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Joint Pain

I'm more celiac than you

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jknnej Collaborator
jknnej
Posted

OK this will sound weird but since going gluten-free two weeks ago my tummy feels great but my head is foggy, tremors in hands, light headedness, joint pain.

Why are all of these symptoms coming when I eliminate gluten? So confused...any ideas?

By the way, I also have an abundance of yeast...what do you eat on a yeast free diet? I'm assuming no sugar/no bread but that is very hard.

Also, what is casein in? That's a new term for me.

Jennifer

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llj012564 Newbie
llj012564
Posted

Hey jennifer casein is dairy ;) ..... I have to follow a gluten-free C/F diet also no egg no soy amoung others if you are looking for a calcium sup go to www.GFCFDiet.com its a website for kids that have to follow both diets but they have lots of great vitamines. :) Lora

jknnej Collaborator
jknnej
Posted

Ok, so what on earth is left to eat if you cut out gluten, casein, soy, eggs??? Veggies and meat? I could NOT live on only that. I'd rather just get sick.

plantime Contributor
plantime
Posted

Since you have been glutenfree for two weeks, your body might be in detox stage. The symptoms you are having could very well be your body finally eliminating the gluten from your system, and trying to adjust to not having to fight it any more. If you truly prefer being sick over not eating the foods that make you sick, then have at it. It's your body, do as you please with it, just don't complain to me about being sick. Of course, if you are like me and are just blowing off steam and frustration over the severe restrictions of the diet, then I really sympathize. It is very hard to do, and sometimes I wonder if death would just be a better option. I feel that this is a normal feeling, and I must work through it, and stop looking at the negative side. Instead of thinking of all the foods I cannot have, I focus on the foods I can have. I ate a very delicious fruit cup at Wendy's today, and did not worry one whit about gluten. There are positives, you just have to look for them.

Guest Leidenschaft
Guest Leidenschaft
Posted

:blink: All I can say is WOW!!! I almost feel guilty with the few symptoms I have! Can anyone tell me if there is a relavance to the amount/severity of symptoms and the severity of damage to the intestines?? I guess what I'm trying to get at... if I'm not feeling as sick as some from any contamination with gluten, am I also not having as much damage done to my intestines?

Basically I know I've been "glutinated" when I rush to the bathroom first thing in the AM. Diarhea... I know I've been REALLY "glutinated" when I go a second or maybe a third time.

I do have irritability often, however I can also blame that on PMS, stress of owning my own business, working 16 hour days 7 days/week, financial burdens, etc....

I think I'm most frustrated by the pain in my left shoulder, however I've also been told this is tendonitis/bursitis/frozen shoulder... My job is very physical and it seems like I'm always getting hurt, hands, neck, shoulders, back. I also have a VERY hard time sticking to a vitamin regime due to very irregular meal times. Next month I get blood work done to see what my vitamin levels are at... I'm hoping my body is starting to absorb more nutrition from my food and I won't have to take so many pills everyday. It's been almost 13 months gluten-free, and for the past two months I've let me vitamins slide completely... I tell myself it's to be ready for the bloodwork, however it's more a lack of ability to get them in my face daily! <_<

I really appreciate this board, I've been gluten-free for a year and in denial for 15 years, I don't know what took me so long to learn more about the people who suffer from this bizarre disease! I can't believe the variety of symptoms, no wonder it's so misdiagnosed! :o

Looking forward to learning more from the REAL experts! :D

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    • marion wheaton
      Are Lindt chocolate balls gluten free?

      By marion wheaton · Posted

      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      Are Lindt chocolate balls gluten free?

      By trents · Posted

      @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
      Are Lindt chocolate balls gluten free?

      By BlessedinBoston · Posted

      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
      My only proof

      By knitty kitty · Posted

      @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
      My only proof

      By Jmartes71 · Posted

      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 
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