful people here willing to help you figure it all out. There are also books, magazines, etc.

This is where the real experts are- the ones who are living with it. Good luck, May your healing begin!

home-based-mom Contributor
home-based-mom
Posted
I was just diagnosed...and because I have a bad doctor that didn't tell me much, and I can't figure it out looking anywhere on the internet...will this ever go away? Or am I stuck with this for life?

No, this will not ever go away. It's unfortunate that you have a bad doctor - read for a bit in this forum and you will discover that you are not alone in that one!

This forum is a God send for information and support. Hang out here and you will learn so much.

This may sound harsh, but the whole transition will be much easier for you if you if you ditch the victim mentality. You were stuck being sick and now you know what was wrong. There is a way to make yourself well again and you can do it. There is a learning curve and you will fall as we all have, but we learn and we get better and eating well gets easier. You are now in control of what you eat and have taken the first steps to getting your health back.

Choose to eat healthy - the pre-packaged, over-processed, preservative-laden American isn't healthy for anyone.

Gluten-free eating does not have to be boring. The other night we had lasagna and chocolate cake - all gluten free! :)

Welcome!

Kilika Newbie
Kilika
Posted

I'm sorry to say, but as far as I know any research I've done says you gotta go gluten-free for life. Kinda like needing insulin for life as a diabetic. That's how I understand it, can others confirm??

flourgirl Apprentice
flourgirl
Posted

Celiac isn't exactly like Diabetes....you don't have to conastantly monitor your body sysems! All you have to do is to be careful.....oh, so careful......of what it is that goes into your mouth! The initial healing may take a while...depending on just how sick you are. Patience, and trust, and feel free to lean on any of these wonderful, helpful people who have been there, done that. If you're lucky, gluten may be your only concern. Many have Diabetes as well as Celiac...a very good many have other intolerances as well and have to be doubly vigilant about their foods.

Celiac is more like a LIFE Sentence....in that you must eat healthy. You can eat junk foods, just not gluten foods. The less processed the better. That is true of everyone, I wish I could get all of my loved ones to eat simpler, more natural foods for better health.

Anyway...attitude is a lot of it. Changes may get you feeling down..there is depression that comes with Celiac, but improves with health. If you do your best to look at it all with a positive attitude, it will all go better for you. Get as much info. as you can and just keep trying. Good luck and good health to you!

happygirl Collaborator
happygirl
Posted

Celiac is a life-long condition.

I recommend www.celiacdiseasecenter.columbia.edu and www.celiaccentral.org for more information (besides this site!)

Glutina Rookie
Glutina
Posted

Hi!

I know that this might seem like an obvious question...but have you thought of switching doctors or getting a second opinion..or going to a G.I. specialist? You should never feel like you have to be stuck with a bad doc. I have personally been lucky enough to a have a WONDERFUL doc who referred me to a great specialist, but am realizing after joining this forum that this is not the case for many! This is your life and YOUR health, and you get to choose who helps keep you healthy....docs included!

-Glutina

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

Celiac.com Sponsor (A8-M):


Hippie Newbie
Hippie
Posted
  • Author

Well I have had really bad pain and uh...digestive problems...I'll just call it that? That hit me out of nowhere. Plus I've been sleeping for about 12 hours a day. And I have no energy. This has been going on a for a couple months. First my doctor told me to cut out dairy. I did that and didn't get better. Then they diagnosed me with IBS and gave me pills for that, called bentyl. That didn't help either. It jst kept getting worse. Then I ended up in the hospital. And they still never gave me a GI or a CT scan or anything. They just took my blood and a stool sample and they said everything was fine. They told me to try cutting out wheat, so I've just been eating fruit, vegetables, meat, and corn tortillas for the past couple weeks, and I feel a little better, so my doctor told me this is it. But sometimes I'm still in a lot of pain. I'm going to see a GI doctor on March 13th though just to make sure there's nothing else there.

