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 Allow Me To Rant...

Pamela B.

By Pamela B.
in Coping with Celiac Disease

Recommended Posts

Pamela B. Apprentice
Pamela B.
Posted

Yay for Labor Day picnics, right?

...

...

...

Yeah; didn't think so.

I've been gluten free, minus being glutened a few times from CC, for almost 6 months now. I used to have the same mindset with gluten CC when I went out to eat with my friends that I used to have about alcohol ("Sure, I might have a hangover the next day, but the bonding with friends and good times will be worth it!"), but I've found that the gluten CC just doesn't make it worth it.

A bunch of my friends are getting together for a BBQ today. Normally I'd be excited, but now meetups that center around food like this just fill me with dread. I'm not even going to bother going. It still upsets me too much to be around all this food that I can't even eat. One person is bringing praline pecan brownies... something I'll never be able to eat unless I make them myself, and I really, really hate cooking.

Also, in a couple of weeks, my boss is taking all of his employees to Buca di Beppo. An Italian restaurant. It's a biannual thing, and this is the first outing there since finding out I'm gluten intolerant. There do have a small gluten free menu, but there's no way I'll be able to handle being around all that fettucine alfredo, spaghetti, and the absolute best cake I've ever had in my entire life. Probably won't go there, either, unless I stuff myself with food and then go at the very end.

I just feel like curling up into a ball and crying.

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

Celiac.com Sponsor (A8-M):


zus888 Contributor
zus888
Posted

I feel your pain, Sista!! Right there with you!! I've bowed out of many a picnic and gatherings this year due to the same thing. I'll be gluten-free for 6 months in just 4 days. Nope, not counting the days over here...

ravenwoodglass Mentor
ravenwoodglass
Posted

Sorry this is so hard for you right now. Hopefully at some point you will be able to go to functions like this and enjoy the company of your freinds or coworkers. If the restaurant has a gluten-free menu you may want to rethink going. It is hard when so many social functions involve food but you don't want to isolate yourself. Eventually the invitations will stop coming if you do.

Hang in there and cry if you need to. We're here for you.

((((((((((((((((((((((((((HUGS)))))))))))))))))))))))))))))

rosetapper23 Explorer
rosetapper23
Posted

Ah, the bitterness of accepting the gluten-free diet. I remember it well. It took me about three years to get over the pain of watching other people enjoy foods that I used to love to eat. However, I eventually either forgot how things tasted or had come to terms with the fact that those foods were poison to me...because I no longer feel tempted by those foods. When I go to potlucks, I eat before I go, bring a nice bottle of wine and some gluten-free salad or appetizers...and simply enjoy chatting with people. It doesn't bother me any more that they're eating poison. Now that I follow the primal/paleo diet, I feel even more in control of my diet. Because followers of the primal/paleo diet are eating a certain way voluntarily, they don't seem to feel deprived. Unfortunately, when the choice is made FOR us (as with celiac), that feeling of being deprived can stay with us for a while. However, now I feel as though my diet is my choice voluntarily, and I feel much less deprived, as a result.

In a way, we're all pretty lucky that we live in a time when some restaurants actually have gluten-free menus--something that was rare even five years ago. Also, as people become more cognizant and understanding of conditions like celiac, the more educated among them tend to kindly bring gluten-free dishes to potlucks for their celiac friends. I'm always touched when this happens. At a recent high school reunion potluck, two former classmates brought gluten-free dishes because they knew I would be there and would need something to eat. What kindness!

Please know that the bitterness will probably resolve eventually...and there's always the hope that the vaccine will become available in the next few years for those of us who wish to return to eating gluten. Personally, I have no interest in returning to my former diet.

rustycat Rookie
rustycat
Posted

I guess we all find our ways to deal with it. Some days it seems easy and other days I'd give anything to eat "normal" food.

Monael Apprentice
Monael
Posted

I haven't been gluten free for a very long time, maybe 6 months or less? So maybe this will bother me more and more as time goes on, and also I might not be supersensitive so I don't know when I have been a victim of cc? But I have had luck so far. At a recent bbq, I just ate meat, corn on the cob, salad and fruit. I even had a hot dog without the bun.

