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Celiac In The Real World


Sarunski

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Sarunski Newbie

Hey all,

I've been gluten-free since August and I am realizing just how sensitive I am. If it says same equipment or facility, there is a high chance I will be glutened. I recently started the final semester of college as a student teacher in a high school classroom. I've been glutened a few times throughout the semester, luckily a few of them have been on weekends so I could recover enough to go back to work. I only have so many days I can miss, but I can't help it if my source of food (the cafeteria) accidentally glutens me. I try to cook as much as I can on my own, but with financial restrictions like gas money and no source of income, it's extremely hard for me to afford it right now. I don't know what to do! How do most people deal with this if you are glutened and have to go to work. I have really bad symptoms like severe mood changes, the usual abdominal pains and problems to where I might as well not go anywhere. Any tips? What is it really like to live and be gluten free in the real world?


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Cujy Apprentice

Sarunski, I know what you mean about the expense...I can't afford the diet either as we are on one income, Im just buying some things here and there, and trying to stock up on some ingrediants so I can make my own stuff. I deffinately can't afford for my whole family to eat that stuff, and unfortunately because of the no preservatives, it goes bad much faster....I also have the same abdominal pains that you do, its doubled over almost a continous cramp. I am very new to the diet and finding it very hard re expense and knowledge.

I don't work, I have to stay home with my son who had a heart transplant and a stroke so I am busy and find cooking an absolute nightmare.

Having said that though, I made a HUGE pot of beef/veggie soup the other night and froze almost all of it. That way if I don't feel like cooking I can take a container out and stick it in the mic. Last night it was caramel apple pork chops with smashed potatoes and green beans almandine....extravagant for me, but really not a big deal....made enough that I have leftovers for tonight too. The potatoes are crazy easy to make and would make something good for you to take to work.

Just a thought, and like I said there are others on this board who are WAAAAAAAAY more knowledgeable then me, but know that you are not alone, in pain or frustration!

Take care!

Angela

birdie22 Enthusiast

You said you are student teaching and eating at the school cafeteria is that correct? Can you prepare your own lunch and bring it? I would think that is safest. Could you supplement some cafeteria food with your own or stick to things that come individually packaged like fruit (things with peels like banana, orange), single serve fruit or applesauce cups, cheese sticks (if you can do dairy), yogurt, nuts? My guess is the cafeteria food isn't all that tasty anyway.

aeraen Apprentice

Believe me, it gets better and easier once you've gotten used to it. There are pages and pages in these forums of inexpensive ways to make your own food. The only thing you can't replicate gluten free is convenience. It will take you time to make your own food, but it doesn't have to be spendy.

First of all, if it is affecting your job performance (I'm assuming that leaving a classroom to run to the restroom could do that), stop relying on the cafeteria for lunches. Heck, as a cost saving (as well as nutrition) measure, my son brought all of his lunches from home. He isn't celiac, but it saved us money rather than costing more.

Second, stop buying the packaged gluten-free foods. Instead, find your local Asian food store. There you will find a wealth of rice based ingredients, especially flour and noodles. I find my favorite rice based crackers there. A can of tuna, a little mayo and I have the ingredients for tuna salad on crackers. Nice lunch. Replace the tuna salad with chicken salad, egg salad, ham salad, thinly sliced beef roast, hummus... you get the idea. Even PB&J taste pretty good on rice crackers. If you don't have a Asian food store nearby, and can't find the crackers in the Asian aisle of your local food store, Blue Diamond makes some nice rice/almond crackers that can be found in the regular cracker section of most supermarkets.

In the end, what it comes down to is being creative and even a little adventurous. You can eat gluten-free on a shoestring budget.

Monklady123 Collaborator

It really is not more expensive to eat gluten free if you avoid the packaged convenience stuff, and cookies, etc. Bread will probably be more expensive but on the other hand I find I eat way less of it. So a loaf probably lasts just as long as a gluteny one did. I love Udi's with peanut butter for breakfast, but don't like it as sandwiches.

I bring my lunch every day instead of eating in the cafeteria. (I work in a hospital and the only thing I trust in that cafeteria is a hard-boiled egg!)

Some of the things I bring for lunch:

-- leftovers

-- hummos and carrots

-- yogurt

-- applesauce

-- salad

-- lunch meat

-- cheese

-- lettuce (to make lettuce wraps with my meat and cheese)

-- cheese stick

-- pudding

-- soup

-- fruit - fresh or canned, depending on the fruit and the season

-- frozen vegetables (I buy those Steamfresh bags, cook them at home in the morning in the microwave, then bring them to work)

-- rice (cook up a bunch at once then you have several days' worth)

-- hard boiled egg

-- chips and guacamole (I buy individual packs of guacamole since it goes brown as soon as you open it)

That's just off the top of my head. None of that is made specifically "gluten free", it just is naturally. When I cook dinner I often make extra to be used for lunches. Yesterday I took sausage, mashed potatoes, and corn.

eatmeat4good Enthusiast

I went Paleo to fix the problem.

I have saved a ton of money.

Meat, fruit, vegetables, nuts.

A1 and mayo and mustard.

No gluten free grain flours or products.

If we crave a sweet I make Nestle toll house recipe and sub Almond flour for the flour portion.

The more you eat mainly meat, the less you really have to buy all that other stuff.

My food budget is cut by 25% at least just by not buying any packaged foods or grain products at all.

I mean we Will buy gluten free bread, but it lasts just forever in the freezer. we eat like 2 slices a week each and there are 2 of us gluten free.

My first month gluten free I bought all that stuff, but soon realized there was very little nutrition in it.

Good fats, protein, fruit and veggie are great for your metabolism too.

Corn tortilla's with bakad chicken mayo and lettuce are great if you miss a sandwich. Not the same but just great for us.

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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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