Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Please Cancel My Optimism


heathenly

Recommended Posts

heathenly Apprentice

I started out optimistic and positive about eating gluten-free, based on the immediate and significant benefits I received once I stopped eating it. Even though I didn't test positive for Celiac (which made all of my gluten-eating friends happy, because they thought I could cheat once in a while with no long-term repercussion), I have never caved to temptation to eat even a little gluten. I thought being so conscientious and well-behaved would translate into feeling better. That hasn't happened like I thought it would. Now, I just feel hopeless and frustrated.

Whole foods: Kinda expensive, huh? I'm doing my best, but the cost of food is killing me and I'm running out of both food and food money before payday.

Accidental glutening: no good dietary deed goes unpunished, it seems. No matter how conscious I am with food choices, I seem to have a small but miserable reaction almost on a weekly basis, and I can't pinpoint what I ate that secretly contained gluten (or something else I'm sensitive to?). Frustrating.

More food sensitivities: I can't help but notice that dairy and possibly corn seems to be a problem. I want to stay in denial so that I have more foods to choose from, but... yeah. The thought of having to limit my diet further makes me want to go lie down in a busy street.

Food paranoia: it's exhausting. I don't feel I can trust anything I eat anymore. Even/especially items labeled "gluten-free."

Sigh. What I would give for those carefree days when I could eat anything prepared anywhere...

/whining

One cute thing: When I prepare a sandwich for my eight year old, she reminds me to wash the gluten off my hands.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



shadowicewolf Proficient

Whole foods are cheaper than processed most of the time. Buy in season, go for sales, etc. For example i'll take a lrge roaust for about $10 and cut it in thirds. I can get two to threemeals out of oeach portion. Then i'll take a head of cabbage and again take a third of it for a meal. I'll add carrots and some onions or whatever else i have in the frig. Then i make this into a soup and serve rice on the side.

A good idea would be to get yourself a crock pot to make your own meals out of if cc is an issue.

I spend about $30 or so dollars per week on food for myself, that is with my chex and cleaning supplies. You can do it it just takes timme to learn

Trudyjerry Rookie

Honestly, food is expensive these days no matter what you eat. That being said, try to buy in season, look for sales, and use coupons. We spend roughly $40 a person a week at our house. We all eat gluten and dairy free at home.

When I first started out we did spend a lot more, only because we were cooking two meals for dinner. One for me and one for everybody else. It's easier and cheaper for all of us to eat gluten and dairy free. Another thing that I've learned is what you can make yourself, you should make yourself. I used to spend money on gluten free cookies. Now I just make them myself. I want muffins, I bake muffins. We also make our own almond milk and soy milk. We don't save much on the almond milk but we can make a half gallon of soy milk for a fraction of the cost of the store bought stuff and we know exactly what goes into it. I don't care for the store bought gluten free bread but when I bake a loaf at home, it all gets eaten the same day. The first time I made gluten free pumpernickel bread, we ate two loaves of it. So much for saving one for another day.

I'm sorry that you are having a hard time right now but trust me, it does get easier. I'm sure most, if not all, of us were feeling those things at one point or another. I know I have been there. For me, it really hit on my birthday. No birthday cake or ice cream? I was ready to scream. That's when I started making everything myself. I do still have the occasional melt down in stores. I was highly upset loosing things like twizzlers. I love those but I can't have them anymore. I have burst into tears on more than one occasion in the candy aisle. My husband can attest to the fits I've thrown in the dairy section because I wanted yogurt or some new coffee creamer that just came out.

Six months in I figured out that I was reacting to peas. That set off another downward spiral for me. I realized that it wasn't just peas. I was also reacting to corn, soy, radishes, on top of my other food allergies being magnified. I was starting to feel like there was nothing left that I could eat. I came on here to vent and eventually incorporated it into my diet. Luckily, I can now handle soy and corn based things that are made at home. I still can't handle soy based store bought items. Maybe the problem wasn't the soy but rather something else that was put into the product or the way the soy was handled.

Just try to remember that it does get easier and you can always come here to vent because we do understand. Sending you great big HUGS.

joolsjewels Newbie

What kinda of reaction did you have to peas? Bloating, extreme gas? I had those problems a few summers ago with peas, but also with carrots and tomatoes. It turned out to be sugar and more specifically yeast overgrowth. The sugars, even natural sugars in fruit and veg, caused a painful explosion in my digestive tract. Even soy milk and rice milk have sugar. I had to take a digestive supplement and go on a sugar free diet for 2 months. That meant small bland meals and often so my blood sugar would not drop too low.

Trudyjerry Rookie

What kinda of reaction did you have to peas? Bloating, extreme gas? I had those problems a few summers ago with peas, but also with carrots and tomatoes. It turned out to be sugar and more specifically yeast overgrowth. The sugars, even natural sugars in fruit and veg, caused a painful explosion in my digestive tract. Even soy milk and rice milk have sugar. I had to take a digestive supplement and go on a sugar free diet for 2 months. That meant small bland meals and often so my blood sugar would not drop too low.

I definately had the extreme bloating but instead of gas, I ended up with the dread "D". I was actually tested for Yeast overgrowth a few months back and I came back negative. I know that's not it, aside from me not having problems with anything else that's high in sugars. I do take probiotics on a daily basis but I haven't really noticed a difference.

Honestly the first time it happened, I thought that I had accidentally contaminated my slip pea soup with something else but then it happened again with just canned peas. So we just make lentil soup instead.

I do however have gastritis and I don't know if that can play a role in reacting with certain foods.

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Are Lindt chocolate balls gluten free?

    2. - BlessedinBoston replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Are Lindt chocolate balls gluten free?

    3. - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      14

      My only proof

    4. - Jmartes71 replied to Jmartes71's topic in Related Issues & Disorders
      14

      My only proof

    5. - marion wheaton posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Are Lindt chocolate balls gluten free?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,410
    • Most Online (within 30 mins)
      7,748

    Marilyn Gingras
    Newest Member
    Marilyn Gingras
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • 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 
    • marion wheaton
      Wondering if anyone knows whether Lindt chocolate balls are gluten free. The Lindt Canadian website says yes but the Lindt USA website says no. The information is a bit confusing.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.