But I think I would be pretty bummed out at Buca di Beppo's too! They have the best italian food. I wouldn't want to go either. I didn't know they had a gluten free menu.

Gemini Experienced
Gemini
Posted

Yay for Labor Day picnics, right?

...

...

...

Yeah; didn't think so.

I've been gluten free, minus being glutened a few times from CC, for almost 6 months now. I used to have the same mindset with gluten CC when I went out to eat with my friends that I used to have about alcohol ("Sure, I might have a hangover the next day, but the bonding with friends and good times will be worth it!"), but I've found that the gluten CC just doesn't make it worth it.

A bunch of my friends are getting together for a BBQ today. Normally I'd be excited, but now meetups that center around food like this just fill me with dread. I'm not even going to bother going. It still upsets me too much to be around all this food that I can't even eat. One person is bringing praline pecan brownies... something I'll never be able to eat unless I make them myself, and I really, really hate cooking.

Also, in a couple of weeks, my boss is taking all of his employees to Buca di Beppo. An Italian restaurant. It's a biannual thing, and this is the first outing there since finding out I'm gluten intolerant. There do have a small gluten free menu, but there's no way I'll be able to handle being around all that fettucine alfredo, spaghetti, and the absolute best cake I've ever had in my entire life. Probably won't go there, either, unless I stuff myself with food and then go at the very end.

I just feel like curling up into a ball and crying.

Why wouldn't you go to Buca's? They have the gluten-free menu and the food from that menu is pretty good! I don't mind attending anything if they offer a good gluten-free menu. I have never had any trouble with their food and I am extremely sensitive to CC.

You are lucky that they chose a restaurant that has a gluten-free menu...they never accommodate me at work....ever. They always pick places where I couldn't get a safe meal, period.

Once you get into the gluten-free diet more, you won't care if everyone else is eating all that crappy pasta and cake. One thing I noticed early on in the diet is that everyone who ate like that didn't feel so great after the meal....all bloated and full. When you stick to proteins and veggies, that won't happen...you feel great after wards. I think Buca has some desserts for Celiacs but I don't know what they are because I never eat dessert. The red wine I drink has enough sugar to satisfy my cravings! :P

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

Celiac.com Sponsor (A8-M):


Flasaltwater Apprentice
Flasaltwater
Posted

Why wouldn't you go to Buca's? They have the gluten-free menu and the food from that menu is pretty good! I don't mind attending anything if they offer a good gluten-free menu. I have never had any trouble with their food and I am extremely sensitive to CC.

You are lucky that they chose a restaurant that has a gluten-free menu...they never accommodate me at work....ever. They always pick places where I couldn't get a safe meal, period.

Once you get into the gluten-free diet more, you won't care if everyone else is eating all that crappy pasta and cake. One thing I noticed early on in the diet is that everyone who ate like that didn't feel so great after the meal....all bloated and full. When you stick to proteins and veggies, that won't happen...you feel great after wards. I think Buca has some desserts for Celiacs but I don't know what they are because I never eat dessert. The red wine I drink has enough sugar to satisfy my cravings! :P

Not to stray from the topic but which red wine do you drink that's safe for your tummy.

Gemini Experienced
Gemini
Posted

Not to stray from the topic but which red wine do you drink that's safe for your tummy.

I drink all types of red wine....malbec, cabernet, syrah....you name it, I drink it.

I tend to buy American, Australian and South American reds and not so much European reds because I think the wines from these countries are every bit as good as their European counterparts. I could not drink alcohol at all before I was diagnosed because my stomach was too inflamed but once I healed, I found I can drink red wine without any issues.

I know there has been a lot of talk on this forum about the possibility of wine containing gluten but I have a lot trouble buying into that because I am one of those very sensitive Celiacs..I can't eat from shared lines or from non-dedicated facilites because I get sick. If there were any gluten in wine, I just would be sick because I have a glass every night with my dinner. Alcohol can be very irritating to the GI tract so that might be a problem for some.

