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This Is So Sad

jasonD2

By jasonD2
in Coping with Celiac Disease

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jasonD2 Experienced
jasonD2
Posted

Im connecting with old friends and looking at a lot of old pictures from way back before I developed all my digestive ailments and its depressing me because I used to be so healthy and could eat anything. Now I feel like damaged goods and just dont enjoy things the way I used to and never will again. I still to this day believe everything couldve been prevented if i took appropriate steps to reduce my stress and circumvented the events that destroyed my insides. how can i get past this and get on with my life? why do i always look back?

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CeliacMom2008 Enthusiast
CeliacMom2008
Posted

Jason, I don't know your circumstances, so I don't know about your health, but you can have a good life. Life is what we make it. Seeing how my son has adapted over the last year has been such an inspiration to me on so many aspects of life. Your life may never be exactly the same as it was, but that doesn't mean it has to be worse. By eating healthy you can regain some if not all of your body's strength and health. It's just food after all.

We all have "something" that keeps us from being what we perceive as "normal". I truly believe in accepting what ever "something" you have, learning to live with it, and then learning to love the life you have.

What is your favorite thing in the world to do?? What is your second? How about your third? Can you do at least one of them still? What is your favorite thing about yourself? Try to focus on these and be thankful for them. Try every day to be thankful for at least one thing. Try to find one "good" thing in every day. Some days it may be bigger than others, but at least if you're thinking about it you'll be thinking more positive thoughts. And if you think you don't have any "good news" for today or don't have anything to be thankful for, you're not looking hard enough!

And keep coming here. Find out what bothers you most about being a Celiac and see what others do to get around that. You're not alone!!

cattriona Newbie
cattriona
Posted

The thing that has helped me to cope with celiacs is this fact that I keep telling myself: even though you may not feel well, eating a gluten-free diet forces you to be healthy. Yeh, boring I know, but think of all the other health problems that you may be avoiding in the future. and eating gluten-free is all about substitution. the diet i have now is hardly different to the one i used to eat except for different ingredients. also, like Celiac Mom says, I don't know what your situation is but sometimes there are stresses in life that we can't avoid too much and if we could have now you've learnt. Be happy with the fact that you now know what is wrong with you and that you have a solution to your problem. many people will never know what's wrong with their health and the good thing about being celiac is that there's no nasty medications or treatments that we have to undergo in order to get better and survive.

YoloGx Rookie
YoloGx
Posted

In time you will more than likely feel better and better. If not, you may have other food sensitivities as well that you need to track down.

Meanwhile things like marshmallow root and slippery elm should help heal your digestive tract. And enzymes like bromelain/papain and pancreatin will help you digest your food more easily. Taking enterically coated acidophilus seems to be de riguer (sp?).

I know that for myself I overall feel better and actually am healthier than I ever have been. My only real limitation is socially dealing say with a new boyfriend. But I can get past that if its the right guy. Plus some family issues where some of my family is in deep denial. This condition helps eliminate the superficial people as well as those who really don't care. Travel is a little challenging, however do-able generally speaking by planning ahead. Otherwise its no problem usually since I just bring my own food.

Mainly have faith and patience. You will get better!

Bea

gabby Enthusiast
gabby
Posted

Hi,

Sorry that you are going through this. I personally was helped with a similar situation via a book that was recommended to me a few years ago. You should be able to find it in the library...or order it online somewhere. It isn't about celiac disease, instead it is about dealing with regrets from the past. I urge you to get your hands on this book, and read it through a few times. It helped me a lot, and I hope you'll find it helpful too!

The book is called:

"Woulda, Coulda, Shoulda: Overcoming Regrets, Mistakes, and Missed Opportunities", by Arthur Freeman

Hope that helps!

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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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