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I'm So Happy!


Poppi

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Poppi Enthusiast

I don't know if this belongs in "Coping With" but there is no "Celebrating" section so I'm putting this here.

2 1/2 months ago I could not walk my youngest son to school. 6 blocks was too far for me. My arthritis was crippling, I had no energy, every part of my body hurt. SIX BLOCKS was beyond me. I was terrified at the thought of living another 60 years in this body becoming more and more crippled.

Today I completed my intro level sea kayak certification. 6 hours in a kayak paddling against wind in ocean swell. Wet exits, eskimo rescues, using my upper body strength the lift and turn kayaks in the water and climb in and out of the boats. It was exhausting but I am so proud of myself. I was the only woman in the course and the other 3 participants were military men in great shape (my husband and 2 coworkers). I kept up with them all day and did everything that they did. Occasionally it took a couple of tries but I did it.

The 2 coworkers and the instructors were horrified at lunch when I was telling them what I can't have because of celiac but it didn't phase me at all. Go ahead and eat your sandwich, drink your beer ... being gluten free has given me a life I always envied in others.

I'm so happy right now. Exhausted and sore but happy.


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bigbird16 Apprentice

How awesome, Sara!!!! Congratulations!!!!!!:D

kareng Grand Master

Super Woman!

psawyer Proficient

Awesome!

glutenfreegirl Enthusiast

I am so proud for you....you give me hope and inspiration.....please share all of your success stories that are to come....I look forward to hearing the next one.....

Harpgirl Explorer

Awesome job! Kayaking is not easy! Keep it up! :D

Lisa Mentor

Very Cool! You are an inspiration for all women, challenged with health issues or not! And, I'm sure, an inspiration to those looking for the light at the end of tunnel. :D


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Greenling Newbie

Wow, that's really cool. Congratulations on the certification! And how amazing to feel soooo much better in such a short time. :)

IrishHeart Veteran

WHOOHOO! You go, girl!! Major kudos!! :)

Poppi Enthusiast

Thank you so much. Every part of my body hurts right now but it was worth it. We're looking at doing our level 1 skills certification in August and that is two 8 hour days in a row.

Newtoitall Enthusiast

wow that's exactly what I want!

congrats!

lol beer+fitness = lolol

teach them how to be healthier =D

lizard00 Enthusiast

This makes me so happy! Congrats! :D

wheeleezdryver Community Regular

That is totally AWESOME!!!!!! You go, girl!!!! B):D

11475 Apprentice

Congratulations - that's amazing and you should be so proud. Great for us all (members new AND old to the boards) to read about such successes! Really happy for you :)

YoloGx Rookie

Amazing! You are indeed an inspiration.

Good luck in August, I am sure you will do well!

love2travel Mentor

Wow - good for you! I'm glad you went ahead with it and did not allow your pain, etc. to control you. You have taken such a big step and now I bet you feel as though you could do anything. It is thrilling that you were able to do this so early into your gluten-free lifestyle after such horrible crippling! Amazing. :D

Poppi Enthusiast

Thanks again everyone. I feel so blessed to have recovered so quickly. I read about so many of you who are still dealing with crippling health problems even after years of being gluten free and my heart breaks. My life isn't all sunshine and roses yet, and I'll never get the cartilage back in my feet so there are high impact things I probably will never be able to do but I'm so happy to be on my way.

I am thinking that we will push the level 1 course back to October or even next year. I had the most intense and painful muscle spasms/burning pain in my neck, arms and hands last night. Everything from the base of my skull to the tips of my fingers was on fire. It was awful. The only time I can remember being in that much pain was when I was in the hospital with meningitis last summer and after 14 days on constant high doses of dilaudid a doctor decided I was a drug addict and cut me off the drugs cold turkey and sent me home. Withdrawing from that was the worst 3 days of my life and the pain last night was very similar. I have a lot of work to do on my stamina and fitness before I'll be ready to do two days of hard paddling. I'm happy to have a goal though and I look forward to achieving it.

Thanks so much for your kind words and support, I means a lot coming from people who understand how deep people like us have to dig to do things that feel normal to most.

IrishHeart Veteran

I am thinking that we will push the level 1 course back to October or even next year. I had the most intense and painful muscle spasms/burning pain in my neck, arms and hands last night. Everything from the base of my skull to the tips of my fingers was on fire. It was awful.

Thanks so much for your kind words and support, I means a lot coming from people who understand how deep people like us have to dig to do things that feel normal to most.

Your courage and determination is inspirational!! I am just so happy for you!!!