Archived

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

Go to topic listing

  • 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. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Son's legs shaking

      @lizzie42, You're being a good mom, seeking answers for your son. Cheers! Subclinical thiamine deficiency commonly occurs with anemia. An outright Thiamine deficiency can be precipitated by the consumption of a high carbohydrate meal. Symptoms of Thiamine deficiency include feeling shakey or wobbly in the legs, muscle weakness or cramps...
    2. Scott Adams
      - Scott Adams replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Bob red mill gluten free oats

      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this...
    3. knitty kitty
      - knitty kitty replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      High TTG-IgG and Normal TTG-IgA

      @SamAlvi, It's common with anemia to have a lower tTg IgA antibodies than DGP IgG ones, but your high DGP IgG scores still point to Celiac disease. Since a gluten challenge would pose further health damage, you may want to ask for a DNA test to see if you have any of the commonly known genes for Celiac disease. Though having the genes for Celiac...
    4. trents
      - trents replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      High TTG-IgG and Normal TTG-IgA

      Currently, there are no tests for NCGS. Celiac disease must first be ruled out and we do have testing for celiac disease. There are two primary test modalities for diagnosing celiac disease. One involves checking for antibodies in the blood. For the person with celiac disease, when gluten is ingested, it produces an autoimmune response in the lining...
    5. SamAlvi
      - SamAlvi replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      High TTG-IgG and Normal TTG-IgA

      Thank you for the clarification and for taking the time to explain the terminology so clearly. I really appreciate your insight, especially the distinction between celiac disease and NCGS and how anemia can point more toward celiac. This was very helpful for me.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,869
    • Most Online (within 30 mins)
      7,748
    LMGarrison
    Newest Member
    LMGarrison
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      @lizzie42, You're being a good mom, seeking answers for your son.  Cheers! Subclinical thiamine deficiency commonly occurs with anemia.  An outright Thiamine deficiency can be precipitated by the consumption of a high carbohydrate meal.   Symptoms of Thiamine deficiency include feeling shakey or wobbly in the legs, muscle weakness or cramps, as well as aggression and irritability, confusion, mood swings and behavior changes.  Thiamine is essential to the production of neurotransmitters like serotonin and dopamine which keep us calm and rational.   @Jsingh, histamine intolerance is also a symptom of Thiamine deficiency.  Thiamine is needed to prevent mast cells from releasing histamine at the slightest provocation as is seen in histamine intolerance.  Thiamine and the other B vitamins and Vitamin C are needed to clear histamine from the body.  Without sufficient thiamine and other B vitamins to clear it, the histamine builds up.  High histamine levels can change behavior, too.  High histamine levels are found in the brains of patients with schizophrenia.  Thiamine deficiency can also cause extreme hunger or conversely anorexia.   High carbohydrate meals can precipitate thiamine deficiency because additional thiamine is required to process carbohydrates for the body to use as fuel.  The more carbohydrates one eats daily, the more one needs additional thiamine above the RDA.  Thiamine is water soluble, safe and nontoxic even in high doses. Keep in mind that gluten-free processed foods like cookies and such are not required to be fortified and enriched with vitamins and minerals like their gluten containing counterparts are.  Limit processed gluten-free foods.  They are often full of empty calories and unhealthy saturated fats and additives, and are high in histamine or histamine release triggers.  It's time you bought your own vitamins to supplement what is not being absorbed due to malabsorption of Celiac disease.  Benfotiamine is a form of Thiamine that has been shown to improve intestinal health as well as brain function. Do talk to your doctors and dieticians about supplementing with the essential vitamins and minerals while your children are growing up gluten free.  Serve nutritionally dense foods.  Meats and liver are great sources of B vitamins and minerals. Hope this helps!  Keep us posted on your progress!
    • Scott Adams
      Bob red mill gluten free oats

      By Scott Adams · Posted

      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this category, and eliminating them is the best way to figure this out. Some people substitute gluten-free quinoa flakes for oats if they want a hot cereal substitute. If you are interested in summaries of scientific publications on the topic of oats and celiac disease, we have an entire category dedicated to it which is here: https://www.celiac.com/celiac-disease/oats-and-celiac-disease-are-they-gluten-free/   
    • knitty kitty
      High TTG-IgG and Normal TTG-IgA

