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Got Glutened-Need Help


gluten-is-kryptonite

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gluten-is-kryptonite Apprentice

Hi everyone

I was diagnosed with Celiac disease 4 months ago. This is my first post here. It took about a year to get an accurate diagnosis and it has been life changing to say the least. I have never felt better in my whole life. However a few days ago I decided since I had been doing so well (VERY strict gluten free and dairy free diet)- wnet a full month with no symptoms- that it would ok to have french fries at a local restaurant. I figured that that since they are only potatoes with no breading it should be fine. I didn't think I would react to the cross contamination of the oil in the deep fryer that is shared with all sorts of gluten laden items.

I knew immediately I was glutened when we got home- headed right to the toilet for the big D word. Then the next few days all my symptoms have returned. Leaky gut type symptoms after eating and just in general. Incredible flu like fatigue and sleepiness, whole body muscle fatigue, brain fog, bad mood, no energy to exercise etc, not to mention a constant low grade stomach ache. I have not been able to get any work done this week and have left work early to sleep. Been sleeping a ton.

What do people do to speed up the clearing of gluten? I can't take this fatigue. Is there a supplement you take? I am on glutamine, probiotics and pancreatic enzymes. Really feeling desperate and just want to feel good again.


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shadowicewolf Proficient

Water, water, water, and water. There is no real way to speed it up.

kittty Contributor

A co-worker said that chia seeds can help clear up the GI issues after a glutening, but I haven't tried it out yet.

GottaSki Mentor

Welcome! Love your screen name - my kids have called gluten "mom's kryptonite" since I was newly diagnosed - about the time I had my first experience with CC at a restaurant.

Sorry you are feeling poorly - there really is no way to speed it along besides what you are doing already - ginger root can sooth the stomach issues and lots of water is always a good choice - I've never found anything to help with the flu like symptoms.

Oh - limit the gluten-free processed foods as they can be hard on an upset system. Homemade chicken/vegie soup is our favorite healing food around here.

cyberprof Enthusiast

Sorry about the glutening...happens to us all I think.

I drink lots of hot peppermint tea, which really helps. Water is important, because a lot of water is lost with Big D, so tea is a good way to get water. The tea is soothing and mint is an herbal remedy for bad stomachs from way back in medieval times. The only thing is that I've heard if you have heartburn, mint makes it worse.

Also, after the initial Big D, I take a couple doses of Pepto-bismal. It soothes my stomach and makes the episode last a shorter time, or at least that's my experience, and was originally recommended to me by long-time member Ravenwoodglass.

Some people like ginger tea (I don't like ginger) but that is another old fashioned remedy. If you're on the go, you could drink ginger ale.

ravenwoodglass Mentor

While there are things that can help the symptoms, as others have mentioned, I don't think there is any way to speed those antibodies away. I'm so sorry you are feeling so bad right now, it will pass but the time it takes to pass varies. I find Cream of Buckwheat cereal to be soothing to my tummy and the Pepto Bismal liquid helps my stomach pain. For me it doesn't help with the D but then I want everything out asap anyway. However if you do need to leave home and have D immodium can be quite effective at stopping it.

Rest as much as you can and hopefully you will be feeling better before too long. Don't beat yourself up over your mistake. We all have made them. Even some of us who have been gluten free for years sometimes slip up. I did myself a couple of weeks ago and am just now starting to feel like myself again.

kristenloeh Community Regular

No matter what you do, the gluten will be in your system for a couple of weeks. All you can do is help ease the symptoms. A lot of rest and a lot of fluids. I take the vitamin supplement Celiact, so even when I do get glutened somehow, my symptoms aren't NEARLY as bad as they were before hand. Feel better and be careful!


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luvrdeo Apprentice

I got glutened a little over a week ago...I reacted instantly. I keep reading "rest and fluids"...my question is, I work typically a 10 hour day (which I hate), and the last few nights I've had things going on after work. By the time I get home I'm exhausted (been gluten-free for almost a month now). Today, I feel HORRIBLE...massive headache, extreme fatigue, just bad all around. Does this all go back to the glutening, or am I still adjusting to going gluten free? My family is worried because I've been in such horrible shape since going off gluten...

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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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