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Variable Overwhelm Encouragment Wanted :)


funDiva

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funDiva Newbie

Hi I'm Christy, long time lurker, first time poster.

 

I've been gluten-free since Aug 2012, self-diagnosed NCGI, sorta doing OK, I also have Fructose Malabsorption and don't do well with dairy, likely casein moreso than lactose.  So I'm currently gluten-free DF and have to weigh the limited foods I can eat to stay under my daily 3g free fructose limit, as well as the fructans, polyols and other FODMAPs that disagree with me.  I figured out the FructMal in April 2010 so I was mostly wheat-free since then.  FructMal is cummulative rather than all or nothing, so it took a long time for me to overcome the gluten denial, thou I had good improvement just from the FructMal adjustments.  There was so much detail I had no idea of, so I'm beating myself up for not knowing what I didn't know - silliness!

 

I'm just tired, not so much physically but emotionally.  If I look back at how awful I used to feel all the time and compare that to feeling awful now maybe once every week or two, I've made huge improvement.  But it's mentally exhausting.

 

There was gluten in stuff I missed for the longest time, like the Bonnie Bell lip blam I used DAILY.  At that realization, I got focused on double checking everything again.  My frozen green beans said "may contain wheat" so out they went.  Uncertain origin of vitamin E in lotion? Bye bye

 

Almost all my kitchen stuff I've replaced, or I make a best effort to make it safer. like my marble mortar & pestle is possibly glutened, so I use the pestle only to crush things in plastic baggies.  I haven't replaced my VitaMix container purely out of cost (they're $130), I scrubbed it & soaked in vinegar and since we use it at least 2x a day, I'm hoping that the fact that it's been washed 600 times since last possible minor gluten (cc oats) is enough.

 

Luckily, I gave my husband Wheat Belly to read and he decided on his own to go gluten free also shortly after I did, so that makes it much simpler.  My darling kitteh was already gluten free :meow: [said cute kitteh pictured in avatar]

 

So there are things I still need to do, like scrub down my cabinets and replace the shelf liner, I'm getting to them a shelf at a time, I greatly dislike the cheap plastic cutting board I now use, I need a bigger sifter, etc.  Most of the stuff left to do is just a time and money situation, so I'm making progress and yet it's frustrating.  I think I have a shread of lingering doubt without a firm diagnosis that it's a huge amount of effort when I'm uncertain.  I considered EnteroLabs or Cyrex, but would rather buy a new VitaMix 7500 for the same cost as the tests.

 

Sigh.  I do want to thank the community in general for all the support and answers I've gleaned over the past couple years, I'm finally posting cuz I'm certain I will benefit from interactive support instead of just lurking.  Plus I'm here if anyone wanted to know that a gluten-free DF Caramel Corn rice cake contains 0.056 mg Fructans - I enjoy FructMal nutrient math.

 

Thanks for listening

 

 


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nvsmom Community Regular

Welcome to the board.  :) I hope you keep feeling better. The menatal absorption starts to go away with time. i know that celiac disease was all I thought about at first. It gets easier.  :)

 

I have a new Vitamix too. I LOVE that thing. I can make veggie/fruit smoothies that my second son (pickiest eater in the world- I swear he only eats beige food) will eat and enjoy.  Yeah!

GottaSki Mentor

Welcome Christy...you are in the right place.....we all have gone thru it...some very lucky souls transition quickly ... some not so quickly. Good news is it will get better..hang out...ask questions or just join in the small talk :)

I had one son that I used the smoothie trick on for years....he had no idea his yummy smoothie was loaded with veggies ... blueberries are great for making it purple ;)

1desperateladysaved Proficient

Nice to hear from you!

I really feel like a mental battle is overtaking me as the physical battle seems to be subsiding.

D

IrishHeart Veteran

Hi Christy!

It can be very overwhelming at first, but you sound as if you are figuring it all out very quickly.

We can be your cheerleaders!

 

As for the tests vs.kitchen appliance dilemma,  I would most definitely spend the money on the VitaMix (although I suspect 600 washings in vinegar did the trick :) )

New kitchen appliances are probably more useful to you than any of those online tests, IMHO

Plus, who doesn't like a new kitchen toy?

 

Veggie Smoothies rock.

 

Hang in there!

funDiva Newbie
Thanks for the warm welcomes and empathy lovely ladies.  My disjointed rambling amuses me, impressive that you were able to decipher anything out of it!

Could I have chosen a more cryptic title?  teehee  I sometimes work myself into a tizzy over details or oversights, which is what I meant by variable, maybe I should have said occasional overwhelm.

FructMal eliminates smoothies for me : pout : luckily I use my VitaMix for soup, "cheeze", "pudding" and I make my own arsenic rice milk : grin :
 
Wow, I just checked, I posted my recipes so long ago on my blog, I never updated them to the gluten-free versions.  I refer to my recipes as "reasonably palatable" to me they are terrific, but to a person without intolerances they are bland or weird.  Funny thing, I greatly dislike having to cook or even prepare food, yet this has forced me to have to adapt and get creative.
 
I do truly appreciate you all responding so quickly and enthusiastically, and in trying to reply, I am having this flood of stuff I want to share and I think it would be better if I used the blog feature here for that, I just didn't want to leave yall hanging while I write a novel of my gut history : winkiegrin :
 
[sidenote: For reference, I am a professional goofball, which does not always come across in text, and I have a habit of overusing emoticons to relay that hence I adopted DIY style : likethis : so don't worry that the forum software is having a glitch.]
IrishHeart Veteran

I confess...I did wonder about the title and thought maybe you got "spell-checked" ...

 

then figured...well, I am pretty sure I know what she means. :D  


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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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