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

Comments From Others

Googles

By Googles
in Coping with Celiac Disease

Recommended Posts

Googles Community Regular
Googles
Posted

Does it annoy you when others make comments about your celiac. I was at practicum the other day and one of the interns brought in cookies. We were all waiting in the little kitchenette area and one of the staff (as people were eating cookies) 'at least you don't have to worry about eating these'. It was so frustrating. I just was like "uh, huh." When I really wanted to say was, "WTF? I wish I could eat those things. It would make my life a lot easier." Ugh. I know she was just trying to make it less awkward, and I realized this right after I took a breath. I wish people weren't uncomfortable eating around me. I've gotten over it (most of the time) when people eat around me. I wish they would be comfortable. I don't even have gluten cravings after getting glutened any more (knock on wood). I wish I could just tell people in my life to not worry about me and food and they would believe me.

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

Celiac.com Sponsor (A8-M):


pricklypear1971 Community Regular
pricklypear1971
Posted

I understand. Funny how it usually isn't about YOU but about them, isn't it?

I can't knock people too much, I remember the days of blissful ignorance....

thleensd Enthusiast
thleensd
Posted

LOL.... I know what you mean. People in general don't know what to say about a lot of touchy topics: illnesses, weight loss, break ups... I try to laugh it off. I'm not always successful but I try. ;-)

Today at a holiday concert there were free cookies. I'm learning to be happy for other people ( :P ) and so as I walked past an aquaintance eating cookies at the table (that smelled #$%^&* good, darnit!) I said, "mmm, cookies!" She said, "yeah! Oh, and you should try the Roca! ..ur, uh um... wait, you can't have any, can...voice trails off...SORRY!"

I just laughed and waved her off. I don't keep track of what people do and don't eat, so it's just funny. My celiac disease made me very ill, so it was kind of high profile.

I'm glad they care. I wish it wasn't awkward. Oh well.

AVR1962 Collaborator
AVR1962
Posted

I like the thought that was in your head, probably would have shocked them to have the words actually come out of your mouth. They have no clue!!

Yesterday morning I was cooking myself some sausage for breakfast and husband says with this pouty whine in his voice, "oh eating what I can't have." BS! He has problems with gout so he had to limit his meats, or at least is supposed to. If he gets too much meat on a continual basis he will get a flare-up in his toe. However, he does take daily meds for this and they can increase the dosage, it's not like there is no solution. I turned to him and told him that actually he could ahve the sausage if he just ate less meat the rest of the day. Who was it that totally pigged out and gorged themselves at the Christmas dinner buffet we went to recently, regradless of that 6 oz meat guideline? And who was stuck eating salad and fruit because everything was loaded with gluten? Who is going without? Ugh, people!!!

pricklypear1971 Community Regular
pricklypear1971
Posted

LOL.... I know what you mean. People in general don't know what to say about a lot of touchy topics: illnesses, weight loss, break ups... I try to laugh it off. I'm not always successful but I try. ;-)

Today at a holiday concert there were free cookies. I'm learning to be happy for other people ( :P ) and so as I walked past an aquaintance eating cookies at the table (that smelled #$%^&* good, darnit!) I said, "mmm, cookies!" She said, "yeah! Oh, and you should try the Roca! ..ur, uh um... wait, you can't have any, can...voice trails off...SORRY!"

I just laughed and waved her off. I don't keep track of what people do and don't eat, so it's just funny. My celiac disease made me very ill, so it was kind of high profile.

I'm glad they care. I wish it wasn't awkward. Oh well.

I would have laughed and said "I can have cookies, just not THOSE".

Yeah, people don't get the part about glutenous foods making me see rat poison. I gave NO DESIRE to eat it.

I do look at stuff and think "how can I recreate THAT???". but that's really the extent of it.

