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Feeling Really Demoralized


BabsV

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BabsV Enthusiast

I'm just having a couple really rough days...tried some chicken on Saturday night from supposedly one of the best butchers in town and had a major reaction to it. Plain old chicken breasts that I baked and I've paid for it with insomnia, anxiety and extreme pain plus the fun shakey feeling I get in my limbs. Strangely enough no GI symptoms this time around.

Anyway, I am just so very worn out trying to find things to eat here. I'm in Poland and I swear I'm starting to really wonder about the quality of the food. I had problems with meats from the supermarkets so I stopped eating them...stuck to plain frozen fish that was clearly marked for allergens (EU products) and seemed to do a bit better. I've had problems with rice. Plain old rice. One brand made me miserable and on the next trip to the store I realized that the same brandname sits on all the boxes of barley down the aisle...so I'm thinking possible cross contamination during packaging? Other rices don't seem to cause a problem. Tons of things aren't labelled at all or have vague labels and no way to contact the manufacturer. I'm trying to avoid a lot of the gluten-free replacement foods except for treats every once in a while...but I'm running out of things I feel I can eat. Plus there was a huge kerfluffle in the last couple of weeks because a food producer was found to have used industrial road salt in many products (nothing I ate but still?!?!?) Not to mention that availability is hit or miss -- there is something to be said for eating in season but I'd kill for a decent avocado right now since I seem to tolerate them well. I am sick of carrots and don't ever want to have to touch another turnip, parsnip or celery root!

I know a lot of this is residual from the glutening but honestly, sometimes I don't know how I'm going to get through the next four months until we can go home to America. I'm also really stressed out waiting for some meds to arrive in the mail -- one of my doctors wants to try something for the pain issues that will not subside (he thinks it might be some sort of nerve damage from previous abdominal surgery that took place about a year before my Celiac diagnosis because nothing is working and they cannot figure out what could be causing the problem -- lots of tests, no results.) He had to order the medicines from a pharmacy in the US since they don't have them here in Poland (I swear, I've had better health care in 3rd world countries...this place is the pits.) ARGH!! I just want to feel better and I was...spent 5 days in Rome a couple of weeks ago and by the time we left I was feeling the best I'd been feeling in almost a year. Then we come back to Poland and within a week and a half I'm miserable again. Maybe I'm allergic to the place?!?!

I just had to vent so I can try to get back to thinking positively. My 6 month blood tests show a big drop in my antibody levels so the diet is working. Plus a lot of the other health issues I had seem to have either improved or gone away. I have so much more energy and can do so much more than I could last July plus I've managed to put some weight back on but still, the pain is really well, a pain to deal with every stinking day.

I'm stop whining now...


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josh052980 Enthusiast

I'm just having a couple really rough days...tried some chicken on Saturday night from supposedly one of the best butchers in town and had a major reaction to it. Plain old chicken breasts that I baked and I've paid for it with insomnia, anxiety and extreme pain plus the fun shakey feeling I get in my limbs. Strangely enough no GI symptoms this time around.

Sometimes chicken breasts are injected with chicken broth to "enhance" the flavor, and as a result, fresh chicken turns out to not be gluten free. I ran into this as well and it was infuriated. It sucks having to worry about EVERYTHING you eat, without having to worry about fresh poultry to top it off. I use Tyson brand stuff if I need some fresh chicken breasts and haven't had any issues.

Hang in there and feel better!

Takala Enthusiast

Can you mail- order safe food from other places in the EU or the USA ? How about some canned chicken or tuna ?

Skylark Collaborator

Sounds awful. Whine away! I agree with Takala. You need to treat yourself to a mail-order goodie box from somewhere in the EU.

I turned up this thread on gluten-free resources in Poland. Maybe it will help?

YoloGx Rookie

Until you can find safer sources of food, I'd stick with squash and root veggies for carbs for now. I ate that way for 10 months on the SCD diet. Though not to be able to trust the chicken either--that sucks!

Any way you can go to some local chicken farm to get your chickens direct??

BabsV Enthusiast

Thanks for the responses. I'm feeling a bit better today...recovering from the glutening so the pain has decreased a bit plus the venting helped! :rolleyes: It was extra hard this time around since we'd just had such a successful trip to Italy -- I ate chicken, pork and beef there and had NO PROBLEMS! Ah, the joys of Western Europe!

I do have some canned tuna and chicken (gluten-free) from the US but I'm getting tired of eating it. Also tired of salmon and tilapia but I'll go back to it for the time being. It is tedious making two different meals (one for me, one for the family) but honestly, I am not going to make them eat like I have to eat! Really ready to be back in the States where labels are much more user-friendly...

BabsV Enthusiast

Until you can find safer sources of food, I'd stick with squash and root veggies for carbs for now. I ate that way for 10 months on the SCD diet. Though not to be able to trust the chicken either--that sucks!

Any way you can go to some local chicken farm to get your chickens direct??

Yolo -- consider yourself lucky with grocery selections! I haven't noticed squash in at least a couple of months in the stores or the outdoor markets (but to be honest I have not trekked all over looking for the them.) I'm hitting Carrefour this morning and maybe they'll have some. They never have yummy ones like acorn squash...I feel lucky when I can find sweet potatoes which are imported at great expense. I'll pay whatever price I have to for them however. Plus I horde them; I might share with my hubby but not with my daughter since she doesn't really like them and won't eat much if I give her any. I consider this a supreme waste of a food I CAN eat without any problems!

I've tried organic chicken from the bio stores and it was vile. I opened the sealed package and it reeked in a really bad way. It was well before the expiration date but I'd been told they bring it down from Warsaw (no local place produces it) and I have doubts about how well they refrigerated it during transport. I still cringe at the thought of it. *shudder* This was from one of the best bio stores here supposedly.

There is a woman I've found who raises turkeys and she'll slaughter them on request but you're looking at about US$ 30 for a 9 lb turkey. That gets pricey really quickly. So I'm sticking with fish...

Sigh. It is just the price you pay for living overseas.


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BabsV Enthusiast

I turned up this thread on gluten-free resources in Poland. Maybe it will help?

Oh, thanks for sharing. Very interesting. I know about the local gluten free products -- they make a lot with gluten free wheat starch which I can't have (tried it once by accident and was miserable.) I stick to Schar since I can find it at the bio store close to my house and the pasta sometimes shows up at Carrefour. I'm not eating much in the way of gluten-free replacement foods but I do feed the family gluten-free pasta and gluten-free bread sticks plus the ciabatta rolls are amazing (I will admit to having a bite and out of the oven it was delicious!) I'm not at the point of eating out...not sure I trust it anyway, wheat and barley ingredients are EVERYWHERE in Polish cuisine. Maybe if I were further along in the healing process...I know that Yellow Dog (Asian cuisine) here in Krakow is good about the gluten-free thing -- aware of cross contamination and has a lot of Thai dishes that are naturally gluten-free. There is also a place in Kazimierz that is almost 100% gluten-free as the owner has had to go gluten-free. He told my husband that basically the only things that would end up having gluten by the time he was done with revamping the menu was the desserts because the price of gluten-free replacement flours is so expensive here. I might have to try it before we leave.

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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
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      @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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