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Am I Getting Worse Because I'm Reading Too Much?


GlutenFreeNewB

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GlutenFreeNewB Rookie

I'm pretty new to gluten free. I stopped eating gluten about 3 weeks ago and started to feel better. I've been reading everything I can get my hands on. Now I seem to have more symptoms than I did before. I think I got glutened at a restaurant this weekend and the symptoms I've been able to live with for many, many years are now making me feel worse than ever! It seems like the more I know, the worse I feel...beginning to wonder if it's all in my head :-(


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Marilyn R Community Regular

So you're thinking the more knowlegable you become, the more stupid you get : ;) That isn't logical...but there is a period of time that I experienced, manbe you won't, where your autoimmune system is really pissed off because you removed their favorite warrior (gluten) and started eating gluten-free. For me, my internal warriors hated the quinoa, soy, corn and dairy proteins. That doesn't necessarily mean your own experience will be similar.

Korwyn Explorer

Hi gluten-free,

This is not at all uncommon (I'm sorry). Very often people become more sensitive once they go gluten-free for even a short time. It isn't in your head. This happened to me as well as many others here.

mushroom Proficient

Yes, once your body has learned what it is like to be gluten free, the warriors attack with renewed vigor. Sorry :( But it is a good reminder to keep away from the stuff. :)

sandsurfgirl Collaborator

Your body is healing and it will go through withdrawal. There is an article somewhere about gluten withdrawal being equivalent to opiate withdrawal. Withdrawal and the healing phase are very real.

Use the search function and read old threads about withdrawal so you can know that it's normal, it will pass and you aren't going crazy.

At the 3 week mark, my body rebelled and every single thing I ate made me sick. I was freaking out but then I read about that happening to others and it usually goes away. About a week and a half later... it went away.

You need to be on a very clean diet for now to promote healing. Most of us cut out dairy and soy for awhile because those are hard to digest with a damaged intestine. Sometimes fructose can be hard too so maybe eat less fruit. Some people have to cut potatoes and tomatoes too. But it comes back as you heal!!!

Eat lean meats, nuts if you aren't allergic, veggies, fruits, rice. Keep it simple for just a little while and you will be happy you gave your body that chance.

pricklypear1971 Community Regular

Yeah - it can make you feel nuts.

I never thought one thing could do so many weird things to my body...

Yes, you're reading a lot. Yes, you may flip a bit. But you aren't nuts...and you will get through this.

I thought sinus pressure was normal. I thought dry skin was normal. I thought C was normal. Guess what, it ISN'T!

I've only given up ONE THING. GLUTEN.

And from removing ONE THING, so much has changed. I learn something new about myself every day. Seriously.

Some days I feel like a walking science experiment.

WhenDee Rookie

This happens!

When I first took gluten out of my diet, the most minor exposure would send me to the bathroom for an entire day, plus I would have a migraine. This from a woman who spent sixteen years with constipation and bowel obstructions!

I've been gluten-free for about a year now (it flew by!) and now it isn't nearly so bad. Getting glutened makes me miserable, but it isn't debilitating like before.

A friend of mine IRL is still debilitated by it, but I think she is much worse than me. Everyone is different. As your body heals, it will continue to change. I hope that you are like me, and your body will settle down and just complain a little bit when you get glutened.

What I do know is that the cleaner your diet is, the easier it is for your body to heal. Don't go overboard with gluten replacements, which are mainly rice, tapioca, bean flour, potato flour, etc. Very low in nutrition. Your body has been depleted for a long time. Focus on lots of fruit & veg, replacing those depleted vitamins & minerals. You'll heal faster & better. Plus you'll be focusing on the positive rather than thinking about how BAD most of the gluten-free replacements are! LOL


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sandsurfgirl Collaborator

I had some really weird things happen when I went gluten free. I had improvements all the time but it was six months before I felt really good.

I got dehydrated easily and had to drink Gatorade daily in order to not feel dizzy and shaky. For some reason natural electrolyte replacements gave me horrible D. Go figure. Plain old Gatorade did the trick.

Lots of people will poop like 10 or 15 times per day at first. that was a weird one.

I can't drink most sodas anymore. Once I went gluten free Coke, Pepsi, and things like Sprite taste like soap water to me. It literally does not taste like Coke. I tried Sprite again recently to see if that changed and nope. Soap water. Natural root beer like Hansens tastes good to me. I was never a big soda person anyways, but now I almost never drink it.

I had a pain in my right side for years and years. They did all these tests on my gallbladder but it was fine. I never had a colonoscopy though. One night about a month into the diet I had this weird pulsing in that area and it started spasming. I felt like a little pop and then had to run to the bathroom. This stuff like tar came out and I think it was impacted for years!!! I had a small panic attack too and then when it was out of me the anxiety went away. Now that is crazy!!!

GlutenFreeNewB Rookie

Thanks to all of you. It's just strange that I was able to live with this for years and not even know it, and now I'm just such a mess. I've always eaten very healthy food, very little processed food, so I'm not tempted at all by the gluten free processed stuff. I will stay positive and keep plugging away knowing it will get better!

lovegrov Collaborator

It is possible that you're now more sensitive and it's also possible you're having some withdrawal -- neither of which ever happened to me -- but it's also possible you're just driving yourself temporarily crazy worrying about everything -- which DID happen to me.

richard

Korwyn Explorer
I've always eaten very healthy food, very little processed food, so I'm not tempted at all by the gluten free processed stuff.

My wife and I ate pretty health as well (compared to the average western/American diet). Lots of whole grains, lots of veggies, salads, lean meats, low fat, etc. I kept getting sicker, and fatter. Now I eat mostly protein and fats and I'm physically doing better than I've ever been in my adult life. My body really doesn't like carbs much at all. The more refined the worse it is. :blink:

Chad Sines Rising Star

It helped me to realize that my system was all screwed up and had no clue what it wanted. I can have issues with eggs one day and the next be okay, same with corn and many other triggers. It does seem that it gets a lot better quickly then a lot worse and then I guess stabilizes over time.

sandsurfgirl Collaborator

It helped me to realize that my system was all screwed up and had no clue what it wanted. I can have issues with eggs one day and the next be okay, same with corn and many other triggers. It does seem that it gets a lot better quickly then a lot worse and then I guess stabilizes over time.

For most of us it totally stabilizes over time. My new GI who actually knows about celiac and even particulars (a rare find) said that soy may not come back for me since it's still a problem all this time, but soy isn't that big of a deal for me to eat anyway. I'm glad I can eat dairy after years of it being a problem.

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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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