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


Renegade

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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!


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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


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    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
    • marion wheaton
      Wondering if anyone knows whether Lindt chocolate balls are gluten free. The Lindt Canadian website says yes but the Lindt USA website says no. The information is a bit confusing.
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