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

Just Want To Feel Better


gluten-is-kryptonite

Recommended Posts

gluten-is-kryptonite Apprentice

I am still pretty new here. Diagnosed 4 months ago. Felt better pretty quickly on the Gluten-Free diet but still had "reactions". I found out theses reactions were due to leaky gut. Anyhow my first 3 months were pretty up and down but the 4th month was sheer heaven - until a week ago. I had french fries that were fried in the same oil as gluten foods. I knew this was an experiment- but I am not feeling better a week later. It must have really inflamed my gut. I am really upset about this and have no energy to do anything. I feel like I have a flu like symptoms. Just days before I was on top of the world at a race- got on the podium, had a major breakthrough and set a new personal best. I know I am on the right track overall but just feel like I took a huge step backwards. I went from that to not enough energy to get out of bed.

For the leaky gut I am taking-

glutamine

high quality fish oil

turmeric (just started)

culturelle

aloe vera juice

b complex

glutathione

muiltivite w/ iron

what am i missing? I think the autoimmune reaction from food leaking out of the gut is attacking my thyroid (at one point had a mis-diagnosis of hypothroid). My thyroid was a bit low but was not the cause - celiac is the cause of all this. should I be adding something for my thyroid?

Just want to feel better. I know I'm rambling but I can't talk about this stuff with people who don't understand and I know how good it feels when things are going well (didn't know what that felt liek until about a month ago). I was undiagnosed for many years.


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



Celiac.com Sponsor (A8-M):



mushroom Proficient

Reactions for some people can last longer than a week; next time you are tempted to live dangerously realize that you may suffer from it for a long time. There is nothing like experience to learn from.

Did you have a full thyroid work-up or just TSH, free T3 and T4, or maybe just TSH? Doctors are often reluctant to do full thyroid testing.

One thing you might add to your supplement regimen are some digestive enzymes to help break down your food. Celiac can negatively impact the ability of the pancreas to produce enough enzymes.

Hope you are feeling better soon and that you have learned the cross-contamination lesson ;)

pricklypear1971 Community Regular

When I'm glutened sometimes I must lay off the vitamins a while. Probiotics, enzymes yes. Vitamins, D's, iron - no.

Just a thought. Gives me nausea and makes me feel gross and exhausted. When my stomach settles down I start them back up.

Did they test you for Hashimotos? if you had a high tsh and are Hashis gluten-free may help but I doubt it will fix it, judging by others experiences (and mine). If your thyroid function has degraded to a certain point you need thyroid replacement. Hypothyroidism can cause extreme exhaustion, and it can be barely out of whack and give you terrible symptoms.

I've been glutened about 4 times since going gluten-free (that I know of). One time it set off an AI attack that lasted 2 months. I figured out (because my seasonal allergies got bad during this time) that antihistimines helped snuff down the ai attack. I took 1 children's Claritin every day, then every other day for a few months. It really helped. My ND wasn't thrilled with my solution but I weaned off them.

My other attacks have lasted a few weeks.

Btw blood work during that ai attack supported the ai attack theory. My TPO antibodies went up, tsh went sky high, crp elevated...I was a mess. Just had new blood work done and will find out results next week.

eatmeat4good Enthusiast

Yeah learning about cross-contamination is a hard lesson.

I tested french fries, then kissing a gluten eater, then products made on shared lines but with no gluten ingredients. Ugh to all of them. The reaction lasts weeks and it is hard to get out of bed and I can't wait to get back into it. I can't take all my vitamins either when healing. After a week or two I can.

I hope your reaction doesn't last long and you can stay gluten free.

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. - trents replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Disaccharide deficient, confusing biopsy results, no blood test

    2. - jenniber replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Disaccharide deficient, confusing biopsy results, no blood test

    3. - Samanthaeileen1 replied to Samanthaeileen1's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      7

      Thoughts? Non-endoscopic Celiac diagnosis in two year old

    4. - GlorietaKaro replied to GlorietaKaro's topic in Super Sensitive People
      5

      Am I nuts?

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

    • Total Members
      132,814
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • trents
      So the tTG-IGA at 28 is positive for celiac disease. There are some other medical conditions that can cause elevated tTG-IGA but this is unlikely. There are some people for whom the dairy protein casein can cause this but by far the most likely cause is celiac disease. Especially when your small bowel lining is "scalloped". Your Serum IGA 01 (aka, "total IGA") at 245 mg/dl is within normal range, indicating you are not IGA deficient. But I also think it would be wise to take your doctor's advice about the sucraid diet and avoiding dairy . . . at least until you experience healing and your gut has had a chance to heal, which can take around two years. After that, you can experiment with adding dairy back in and monitor symptoms. By the way, if you want the protein afforded by dairy but need to avoid casein, you can do so with whey protein powder. Whey is the other major protein in dairy.
    • jenniber
      hi, i want to say thank you to you and @trents   . after 2 phone calls to my GI, her office called me back to tell me that a blood test was “unnecessary” and that we should “follow the gold standard” and since my biopsy did not indicate celiac, to follow the no dairy and sucraid diet. i luckily have expendable income and made an appt for the labcorp blood test that day. i just got my results back and it indicates celiac disease i think 😭   im honestly happy bc now i KNOW and i can go gluten free. and i am SO MAD at this doctor for dismissing me for a simple blood test that wouldn’t have cost her anything !!!!!!!!!!! im sorry, im so emotional right now, i have been sick my whole life and never knew why, i feel so much better already   my results from labcorp:   Celiac Ab tTG TIgA w/Rflx Test Current Result and Flag Previous Result and Date Units Reference Interval t-Transglutaminase (tTG) IgA 01 28 High U/mL 0-3 Negative 0 - 3 Weak Positive 4 - 10 Positive >10 Tissue Transglutaminase (tTG) has been identified as the endomysial antigen. Studies have demonstrated that endomysial IgA antibodies have over 99% specificity for gluten sensitive enteropathy. Immunoglobulin A, Qn, Serum 01 245 mg/dL 87-352
    • JoJo0611
      Thank you this really helped. 
    • Samanthaeileen1
      Okay that is really good to know. So with that being positive and the other being high it makes sense she diagnosed her even without the endoscopy. So glad we caught it early. She had so many symptoms though that to me it was clear something was wrong.   yeah I think we had better test us and the other kids as well. 
    • GlorietaKaro
      One doctor suggested it, but then seemed irritated when I asked follow-up questions. Oh well—
×
×
  • 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.