      By knitty kitty · Posted

      @SamAlvi, It's common with anemia to have a lower tTg IgA antibodies than DGP IgG ones, but your high DGP IgG scores still point to Celiac disease.   Since a gluten challenge would pose further health damage, you may want to ask for a DNA test to see if you have any of the commonly known genes for Celiac disease.  Though having the genes for Celiac is not diagnostic in and of itself, taken with the antibody tests, the anemia and your reaction to gluten, it may be a confirmation you have Celiac disease.   Do discuss Gastrointestinal Beriberi with your doctors.  In Celiac disease, Gastrointestinal Beriberi is frequently overlooked by doctors.  The digestive system can be affected by localized Thiamine deficiency which causes symptoms consistent with yours.  Correction of nutritional deficiencies quickly is beneficial.  Benfotiamine, a form of thiamine, helps improve intestinal health.  All eight B vitamins, including Thiamine (Benfotiamine), should be supplemented because they all work together.   The B vitamins are needed in addition to iron to correct anemia.   Hope this helps!  Keep us posted on your progress!
    • trents
      High TTG-IgG and Normal TTG-IgA

      By trents · Posted

      Currently, there are no tests for NCGS. Celiac disease must first be ruled out and we do have testing for celiac disease. There are two primary test modalities for diagnosing celiac disease. One involves checking for antibodies in the blood. For the person with celiac disease, when gluten is ingested, it produces an autoimmune response in the lining of the small bowel which generates specific kinds of antibodies. Some people are IGA deficient and such that the IGA antibody tests done for celiac disease will have skewed results and cannot be trusted. In that case, there are IGG tests that can be ordered though, they aren't quite as specific for celiac disease as the IGA tests. But the possibility of IGA deficiency is why a "total IGA" test should always be ordered along with the TTG-IGA. The other modality is an endoscopy (scoping of the upper GI track) with a biopsy of the small bowel lining. The aforementioned autoimmune response produces inflammation in the small bowel lining which, over time, damages the structure of the lining. The biopsy is sent to a lab and microscopically analyzed for signs of this damage. If the damage is severe enough, it can often be spotted during the scoping itself. The endoscopy/biopsy is used as confirmation when the antibody results are positive, since there is a small chance that elevated antibody test scores can be caused by things other than celiac disease, particularly when the antibody test numbers are not particularly high. If the antibody test numbers are 10x normal or higher, physicians will sometimes declare an official diagnosis of celiac disease without an endoscopy/biopsy, particularly in the U.K. Some practitioners use stool tests to detect celiac disease but this modality is not widely recognized in the medical community as valid. Both celiac testing modalities outlined above require that you have been consuming generous amounts of gluten for weeks/months ahead of time. Many people make the mistake of experimenting with the gluten free diet or even reducing their gluten intake prior to testing. By doing so, they invalidate the testing because antibodies stop being produced, disappear from the blood and the lining of the small bowel begins to heal. So, then they are stuck in no man's land, wondering if they have celiac disease or NCGS. To resume gluten consumption, i.e., to undertake a "gluten challenge" is out of the question because their reaction to gluten is so strong that it would endanger their health. The lining of the small bowel is the place where all of the nutrition in the food we consume is absorbed. This lining is made up of billions of microscopically tiny fingerlike projections that create a tremendous nutrient absorption surface area. The inflammation caused by celiac disease wears down these fingers and greatly reduces the surface area needed for nutrient absorption. Thus, people with celiac disease often develop iron deficiency anemia and a host of other vitamin and mineral deficiencies. It is likely that many more people who have issues with gluten suffer from NCGS than from celiac disease. We actually know much more about the mechanism of celiac disease than we do about NCGS but some experts believe NCGS can transition into celiac disease.
    • SamAlvi
      High TTG-IgG and Normal TTG-IgA

      By SamAlvi · Posted

      Thank you for the clarification and for taking the time to explain the terminology so clearly. I really appreciate your insight, especially the distinction between celiac disease and NCGS and how anemia can point more toward celiac. This was very helpful for me.
×
×
  • 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.