Sara, this "burning fire" you describe??--is exactly what I live with --right up through my skull, too--down my arms, spine, pelvis, hips, legs and feet..and it IS awful, isn't it. arrgh! :blink: HOWEVER!! The good news is... you can use your muscles & joints now that you are healing your gut (as they should be used) and you will recover from your heavy workout!! Baby yourself for a few days. It will subside. Use ICE at first, then heat. The inflammation will die down. If you can tolerate them, OTC (gluten free, of course) NSAIDs will help. ( I can't do those myself)

You DID IT and that is so amazing!!! :)

By sharing your success, you gave me a shot of renewed hope and "push" and I'll continue my grueling daily physical therapy exercises to regain lost muscle mass with your accomplishment in mind!!

Thank you, honey! :)

You're one brave kiddo!! ;)

Lori2 Contributor

I am thinking that we will push the level 1 course back to October or even next year. I had the most intense and painful muscle spasms/burning pain in my neck, arms and hands last night. Everything from the base of my skull to the tips of my fingers was on fire. It was awful.

My son does long-distance bike riding. He has found that additional magnesium has eliminated all his muscle soreness and cramps. There is magnesium available that is manufactured to be almost 100% absorbable so that is doesn't cause diarrhea. I use it for the leg cramps I get at night. This might help you.

IrishHeart Veteran

My son does long-distance bike riding. He has found that additional magnesium has eliminated all his muscle soreness and cramps. There is magnesium available that is manufactured to be almost 100% absorbable so that is doesn't cause diarrhea. I use it for the leg cramps I get at night. This might help you.

That's great!! Would you mind sharing the brand name, please!?? The big D is a common complaint for many on here after taking Mag. supps. :unsure:

love2travel Mentor

That's great!! Would you mind sharing the brand name, please!?? The big D is a common complaint for many on here after taking Mag. supps. :unsure:

Sorry to jump in here but my chronic pain management surgeon highly recommends magnesium glycinate. He said nearly all magnesium available is only absorbed about 20-30% EXCEPT for mag glycinate which absorbs 85-90%. He also recommends that those with chronic pain need to gradually take up to 900-1800 mg per day (at night time)!! I am currently at 750 mg and soon will be at 900 mg. I do notice a definite decrease in leg cramping and spasms, especially at night so am getting up less often to walk around at night - am guessing it is due to either the magnesium, other supplements I am on, and/or being gluten-free for four months.

IrishHeart Veteran

Sorry to jump in here but my chronic pain management surgeon highly recommends magnesium glycinate. He said nearly all magnesium available is only absorbed about 20-30% EXCEPT for mag glycinate which absorbs 85-90%. He also recommends that those with chronic pain need to gradually take up to 900-1800 mg per day (at night time)!! I am currently at 750 mg and soon will be at 900 mg. I do notice a definite decrease in leg cramping and spasms, especially at night so am getting up less often to walk around at night - am guessing it is due to either the magnesium, other supplements I am on, and/or being gluten-free for four months.

That's great news!! I use the glycinate form myself-- but have been reluctant to "up it" too quickly as I do not wish to see if the D will reappear :lol: ...maybe it's time for me to "boost" it :)

How soon did you notice a reduction in the muscle spams?? a few months? Thanks!!

love2travel Mentor

That's great news!! I use the glycinate form myself-- but have been reluctant to "up it" too quickly as I do not wish to see if the D will reappear :lol: ...maybe it's time for me to "boost" it :)

How soon did you notice a reduction in the muscle spams?? a few months? Thanks!!

Just in the past week or so. I realized I wasn't complaining about my pain as much. At first I thought it was my attitude (hee hee) but then I realized it was physiological as well. I thought it was a teeny tiny difference so was wondering if I was imagining things but then it hit me the other day. My calves are spasming a lot less. My back/hips/shoulders/myofascial pain still sucks but I am sure that will gradually improve over time. Even if it improved 30% - seriously. That would even help! I, too, have been increasing my magnesium super gradually. Irish, I really hope it works for you very soon! :)

YoloGx Rookie

Another related thing that helps me sleep better at night and have less spasoming is to take a hot bath with a couple of handfuls of epsom salts in it. Given I now have out and out salicylic acid sensitivity, for some reason I can't use as much epsom salts as I used to, but boy is it effective for helping me detox now as well as smoothing out my nerves and muscles.

IrishHeart Veteran

Just in the past week or so. I realized I wasn't complaining about my pain as much. At first I thought it was my attitude (hee hee) but then I realized it was physiological as well. I thought it was a teeny tiny difference so was wondering if I was imagining things but then it hit me the other day. My calves are spasming a lot less. My back/hips/shoulders/myofascial pain still sucks but I am sure that will gradually improve over time. Even if it improved 30% - seriously. That would even help! I, too, have been increasing my magnesium super gradually. Irish, I really hope it works for you very soon! :)

I'm with you--any reduction in pain is a good thing! ;) Thanks for posting!!

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    • marion wheaton
      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
      @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 
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