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

Ate Gluten Just To See!

LoriG

By LoriG
in Coping with Celiac Disease

Recommended Posts

LoriG Contributor
LoriG
Posted

Ok, I've been gluten-free 7-1/2 months, but haven't gotten better. My main complaint is chronic fatigue. I also have Hashimoto's. So I decided to try some gluten because I really don't have an obvious symptom when I eat it. Last night we went to Pizza Hut and I ate pizza/breadsticks. I was expecting something awful to happen, but honestly no reaction!! After avoiding it for this long, something is wrong! I am meticulous about where it is in my food, don't eat at restaurants, careful in the kitchen..... I am so paranoid that I must be getting it in, but cannot figure this out at all. Why wouldn't I feel terrible from eating all of that? I was diagnosed by enterolab. Maybe they mixed me up with someone else? How can I continue this process when this happened? Any thoughts?

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

Celiac.com Sponsor (A8-M):


Ursa Major Collaborator
Ursa Major
Posted

After being gluten-free for 2 1/2 years, I have a very delayed reaction from gluten. The D and stomach cramps don't usually hit me for 24 to 48 hours after being exposed to gluten. So, your reaction might still come. Some get reactions nearly a week after the fact.

If you haven't had a reaction within a week, you can be sure you didn't react. Also, some people have to consistently eat gluten for a few days to a couple of weeks before it catches up with them and they get sick. Everybody is different. Just because you haven't reacted doesn't mean that you didn't do intestinal damage by eating the pizza.

JNBunnie1 Community Regular
JNBunnie1
Posted
After being gluten-free for 2 1/2 years, I have a very delayed reaction from gluten. The D and stomach cramps don't usually hit me for 24 to 48 hours after being exposed to gluten. So, your reaction might still come. Some get reactions nearly a week after the fact.

If you haven't had a reaction within a week, you can be sure you didn't react. Also, some people have to consistently eat gluten for a few days to a couple of weeks before it catches up with them and they get sick. Everybody is different. Just because you haven't reacted doesn't mean that you didn't do intestinal damage by eating the pizza.

Ditto. For me it's 48 to 72 hours.

AliB Enthusiast
AliB
Posted

The fact that you haven't really recovered after going gluten-free may suggest that some other food or foods could also be preventing your recovery. Those who are gluten-intolerant often also have problems with other things like dairy, corn, soy, etc. If the other foods are preventing recovery and still making you feel ill they could also be masking any reaction from the gluten. Because there is no noticeable improvement, you can't assume that your problem is not gluten.

There is also the possibility that you are getting a continuous 'supply' of hidden gluten without being aware of it, which would also restrict recovery. The stuff is so insidiously ingratiated into so many seemingly innocuous products that it is very difficult to avoid it at times.

You might get a better response by doing an elimination diet. Eating simply will help your body start to heal. It can take a while but is worth the effort. Try and restrict your diet to plain unprocessed and unadulterated meat, fish and poultry, fresh fruit and vegetables, some tolerated nuts and a little honey if you want something sweet.

It's annoying when you have gone through all this and don't seem to be getting anywhere, but there is likely to be a reason behind it somewhere!

kbtoyssni Contributor
kbtoyssni
Posted

It could also be that you get very mild reactions. I also had mostly chronic fatigue and joint/muscle pain as symptoms. My joints have been really painful recently, and I finally discovered I was eating some packaged Indian food with CC issues. It took a few weeks of eating the stuff for my joints to get really bad. But that doesn't mean it wasn't doing damage! It seems like non-GI symptoms take longer to show up.

Annaem Enthusiast
Annaem
Posted

I get a reaction several days after. Your symptoms don't have to be stomach related it may manifest in another way. My mom gets joint problems and heat to her feet. Also i dont know if 7 1/2 months is enough time to completely heal. Some people take longer than that, depending on age and how long youve had it. I wouldn't judge my body's response based on 7 1/2 months. I'd say give it another 4 months.

