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

I Honestly Felt Better When I Was On Gluten


jasonD2

Recommended Posts

jasonD2 Experienced

Sure I was constipated and didnt go for 2-3 days but i was able to keep my weight on and didnt have all these other food sensitivities. i feel like ever since i cut gluten out i started developing more and more problems. anyone understand why this is going on? shouldnt it have been the complete opposite? i know i shouldnt think this way but i feel like my health is going to continue to deteriorate and there is nothing i can do about it. i havent had blood work in over a yr and really need to go for one but im terrified that they will find something new thats wrong with me. last time my liver ALT enzyme was a little high but what if its 5x higher and what if there are other problems? ive been ignoring all my health issues for the past 8 months & i think i need to start getting more tests and get back on track


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



Celiac.com Sponsor (A8-M):



Niebr Collaborator

I honestly am the same way, I refuse to take aspirin. I refuse just about any bad medical advice from anyone except a hospital. And even then i question them. Go get the tests done, its better than sitting there going out of your mind wondering. believe me you can do that one easily if you don't know for sure.

burdee Enthusiast

Sure I was constipated and didnt go for 2-3 days but i was able to keep my weight on and didnt have all these other food sensitivities. i feel like ever since i cut gluten out i started developing more and more problems. anyone understand why this is going on? shouldnt it have been the complete opposite? i know i shouldnt think this way but i feel like my health is going to continue to deteriorate and there is nothing i can do about it.

My history is similar to yours. I thought abstaining from gluten would eliminate my gut symptoms. However, gluten was just the tip of my health 'iceberg'. When symptoms continued I took allergy tests and was diagnosed with 6 more food allergies. Abstaining from those foods didn't eliminate all my symptoms. So I kept getting stool tests, got diagnosed with 8 different gut bugs, and treated those bugs over a four year period. Finally I found a doc who looked for causes of my susceptibility to gut bugs. We discovered I had low stomach acid, low white blood cells, low vitamin D levels and low thyroid levels, which all lowered my immunity. Treating all that FINALLY eliminated my symptoms (constipation, bloating, cramping pain, recurrent respiratory infections). All that took 7+ years.

I suspect years of undiagnosed celiac disease allowed me to develop 6 more allergies as well as Hashimoto's thyroiditis. I know that low stomach acid allowed me to develop intestinal infections from food born bacteria and parasites. Taking years of antibiotics (for bladder infections) w/o taking probiotics allowed me to develop candida. Taking vancomycin for C-diff and Iodoquinol for Dientamoeba fragilis decreased my white blood cell level, which lowered my immunity to respiratory infections.

Undiagnosed celiac disease caused other problems. Treating those problems caused more problems. However, I finally resolved my symptoms thanks to a naturopath who looked at my whole health history and tested everything, rather than just chasing my gut bugs.

So hang in there. Keep getting tested and treat whatever you have. Especially look for causes of your symptoms. You probably had celiac disease and those 'food sensitivities' much longer than you suspect. Perhaps your health problems are all interrelated as mine were. Eventually you will recover, esp. if you take responsibility for your health and just keep working on recovery. I may be 64 years old, but I feel much healthier now than I did during my 40s.

jasonD2 Experienced

Thanks Sue- yes i know your history by heart already ;-) ive put testing and all that stuff on hold just cause i needed a break from it all but gonna go back soon and see where I am. will keep u posted

viviendoparajesus Apprentice

i agree in some ways i too felt better on gluten. i feel like i crashed, got diagnosed, stopped crashing, and switched symptoms. on gluten, i had constipation, stomachaches, headaches, and skin problems. about a year ago, i was so bloated, could not lose weight, and kept getting infections. off gluten, i could go the bathroom, headaches were less often and severe, my skin cleared up a lot. since then/ in the past year, i still have stomachaches, i have nausea and dizziness i do not ever remember having before and i have memory problems and am itchier more often and it is worse than before. should not i be having less symptoms not more? so i can relate to what you are saying. i agree should not we feel better. it depends on my mood and how things are going sometimes i hold on to hope and believe i will get better. other times i just feel like i am getting worse and will continue to feel this way or get worse. i would like to know what is going on. i wish i could get lab work done but doctors make it such a hassle. i do not want to waste time and energy if nothing is wrong cannot you just send me a card or we work off no news is good news. the other doctors will not even do tests for me. i am moving more toward companies that will just let me have the tests. i would rather know because i think knowledge is power. i would love to find a health professional i could work with. i think that could help you too because while we are experts on ourselves and life with celiac's/ gluten intolerance we do not know all the medicine and stuff doctors do. ignoring health problems does not fix them or make them go away. that said i think sometimes all this is overwhelming and depressing so i think it can be good to take a break but i think sometimes we need to get help. best wishes!

burdee Enthusiast

Thanks Sue- yes i know your history by heart already ;-) ive put testing and all that stuff on hold just cause i needed a break from it all but gonna go back soon and see where I am. will keep u posted

Sorry to bore you with the details, but I wanted to tell you with my story that you can recover if you just keep working on your health. I know how frustrating recovery can be, esp. when I think I'm finally well and my symptoms return. I was doing very well until 3 weeks ago when I got contaminated (I suspect dairy from my symptoms) at a restaurant which I trusted for years. I've eaten the same entree over a dozen times and never reacted. However, I visited the restaurant on a very busy night. Somehow my entree was contaminated, even though I couldn't see any signs of allergens on my plate. At first I suspected another gut bug, but my symptoms followed the usual pattern of a dairy reaction (10 days of cramping gut pain and constipation). I'm back to my normal healthy self now. Nevertheless, I learned to be more careful, even in restaurants where I've never had problems. Abstaining from 7 food allergens can be challenging at times. Nevertheless, I'm so much healthier now than most people my age.

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. - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      My journey is it gluten or fiber?

    2. - 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?

    3. - 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?

    4. - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      My journey is it gluten or fiber?

  • 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

    • xxnonamexx
      I don't know if I am getting sufficient Omega Threes. I read about  phosphotidyl choline may cause heart issues. I will have o do further research on heathy Omega 3 supplements or from foods. Is there a blood test that can tell you everything level in your system such as Thiamine, Benfotiamine levels etc? Thanks
    • catnapt
      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
      @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
      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
      good luck! vital wheat gluten made me violently ill. I will touch the stuff ever again.  
×
×
  • 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.