Sure, there are a few things that pull at my heart strings but it just ain't worth it.

lynnelise Apprentice
lynnelise
Posted

My husband was being pouty about being the DD at his own company Christmas party. It's a fancy dinner at a lovely resort with the best food and I can't eat anything but salad. You better believe I'm taking advantage of the open bar! lol! Trust me I love food, I'd much rather pig out at the dinner than drink!!!

Aside from celiac I have chronic mono so I feel beyond tired and generally horrible the majority of the time. I get a lot of people who say they understand because "I was too tired to get to the gym this morning" or "the holidays wear everybody out". I guess they are trying to be supportive but really they are just minimizing my concerns.

bumblebee-carnival Newbie
bumblebee-carnival
Posted

I'm back in college and one of my teachers bought the class pizza on our last day. She said to me, "Have some pizza." I said, "Thanks, but I am gluten intolerant." She looked at me and said, "You want a breadstick?" Me and another girl looked at each other and started cracking up. I said, "Um, thank you, no." She then turned around and said, "Wait? What did you say?" Then we all started laughing. Her brother has celiac, so she knew all about it and had just heard me wrong. But it was hilarious at the time.

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

Celiac.com Sponsor (A8-M):


sa1937 Community Regular
sa1937
Posted

I'm back in college and one of my teachers bought the class pizza on our last day. She said to me, "Have some pizza." I said, "Thanks, but I am gluten intolerant." She looked at me and said, "You want a breadstick?" Me and another girl looked at each other and started cracking up. I said, "Um, thank you, no." She then turned around and said, "Wait? What did you say?" Then we all started laughing. Her brother has celiac, so she knew all about it and had just heard me wrong. But it was hilarious at the time.

Glad you have a sense of humor, bumblebee! It goes a long way when we run into moments like this!

Googles Community Regular
Googles
Posted
  • Author

So at the same position, my supervisor was giving all the interns candy. She said that as she was packing it up she was hoping that I would be able to eat what she got. She had caught me on a day where I was really tired and had to literally think hard as to if I could eat the Hershey kisses she had given me (given they were out of the original package so I didn't just have an ingredient list). She was so sweet to think about that. She knows because as my supervisor I had to tell her for any accommodations I might need, but it was so sweet of her to think of me.

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. Iam
      - Iam replied to Larzipan's topic in Related Issues & Disorders
      33

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      Yes. I have had the tmj condition for 40 years. My only help was strictly following celiac and also eliminating soy. Numerous dental visits and several professionally made bite plates did very little to help with symptoms
    2. trents
      - trents replied to Scatterbrain's topic in Sports and Fitness
      6

      Feel like I’m starting over

      Cristiana makes a good point and it's something I've pointed out at different times on the forum. Not all of our ailments as those with celiac disease are necessarily tied to it. Sometimes we need to look outside the celiac box and remember we are mortal humans just like those without celiac disease.
    3. Scott Adams
      0

      New Research Reveals Why the Gut May Stay Sensitive Even After a Gluten-Free Diet

    4. bobadigilatis
      - bobadigilatis replied to Larzipan's topic in Related Issues & Disorders
      33

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      Also suffer badly with gluten and TMJD, cutting out gluten has been a game changer, seems to be micro amounts, much less than 20ppm. Anyone else have issues with other food stuffs? Soy (tofu) and/or milk maybe causing TMJD flare-ups, any suggestions or ideas? --- I'm beginning to think it maybe crops that are grown or cured with glyphosphate...
    5. cristiana
      - cristiana replied to Scatterbrain's topic in Sports and Fitness
      6

      Feel like I’m starting over

      Hi @Scatterbrain Thank you for your reply. Some of these things could be weaknesses, also triggered by stress, which perhaps have come about as the result of long-term deficiencies which can take a long time to correct. Some could be completely unrelated. If it is of help, I'll tell you some of the things that started in the first year or two...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,301
    • Most Online (within 30 mins)
      7,748
    Deborah Poovey
    Newest Member
    Deborah Poovey
    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