LoriG Contributor
LoriG
Posted
  • Author
I get a reaction several days after. Your symptoms don't have to be stomach related it may manifest in another way. My mom gets joint problems and heat to her feet. Also i dont know if 7 1/2 months is enough time to completely heal. Some people take longer than that, depending on age and how long youve had it. I wouldn't judge my body's response based on 7 1/2 months. I'd say give it another 4 months.

Thank you all for your responses. I did have a long talk with both my ND and nutritionist about this and why I didn't seem to react at all and neither one of them were surprised at all. They said based on how much damage I still have and because I have the chronic fatigue. I was just disappointed because I am paranoid I'm getting gluten in even though I'm so careful and now I truly won't know because I don't have an immediate reaction. I guess I'll keep plugging along like everyone else :)

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

Celiac.com Sponsor (A8-M):


MELINE Enthusiast
MELINE
Posted
Thank you all for your responses. I did have a long talk with both my ND and nutritionist about this and why I didn't seem to react at all and neither one of them were surprised at all. They said based on how much damage I still have and because I have the chronic fatigue. I was just disappointed because I am paranoid I'm getting gluten in even though I'm so careful and now I truly won't know because I don't have an immediate reaction. I guess I'll keep plugging along like everyone else :)

hello LoriG

Just want to say that for me too the reaction can take up to 2 days and has to be more than one gluten accident to realy feel it......

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. knitty kitty
      - knitty kitty replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

      In the study linked above, the little girl switched to a gluten free diet and gained enough weight that that fat pad was replenished and surgery was not needed. Here's the full article link... Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pmc.ncbi.nlm.nih.gov/articles/PMC6476019/
    2. knitty kitty
      - knitty kitty replied to Jordan Carlson's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Fruits & Veggies

      Hello, @Jordan Carlson, So glad you're feeling better. Tecta is a proton pump inhibitor. PPI's also interfere with the production of the intrinsic factor needed to absorb Vitamin B12. Increasing the amount of B12 you supplement has helped overcome the lack of intrinsic factor needed to absorb B12. Proton pump inhibitors also reduce the...
    3. knitty kitty
      - knitty kitty replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

      @pothosqueen, Welcome to the tribe! You'll want to get checked for nutritional deficiencies and start on supplementation of B vitamins, especially Thiamine Vitamin B 1. There's some scientific evidence that the fat pad that buffers the aorta which disappears in SMA is caused by deficiency in Thiamine. In Thiamine deficiency, the body...
    4. Scott Adams
      0

      Inmate with Celiac Disease Wins $630,000 After Jail Denies Gluten-Free Food

    5. trents
      - trents replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

      Wow! You're pretty young to have a diagnosis of SMA syndrome. But youth also has its advantages when it comes to healing, without a doubt. You might be surprised to find out how your health improves and how much better you feel once you eliminate gluten from your diet. Celiac disease is an autoimmune disorder that, when gluten is consumed, triggers an...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,019
    • Most Online (within 30 mins)
      7,748
    Nancy Adams
    Newest Member
    Nancy Adams
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

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

  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • knitty kitty
      Positive biopsy

      By knitty kitty · Posted

      In the study linked above, the little girl switched to a gluten free diet and gained enough weight that that fat pad was replenished and surgery was not needed.   Here's the full article link... Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pmc.ncbi.nlm.nih.gov/articles/PMC6476019/
    • knitty kitty
      Fruits & Veggies

