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

Apparently You Guys Were Right, It's All In My Head!


Renegade

Recommended Posts

CR5442 Contributor

My glutening symptoms show up slowly over two days.  Firstly I feel tired and woozy after about an hour an a half, then insanely hungry for about a day, then very poorly with fever, flu symptoms for about 12 hours, then very poorly tummy and water retention, irritability, tiredness etc for about 3 weeks. Next time it might be different.  This was the first real glutening I've had in two years.  Clean home prepared food is by far the best for me!


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



Celiac.com Sponsor (A8-M):



  • Replies 106
  • Created
  • Last Reply
notme Experienced

My glutening symptoms show up slowly over two days.  Firstly I feel tired and woozy after about an hour an a half, then insanely hungry for about a day, then very poorly with fever, flu symptoms for about 12 hours, then very poorly tummy and water retention, irritability, tiredness etc for about 3 weeks. Next time it might be different.  This was the first real glutening I've had in two years.  Clean home prepared food is by far the best for me!

right - *completely* different than any other reaction i/we have to other foods - when you stay/eat clean enough and are well for a good while, a glutening will be very easy to identify, am i right?  not D for a day, say, like when i eat something that irritates my guts or dairy which is gassy and uncomfortable.  it starts with a headache, b%$@#iness, tired tired tired for me and i'm all like o sh!t here it comes.  left side ribcage pain is a dead giveaway for me.  go directly to bed, do not pass the bathroom, do not collect 200 dollars.  see ya in 2 weeks :(  

 

it'll make you smarten up in a hurry - eating out 'just anywhere' and most packaged foods are off limits for me.  mleh - it's cheaper and easier to just make your meals yourself from 'plain foods' anyway.  i am blessed to be home at this time in my life.  i don't know how i worked all those years - i must have been a zombie.  and we won awards in my office!  so, i was good at it!  (haha maybe because i was so cranky all the time and my profession is on the edge of 'cut-throat" hahahaa)  i was always late, though.  one time, for two months my boss had to pick me up and bring me to work because i had vertigo so bad i couldn't drive at all.  felt like i was falling off the road and i had panic attacks.  i'm saying extra prayers right now for y'all who are trying to work a job while dealing with this all.  God bless you!  

answerseeker Enthusiast

right - *completely* different than any other reaction i/we have to other foods - when you stay/eat clean enough and are well for a good while, a glutening will be very easy to identify, am i right?  not D for a day, say, like when i eat something that irritates my guts or dairy which is gassy and uncomfortable.  it starts with a headache, b%$@#iness, tired tired tired for me and i'm all like o sh!t here it comes.  left side ribcage pain is a dead giveaway for me.  go directly to bed, do not pass the bathroom, do not collect 200 dollars.  see ya in 2 weeks :(

 

it'll make you smarten up in a hurry - eating out 'just anywhere' and most packaged foods are off limits for me.  mleh - it's cheaper and easier to just make your meals yourself from 'plain foods' anyway.  i am blessed to be home at this time in my life.  i don't know how i worked all those years - i must have been a zombie.  and we won awards in my office!  so, i was good at it!  (haha maybe because i was so cranky all the time and my profession is on the edge of 'cut-throat" hahahaa)  i was always late, though.  one time, for two months my boss had to pick me up and bring me to work because i had vertigo so bad i couldn't drive at all.  felt like i was falling off the road and i had panic attacks.  i'm saying extra prayers right now for y'all who are trying to work a job while dealing with this all.  God bless you!  

 

 

yes I really feel for the people that have to work. I couldn't even imagine trying to hold down a job feeling the way I have. I do homeschool and last year was bad. I barely made it through the day.

Celiac Mindwarp Community Regular

I just make a few fork holes in a potato and throw it in the microwave for 5 mins at a squeeze. Or pop a few in the oven at a time, then keep them in the fridge to heat up.

I have been at home with the kids a while, but a year gluten-free and I am volunteering 2 to 3 days a week and planning to retrain and work full time. Miracles can happen :)

w8in4dave Community Regular

Yea I cannot imagine working and not knowing you have Celiac!! Unless you have a private bathroom!! Maby bring in your laptop and phone so you can work from the Toidy :) lol 

Seriously tho I feel eating a nice healthy meal is very important if you are Celiac. You are not absorbing your vitamins and minerals!! You really need to eat healthier. Take vitamins and Minerals Eat fresh healthy foods!! It is important!! Your body cannot function properly if it doesn't get what it needs. I am almost 4 months into it!! I feel better for sure!! But I know I am still not up to par!! Makes me wonder how I was dealing with it all be for ... Just eat healthy!! 

  • 3 weeks later...
LisaRae28 Newbie

The lactose intolerance is usually from prolonged periods of time not digesting foods with lactose in it. Your body stops producing the enzyme. The lactose intolerance from celiacs is from the tips of the villi breaking off when the intestine is damaged. So you're both right but it is an indication of celiac if removing lactose doesn't fix the problem. I've read a little on it but I *try* to limit my "crazy time" on google n even sites like these to a reasonable window of time nowadays cuz if I already feel like crap confusing myself with too much information is just gonna make it worse so I may be wrong (or most likely only have part of the picture lol)

1desperateladysaved Proficient

I feel you need to pick at least 1 protein food and preferably more.  If you use meats you have not generally eaten before you shouldn't have built up intolerances to them.  I would add well cooked vegetables.  If you haven't tried Fennel bulb, there is one you don't have antibodies too.  If mango is new it would be a nice addition.  Don't forget some good varieties of fat such as olive oil, coconut oil, and butter if tolerated.  I would encourage you to consider rotational diet rather than limiting your diet so much.  Your body needs more than enough nutrients in order to heal.  Many of them won't be absorbed.  Are you on supplements?  Are you taking Digestive enzymes?