fedora Enthusiast
fedora
Posted

Hi,

Healing can take a while. If you noticed improvement that's great, but realize it may take awhile. Two weeks is not long enough. There are specific blood tests that doctors can order and a biopsy that a GI can do. someone else would have more info on that than me. However, there are people who test negative on blood test and their biopsy shows no damage, but still are gluten intolerant. Please realize, gluten intolerance is more than wheat. It also includes rye, oats, barley, and spelt. You may not like your doctor, but it sounds encouraging that you DR would suggest this. There are people who have been dismissed by their doctors or their doctors refuse to believe they have gluten intolerance because their tests were negative. Good luck!

nikky Contributor
nikky
Posted

welome to the forum.. as the others have said this is life long, there is no cure

the thing about coeliac is that we are in controll of our health, only you can stop yourself eating gluten and therefore you can stop yourself getting sick.

healing takes time and there is the possibility of deficiencies and other intolerances to conted with (lactose intolerance seems pretty common among coeliacs).

eat healthy, and get as much variation in your diet as possible.

there are good celiac disease aware drs out there, im sorry that youve found one of the many bad ones but with help and support from the people on this site you will get there. Good luck. :)

Lshetler Rookie
Lshetler
Posted
They told me to try cutting out wheat, so I've just been eating fruit, vegetables, meat, and corn tortillas for the past couple weeks, and I feel a little better, so my doctor told me this is it. But sometimes I'm still in a lot of pain. I'm going to see a GI doctor on March 13th though just to make sure there's nothing else there.

I didn't notice much difference at all at first. The only way I knew I was intolerant to gluten was that when I went off it for a week, if I ate a slice of bread I wanted to die, lol. It wasn't until I was on a strict diet of only rice, veggies, and unseasoned chicken/fish that I felt better, and do I mean better! Now I can eat fruit as well; it takes time for the intestines to heal.

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. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      results from 13 day gluten challenge - does this mean I can't have celiac?

      If lectins were my problem, I would react to wheat germ (the highest source of wheat lectins) and beans. I don't. I only react to bread and pasta, which are the highest sources of gluten. Therefore, my issue is wheat-specific (Gluten/ATIs), not a general lectin issue. I have eaten a supposedly high lectin diet (I say supposedly because lectin...
    2. knitty kitty
      - knitty kitty replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      results from 13 day gluten challenge - does this mean I can't have celiac?

      @catnapt, Wheat germ contains high amounts of lectins which are really hard to digest and can be irritating to the digestive tract. They can stimulate IgG antibody production as your blood test shows. Even beans have lectins. You've simply eaten too many lectins and irritated your digestive tract. You may want to allow your digestive tract...
    3. knitty kitty
      - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      49

      My journey is it gluten or fiber?

      I take Now B-1 (100 mg) Thiamine Hydrochloride, and Amazing Formulas L-Tryptophan (1000 mg). Both are gluten free and free of other allergens. I've taken them for a long time and haven't had a problem with them. I take Vitamin A from BioTech called "A-25". It's gluten and allergen free and made in the USA. It's a powder form of Vitamin A. ...
    4. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      results from 13 day gluten challenge - does this mean I can't have celiac?

      good luck! vital wheat gluten made me violently ill. I will touch the stuff ever again.
    5. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      results from 13 day gluten challenge - does this mean I can't have celiac?

      I wouldn't consider this lucky. I can NOT tolerate the symptoms. And I googled it and I was not even getting 10 grams of gluten per day and I was extremely ill. They'd have to put me in the hospital. I'm not kidding. I will have my first appt with a GI dr on March 4th I will not eat gluten again - at least not on purpose ...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,368
    • Most Online (within 30 mins)
      7,748
    Klairep
    Newest Member
    Klairep
    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
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      If lectins were my problem, I would react to wheat germ (the highest source of wheat lectins) and beans. I don't. I only react to bread and pasta, which are the highest sources of gluten. Therefore, my issue is wheat-specific (Gluten/ATIs), not a general lectin issue.   I have eaten a supposedly high lectin diet (I say supposedly because lectin content in these foods is greatly reduced by proper cooking and I eat very few of those foods raw, and even then, rarely!!) for years. My health has improved greatly on my whole foods plant forward diet. I have asked all my drs and a registered dietician about my diet, asked if eating such a high amnt of fiber might interfere with the digestion of any other nutrients and the answer has always been NO.     while doing the gluten challenge I did not eat ANY wheat germ (since it doesn't have hardly any gluten, and I was too sick from the bread and pasta to want to eat much anyway) I will NOT put that poison in my body again. That was a horrific experience and if this is what most celiac patients have to deal with, I am very sorry for them I don't care if I have celiac or NCGS I won't intentionally cause myself that much pain and suffering it's not worth it.  
    • knitty kitty
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By knitty kitty · Posted