      By knitty kitty · Posted

      Hello, @Jordan Carlson, So glad you're feeling better.   Tecta is a proton pump inhibitor.  PPI's also interfere with the production of the intrinsic factor needed to absorb Vitamin B12.  Increasing the amount of B12 you supplement has helped overcome the lack of intrinsic factor needed to absorb B12. Proton pump inhibitors also reduce the production of digestive juices (stomach acids).  This results in foods not being digested thoroughly.  If foods are not digested sufficiently, the vitamins and other nutrients aren't released from the food, and the body cannot absorb them.  This sets up a vicious cycle. Acid reflux and Gerd are actually symptoms of producing too little stomach acid.  Insufficient stomach acid production is seen with Thiamine and Niacin deficiencies.  PPI's like Tecta also block the transporters that pull Thiamine into cells, preventing absorption of thiamine.  Other symptoms of Thiamine deficiency are difficulty swallowing, gagging, problems with food texture, dysphagia. Other symptoms of Thiamine deficiency are symptoms of ADHD and anxiety.  Vyvanse also blocks thiamine transporters contributing further to Thiamine deficiency.  Pristiq has been shown to work better if thiamine is supplemented at the same time because thiamine is needed to make serotonin.  Doctors don't recognize anxiety and depression and adult onset ADHD as early symptoms of Thiamine deficiency. Stomach acid is needed to digest Vitamin C (ascorbic acid) in fruits and vegetables.  Ascorbic acid left undigested can cause intestinal upsets, anxiety, and heart palpitations.   Yes, a child can be born with nutritional deficiencies if the parents were deficient.  Parents who are thiamine deficient have offspring with fewer thiamine transporters on cell surfaces, making thiamine deficiency easier to develop in the children.  A person can struggle along for years with subclinical vitamin deficiencies.  Been here, done this.  Please consider supplementing with Thiamine in the form TTFD (tetrahydrofurfuryl disulfide) which helps immensely with dysphagia and neurological symptoms like anxiety, depression, and ADHD symptoms.  Benfotiamine helps with improving intestinal health.  A B Complex and NeuroMag (a magnesium supplement), and Vitamin D are needed also.
    • knitty kitty
      Positive biopsy

      By knitty kitty · Posted

      @pothosqueen, Welcome to the tribe! You'll want to get checked for nutritional deficiencies and start on supplementation of B vitamins, especially Thiamine Vitamin B 1.   There's some scientific evidence that the fat pad that buffers the aorta which disappears in SMA is caused by deficiency in Thiamine.   In Thiamine deficiency, the body burns its stored fat as a source of fuel.  That fat pad between the aorta and digestive system gets used as fuel, too. Ask for an Erythrocyte Transketolace Activity test to look for thiamine deficiency.  Correction of thiamine deficiency can help restore that fat pad.   Best wishes for your recovery!   Interesting Reading: Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pubmed.ncbi.nlm.nih.gov/31089433/#:~:text=Affiliations,tissue and results in SMAS.  
    • trents
      Positive biopsy

      By trents · Posted

      Wow! You're pretty young to have a diagnosis of SMA syndrome. But youth also has its advantages when it comes to healing, without a doubt. You might be surprised to find out how your health improves and how much better you feel once you eliminate gluten from your diet. Celiac disease is an autoimmune disorder that, when gluten is consumed, triggers an attack on the villous lining of the small bowel. This is the section of the intestines where all our nutrition is absorbed. It is made up of billions of tiny finger-like projections that create a tremendous surface area for absorbing nutrients. For the person with celiac disease, unchecked gluten consumption generates inflammation that wears down these fingers and, over time, greatly reduces the nutrient absorbing efficiency of the small bowel lining. This can generate a whole host of other nutrient deficiency related medical problems. We also now know that the autoimmune reaction to gluten is not necessarily limited to the lining of the small bowel such that celiac disease can damage other body systems and organs such as the liver and the joints and cause neurological problems.  It can take around two years for the villous lining to completely heal but most people start feeling better well before then. It's also important to realize that celiac disease can cause intolerance to some other foods whose protein structures are similar to gluten. Chief among them are dairy and oats but also eggs, corn and soy. Just keep that in mind.
    • pothosqueen
      Positive biopsy

      By pothosqueen · Posted

      26F!
×
×
  • 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.