 

I recall some that were on a very limited diet that we haven't heard from in months.  Please try to keep as many foods as possible.

 

D


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



Celiac.com Sponsor (A8-M):



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. - Russ H replied to dsfraley's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      15

      9 y/o Son Diagnosed with Celiac Disease; Persistent Symptoms: Does this Sound Familiar?

    2. - Jane02 replied to HectorConvector's topic in Related Issues & Disorders
      314

      Terrible Neurological Symptoms

    3. - Jane02 replied to HectorConvector's topic in Related Issues & Disorders
      314

      Terrible Neurological Symptoms

    4. - knitty kitty replied to HectorConvector's topic in Related Issues & Disorders
      314

      Terrible Neurological Symptoms

    5. - trents commented on Amiah's blog entry in Amiah
      1

      Help!!

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

    • Total Members
      133,582
    • Most Online (within 30 mins)
      7,748

    Kim RS
    Newest Member
    Kim RS
    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

    • Russ H
      I used to react very badly to milk - much worse than to gluten and I was always worried about exposure. Any diary product would make me extremely ill and put me out of action for 5 days or so. I would have watery and bloody diarrhoea, bloating, malaise and be unable to eat. If I recall correctly, it was about a year after being diagnosed with coeliac disease and going on a strict gluten free diet that I accidentally consumed dairy products and didn't react. From then on, I have been fine with diary. 
    • Jane02
      Sorry, I just realized how old this thread is and only read the initial post from 2021. I'll have to catch up on the comments in this thread. 
    • Jane02
      Sorry to hear you're going through such a hard time. It would be worth looking into MCAS/histamine issues and also Long Covid. Perhaps there is something occurring in addition to celiac disease. It would be worth ruling out micronutrient deficiencies such as the b vitamins (B12, folate, B1, etc), vit D, and ferritin (iron stores). 
    • knitty kitty
      This sounds very similar to the neuropathic pain I experienced with type two diabetes.  Gloves and boots pattern of neuropathy is common with deficiencies in Cobalamine B12 (especially the pain in the big toe), Niacin B3, and Pyridoxine B6.  These are vitamins frequently found to be low in people with pre-diabetes and diabetes.  Remember that blood tests for vitamin levels is terribly inaccurate.  You can have vitamin deficiencies before there are any changes in blood levels.  You can have "normal" serum levels, but be deficient inside organs and tissues where the vitamins are actually utilized.  The blood is a transportation system, moving vitamins absorbed in the intestines to organs and tissues.  Just because there's trucks on the highway doesn't mean that the warehouses are full.  The body will drain organs and tissues of their stored vitamins and send them via the bloodstream to important organs like the brain and heart.  Meanwhile, the organs and tissues are depleted and function less well.   Eating a diet high in simple carbohydrates can spike blood sugar after meals.  Eating a diet high in carbohydrates consistently over time can cause worsening of symptoms.  Thiamine and other B vitamins like Niacin B3 and Pyridoxine B6, (which I noticed you are not supplementing), are needed to turn carbs, proteins and fats into energy for the body to use.  Alcohol consumption can lower blood sugar levels, and hence, alleviate the neuropathic pain.  Alcohol destroys many B vitamins, especially Pyridoxine, Thiamine and Niacin.  With alcohol consumption, blood glucose is turned into fat, stored in the liver or abdomen, then burned for fuel, thus lowering blood glucose levels.  With the cessation of alcohol and continued high carb diet, the blood glucose levels rise again over time, resulting in worsening neuropathy.   Heavy exercise can also further delete B vitamins.  Thiamine and Niacin work in balance with each other.  Sort of like a teeter-totter, thiamine is used to produce energy and Niacin is then used to reset the cycle for thiamine one used again to produce energy.  If there's no Niacin, then the energy production cycle can't reset.  Niacin is important in regulating electrolytes for nerve impulse conduction.  Electrolyte imbalance can cause neuropathic pain.   Talk to your doctors about testing for Type Two diabetes or pre-diabetes beyond an A1C test since alcohol consumption can lower A1C giving inaccurate results. Talk to your doctors about supplementing with ALL eight B vitamins, and correcting deficiencies in Pyridoxine, Niacin, and B12.  Hope this helps! Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ P. S.  Get checked for Vitamin C deficiency, aka Scurvy.  People with Diabetes and those who consume alcohol are often low in Vitamin C which can contribute to peripheral neuropathy.
    • Scott Adams
      I’m really sorry you’re dealing with this—chronic neuropathic or nociplastic pain can be incredibly frustrating, especially when testing shows no nerve damage. It’s important to clarify for readers that this type of central sensitization pain is not the same thing as ongoing gluten exposure, particularly when labs, biopsy, and nutritional status are normal. A stocking/glove pattern with normal nerve density points toward a pain-processing disorder rather than active celiac-related injury. Alcohol temporarily dampening symptoms likely reflects its central nervous system depressant effects, not treatment of an underlying gluten issue—and high-dose alcohol is dangerous and not a safe or sustainable strategy. Seeing a pain specialist is absolutely the right next step, and we encourage members to work closely with neurology and pain management rather than assuming hidden gluten exposure when objective testing does not support 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.