      @catnapt,  Wheat germ contains high amounts of lectins which are really hard to digest and can be irritating to the digestive tract.  They can stimulate IgG antibody production as your blood test shows.   Even beans have lectins.  You've simply eaten too many lectins and irritated your digestive tract.   You may want to allow your digestive tract to rest for a week, then start on gluten in "normal" food, not in concentrated vital wheat gluten. This explains it well: Lectins, agglutinins, and their roles in autoimmune reactivities https://pubmed.ncbi.nlm.nih.gov/25599185/
    • knitty kitty
      My journey is it gluten or fiber?

      By knitty kitty · Posted

      I take Now B-1 (100 mg) Thiamine Hydrochloride, and Amazing Formulas L-Tryptophan (1000 mg).   Both are gluten free and free of other allergens.  I've taken them for a long time and haven't had a problem with them. I take Vitamin A from BioTech called "A-25".  It's gluten and allergen free and made in the USA.  It's a powder form of Vitamin A.  I was having trouble digesting fats at one point, but found I tolerated the powder form much better and have stuck with it since.   Tryptophan and Vitamin A help heal the intestines as well as improves skin health.  I get Dermatitis Herpetiformis and eczema flairs when my stomach is upset.  So I'm healing the outside as well as the inside.   I take one 1000 mg Tryptophan before bedtime.   With the Thiamine HCl, take 100 mg to start.  If you don't notice anything, three hours later take another. You can keep increasing your dose in this manner until you do notice improvement.  Remember not to take it in the evening so it won't keep you too energized to sleep. When I first started Thiamine HCl, taking 500 mg to 1000 mg to start was recommended.  If you've been thiamine insufficient for a while, you do notice a big difference.  It's like the start of a NASCAR race: Zoom, Zoom, turn it up!   This scared or made some people uncomfortable, but it's just your body beginning to function properly, like putting new spark plugs in your engine.  I took 1000 mg all at once without food.  It kicked in beautifully, but I got a tummy ache, so take with food.  I added in Thiamine TTFD and Benfotiamine weeks later and felt like I was Formula One racing.  So cool.  You may feel worse for a couple days as your body adjusts to having sufficient thiamine.  Feels sort of like you haven't cranked your engine for a while and it backfires and sputters, but it will settle down and start purring soon enough.  Adjust your dose to what feels right for you, increasing your dose as long as you feel improvement.  You can reach a plateau, so stay there for several days, then try bumping it up again.  If no more improvements happen, you can stay at the plateau amount and experiment with increasing your Thiamine TTFD.  It's like being your own lab rat.  LoL Yes, take one Benfotiamine at breakfast and one at lunch.  Take the B Complex at breakfast. Take the TTFD at breakfast and lunch as well.  I like to take the vitamins at the beginning of meals and the NeuroMag at the end of meals.   You may want to add in some zinc.  I take Thorne Zinc 30 mg at breakfast at the beginning of the meal.   Are you getting sufficient Omega Threes?  Our brains are made up mostly of fat.  Flaxseed oil supplements, sunflower seed oil supplements (or eat the seeds themselves) can improve that.  Cooking with extra virgin olive oil, avocado oil, or coconut oil is also helpful.   @Wheatwacked likes phosphotidyl choline supplements for his Omega Threes.  He's also had dramatic health improvement by supplementing thiamine.  You're doing great!  Thank you for sharing your journey with us.  This path will smooth out.  Keep going!  
    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      good luck! vital wheat gluten made me violently ill. I will touch the stuff ever again.  
    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      I wouldn't consider this lucky. I can NOT tolerate the symptoms. And I googled it and I was not even getting 10 grams of gluten per day and I was extremely ill. They'd have to put me in the hospital. I'm not kidding.   I will have my first appt with a GI dr on March 4th   I will not eat gluten again - at least not on purpose   they are going to have to come up with a test that doesn't require it. 
×
×
  • 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.