• Ads by Google:

    Get email alerts Celiac.com E-Newsletter

    Ads by Google:

       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Just Want To Feel Better

4 posts in this topic

Recommended Posts

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-


high quality fish oil

turmeric (just started)


aloe vera juice

b complex


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.

Share this post

Link to post
Share on other sites
Ads by Google:
Ads by Google:

mushroom    1,205

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 ;)

Share this post

Link to post
Share on other sites

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.

Share this post

Link to post
Share on other sites
eatmeat4good    313

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.

Share this post

Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now


  • Forum Statistics

    • Total Topics
    • Total Posts
  • Member Statistics

    • Total Members
    • Most Online

    Newest Member
  • Popular Now

  • Topics

  • Posts

    • About 10 days ago I think I ate most of a wheat tortilla (the restaurant stuck to their story that it was a corn tortilla like I had ordered, but I don't believe them - I'm pretty sure it was wheat). Nothing happened in the first couple of days, then I developed intermittent chest tightness, which was one of my primary symptoms before my diagnosis, the others being bloating, food sitting like a rock in my stomach after eating, exercise intolerance, and weight loss.  Anyone else get chest tightness as a symptom of being glutened? I haven't felt this symptom since I became very strict with cross-contamination.
    • I had 23andme testing which showed I have genes DQ2.5 and DQ8. When I learned this I decided to stop eating gluten to PREVENT getting celiac, but didn't worry about cross-contamination. A year later I got sick, and eventually had an endoscopy which showed Marsh 1. My blood tests were negative, as one would expect for anyone eating gluten-free. My gastroenterologist told me I could either decide to live like a celiac, or do the full 12-week gluten challenge. I cleaned up my kitchen and started being very careful with eating away from home, and my symptoms went away.
    • The beginning of your story sounds very much like mine. I stopped eating gluten regularly when I adopted a mostly paleo diet years ago (bonus: my lifelong canker sores disappeared!). When I got 23andme testing done and learned I have both high-risk celiac genes, I stopped eating gluten altogether, thinking I couldn't trigger celiac if I didn't have gluten exposure. But, since I didn't have a celiac diagnosis or symptoms, I wasn't careful about cross-contamination.  Then I got sick. My symptoms were vague: bloating, food sitting like a rock in my stomach after eating, exercise intolerance, weight loss, chest tightness. I had a bunch of tests, tried omeprazole, and eventually had an endoscopy. Because I hadn't eaten gluten in a year, I didn't expect any results suggesting celiac, but sure enough, my biopsies came back as Marsh 1: inconclusive, but all the other reasons to cause this result had already been ruled out or were very unlikely. I then had bloodwork for celiac, which was negative, as expected for anyone on a gluten-free diet. At this point I was sent to a gastroenterologist, who said she could not definitively diagnose me with celiac, and that my options were either to assume I have celiac and live like a celiac, or to do the full 12-week gluten challenge and then repeat all the testing. i didn't want to take the risk of triggering another autoimmune disease by doing the gluten challenge, so I cleaned up my kitchen, replaced my cutting boards, cast iron pans, and anything plastic or silicone, and confined gluten to one corner of the counter. I started being the annoying person at restaurants and potlucks asking a thousand questions. And my symptoms went away. i still don't know whether I have celiac. I struggle with the restrictions it places on my life outside of my home (travel, social life). Periodically I wonder whether I shoukd just do the gluten challenge so I know. But I'm afraid of the possible risks. Your allergist did you a great disservice my telling you to go on a gluten-free diet without testing you for celiac. But that ship has sailed. At this point I would say your choices are the same as mine: either do a complete 12-week gluten challenge and then retest, or decide to live as if you had a firm celiac diagnosis. It can be a tough decision. Good luck and I hope you figure it out and get better very soon!  
    • We do not have gluten in my home other then the bread he  Uses to make school lunch sandwiches.  however I am divorced so he spends a good part of the week at his dad's as well where he can eat whatever he wants. My son is a terrible eater and has been very picky since he was 2 years old, he's now 6.  Up until recently he literally would only eat 5 things. He once vomited all over my kitchen after I insisted that he try watermelon.   In the last several months he's been expanding what it is that he will eat however. Unfortunately still no fruits or vegetables, I have to sneak those In via juice.  it is actually one of the reasons that  I am not in a hurry to get him tested. I have to return to Boston to see my specialist next summer and we are going to take my son with us then for testing.  so it buys me time to expand his food list just in case we have to take half of it away.  my brother's children however, because he's a farmer, have always eaten a lot of Whole foods.  his house is totally gluten free but his mother-in-law will take his daughter out for treats occasionally. She does not seem to suffer any adverse reactions. My nephew on the other hand was always constipated and bloated when he was on gluten.  The kids will literally just walk out into the garden and grab a cucumber and start eating it basically.  I'm not even exaggerating. I am envious that his kids will do that and I wish that I had  tried harder with my son when he was younger instead of always defaulting to what he would eat.  I know my nephew will verbalize a memory of not liking some of the changes that were made initially at their house, like with the gluten-free bread. But then he will say he likes it now. So I think kids do definitely adjust  their preferences.  unless of course you're my son, and then the neighbors are wondering whether or not they should call Child Protective Services because  There is an awful lot of screaming next door at dinner time.  
  • Upcoming Events