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Could I Be Anymore Pathetic


Firegirl43

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Firegirl43 Contributor

Thanks guys :)


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Melzo Rookie

Yes....you could be more pathetic....you could be me!!!!

I am not past the crying over food yet. If I cry it is actually a good thing because I have actually been more "violent" than emotional. My husband has had to duck flying spatulas and bags of cheese! So I would say to you....it is very normal. My husband will be eating a bread roll and I will just start crying. I try to think further ahead by telling myself how much it would hurt my tummy! That usually works-at least for me.

I hope that both of us will get past this point sometime soon!! Good luck on your end!

Melanie

elonwy Enthusiast

I found that one of the most profound gluten symptoms I had was uncontrollable rage for no reason, and that once the gluten free diet kicked in after a couple months, I don't have that anymore.

It was the wierdest thing. I would get spitting mad at the stupidest little thing, to the point of kicking the wall or whatever, and I would also be soo irritable, to the point that my boyfriend was constantly ducking ( I wasn't violent, but he never knew how I would react verbally).

Now I only get that occasionally, when theres been an accedental gluten exposure.

The personality changing aspect is scary.

Elonwy

hlm34 Apprentice

if you have a trader joe's near you - they have the enjoy life brown rice bread in their regular bread aisle. it sells for $3.50. the same enjoy life bread sells at whole foods in their freezer section for $4.99. I personally like this bread. it took a couple of days to get used to. but i have two slices toasted with butter everyday for breakfast. i was diagnosed in October as well and have had all the same feelings and emotions as you describe. It does get better. I am not going to tell you that it is easy - because i still do not think it is easy - but it does get better.

DingoGirl Enthusiast

Trader Joe's saved my life! There are so many things to eat there, many things I was already eating. I got the bread....yes, it will take some getting used to. The Prairie Bread at Whole Foods is ridiculously expensive at $8.29 a loaf, but I do like it better (toasted with butter and jam!) so will splurge occasionally.

This site has helped me so much in just four days. I cried for two and a half days, then decided it was time to stop feeling sorry for myself and then headed to Trader Joe's where life seemed possible again.....have gained so much information already and learning more all the time. The support here is wonderful. Thanks guys....

Susan

TCA Contributor

I'm from the South and would sometimes give my right arm for a gravy and biscuit......

But I wanted to let you know that my mom recently ate at Olive Garden in Birmingham, AL and they had a gluten-free menu!!!!!! Maybe this will help those food woes!

Now, if anyone has found a good recipe for biscuits PLEASE LET ME KNOW!!!! My son has been gluten-free for 4 weeks and has asked every morning for a butter and Jelly biscuit. My pittiful fill-ins are not a hit. Help!

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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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