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 catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      how much gluten do I need to eat before blood tests?

    2. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      how much gluten do I need to eat before blood tests?

    3. - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      how much gluten do I need to eat before blood tests?

    4. - catnapt posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      how much gluten do I need to eat before blood tests?

    5. - trents replied to McKinleyWY's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      Accuracy of testing concerns

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,256
    • Most Online (within 30 mins)
      7,748

    Christie Fassel
    Newest Member
    Christie Fassel
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • trents
      So, essentially all of the nutrition in the food we eat is absorbed through the villous lining of the small bowel. This is the section of the intestinal track that is damaged by celiac disease. This villous lining is composed of billions of finger-like projections that create a huge amount of surface area for absorbing nutrients. For the celiac person, when gluten is consumed, it triggers an autoimmune reaction in this area which, of course, generates inflammation. The antibodies connected with this inflammation is what the celiac blood tests are designed to detect but this inflammation, over time, wears down the finger-like projections of the villous lining. Of course, when this proceeds for an extended period of time, greatly reduces the absorption efficiency of the villous lining and often results in many and various nutrient deficiency-related health issues. Classic examples would be osteoporosis and iron deficiency. But there are many more. Low D3 levels is a well-known celiac-caused nutritional deficiency. So is low B12. All the B vitamins in fact. Magnesium, zinc, etc.  Celiac disease can also cause liver inflammation. You mention elevated ALP levels. Elevated liver enzymes over a period of 13 years was what led to my celiac diagnosis. Within three months of going gluten free my liver enzymes normalized. I had elevated AST and ALT. The development of sensitivities to other food proteins is very common in the celiac population. Most common cross reactive foods are dairy and oats but eggs, soy and corn are also relatively common offenders. Lactose intolerance is also common in the celiac population because of damage to the SB lining.  Eggs when they are scrambled or fried give me a gut ache. But when I poach them, they do not. The steam and heat of poaching causes a hydrolysis process that alters the protein in the egg. They don't bother me in baked goods either so I assume the same process is at work. I bought a plastic poacher on Amazon to make poaching very easy. All this to say that many of the issues you describe could be caused by celiac disease. 
    • catnapt
      thank you so much for your detailed and extremely helpful reply!! I can say with absolute certainty that the less gluten containing products I've eaten over the past several years, the better I've felt.   I wasn't avoiding gluten, I was avoiding refined grains (and most processed foods) as well as anything that made me feel bad when I ate it. It's the same reason I gave up dairy and eggs- they make me feel ill.  I do have a bit of a sugar addiction lol so a lot of times I wasn't sure if it was the refined grains that I was eating - or the sugar. So from time to time I might have a cookie or something but I've learned how to make wonderful cookies and golden brownies with BEANS!! and no refined sugar - I use date paste instead. Pizza made me so ill- but I thought it was probably the cheese. I gave up pizza and haven't missed it. the one time I tried a slice I felt so bad I knew I'd never touch it again. I stopped eating wheat pasta at least 3 yrs ago- just didn't feel well after eating it. I tried chick pea pasta and a few others and discovered I like the brown rice pasta. I still don't eat a lot of pasta but it's nice for a change when I want something easy. TBH over the years I've wondered sometimes if I might be gluten intolerant but really believed it was not possible for me to have celiac disease. NOW I need to know for sure- because I'm in the middle of a long process of trying to find out why I have a high parathyroid level (NOT the thyroid- but rather the 4 glands that control the calcium balance in your body) I have had a hard time getting my vit D level up, my serum calcium has run on the low side of normal for many years... and now I am losing calcium from my bones and excreting it in my urine (some sort of renal calcium leak) Also have a high ALP since 2014. And now rapidly worsening bone density.  I still do not have a firm diagnosis. Could be secondary HPT (but secondary to what? we need to know) It could be early primary HPT. I am spilling calcium in my urine but is that caused by the high parathyroid hormone or is it the reason my PTH is high>? there are multiple feedback loops for this condition.    so I will keep eating the bread and some wheat germ that does not seem to bother me too much (it hasn't got enough gluten to use just wheat germ)    but I'm curious- if you don't have a strong reaction to a product- like me and wheat germ- does that mean it's ok to eat or is it still causing harm even if you don't have any obvious symptoms? I guess what you are saying about silent celiac makes it likely that you can have no symptoms and still have the harm... but geez! you'd think they'd come up with a way to test for this that didn't require you to consume something that makes you sick! I worry about the complications I've been reading about- different kinds of cancers etc. also wondering- are there degrees of celiac disease?  is there any correlation between symptoms and the amnt of damage to your intestines? I also need a firm diagnosis because I have an identical twin sister ... so if I have celiac, she has it too- or at least the genetic make up for having it. I did have a VERY major stress to my body in 2014-2016 time frame .. lost 50lbs in a short period of time and had severe symptoms from acute protracted withdrawal off an SSRI drug (that I'd been given an unethically high dose of, by a dr who has since lost his license)  Going off the drug was a good thing and in many ways my health improved dramatically- just losing 50lbs was helpful but I also went  off almost a dozen different medications, totally changed my diet and have been doing pretty well except for the past 3-4 yrs when the symptoms related to the parathyroid issue cropped up. It is likely that I had low vit D for some time and that caused me a lot of symptoms. The endo now tells me that low vit D can be caused by celiac disease so I need to know for sure! thank you for all that great and useful information!!! 
    • trents
      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
    • trents
      The biopsy looks for damage to the mucosal lining of the small bowel from the inflammation caused by celiac disease when gluten is ingested. Once you remove gluten from the diet, inflammation subsides and the mucosal lining begins to heal. 
×
×
  • 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.