    • Iam
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By Iam · Posted

      Yes.  I have had the tmj condition for 40 years. My only help was strictly following celiac and also eliminating soy.  Numerous dental visits and several professionally made bite plates  did very little to help with symptoms
    • trents
      Feel like I’m starting over

      By trents · Posted

      Cristiana makes a good point and it's something I've pointed out at different times on the forum. Not all of our ailments as those with celiac disease are necessarily tied to it. Sometimes we need to look outside the celiac box and remember we are mortal humans just like those without celiac disease.
    • bobadigilatis
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By bobadigilatis · Posted

      Also suffer badly with gluten and TMJD, cutting out gluten has been a game changer, seems to be micro amounts, much less than 20ppm.  Anyone else have issues with other food stuffs? Soy (tofu) and/or milk maybe causing TMJD flare-ups, any suggestions or ideas? --- I'm beginning to think it maybe crops that are grown or cured with glyphosphate. Oats, wheat, barley, soy, lentils, peas, chickpeas, rice, and buckwheat, almonds, apples, cherries, apricots, grapes, avocados, spinach, and pistachios.   
    • cristiana
      Feel like I’m starting over

      By cristiana · Posted

      Hi @Scatterbrain Thank you for your reply.   Some of these things could be weaknesses, also triggered by stress, which perhaps have come about as the result of long-term deficiencies which can take a long time to correct.   Some could be completely unrelated. If it is of help, I'll tell you some of the things that started in the first year or two, following my diagnosis - I pinned everything on coeliac disease, but it turns out I wasn't always right!  Dizziness, lightheaded - I was eventually diagnosed with cervical dizziness (worth googling, could be your issue too, also if you have neck pain?)  A few months after diagnosis I put my neck out slightly carrying my seven-year-old above my head, and never assigned any relevance to it as the pain at the time was severe but so short-lived that I'd forgotten the connection. Jaw pain - stress. Tinnitus - I think stress, but perhaps exacerbated by iron/vitamin deficiencies. Painful ribs and sacroiliac joints - no idea, bloating made the pain worse. It got really bad but then got better. Irregular heart rate - could be a coincidence but my sister (not a coeliac) and I both developed this temporarily after our second Astra Zeneca covid jabs.   Subsequent Pfizer jabs didn't affect us. Brain fog - a big thing for people with certain autoimmune issues but in my case I think possibly worse when my iron or B12 are low, but I have no proof of this. Insomnia - stress, menopause. So basically, it isn't always gluten.  It might be worth having your vitamins and mineral levels checked, and if you have deficiencies speak to your Dr about how better to address them?    
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      @NanceK, I do have Hypersensitivity Type Four reaction to Sulfa drugs, a sulfa allergy.  Benfotiamine and other forms of Thiamine do not bother me at all.  There's sulfur in all kinds of Thiamine, yet our bodies must have it as an essential nutrient to make life sustaining enzymes.  The sulfur in thiamine is in a ring which does not trigger sulfa allergy like sulfites in a chain found in pharmaceuticals.  Doctors are not given sufficient education in nutrition (nor chemistry in this case).  I studied Nutrition before earning a degree in Microbiology.  I wanted to know what vitamins were doing inside the body.   Thiamine is safe and nontoxic even in high doses.   Not feeling well after starting Benfotiamine is normal.  It's called the "thiamine paradox" and is equivalent to an engine backfiring if it's not been cranked up for a while.  Mine went away in about three days.  I took a B Complex, magnesium and added molybdenum for a few weeks. It's important to add a B Complex with all eight essential B vitamins. Supplementing just one B vitamin can cause lows in some of the others and result in feeling worse, too.  Celiac Disease causes malabsorption of all the B vitamins, not just thiamine.  You need all eight.  Thiamine forms including Benfotiamine interact with each of the other B vitamins in some way.  It's important to add a magnesium glycinate or chelate supplement as well.  Forms of Thiamine including Benfotiamine need magnesium to make those life sustaining enzymes.  (Don't use magnesium oxide.  It's not absorbed well.  It pulls water into the intestines and is used to relieve constipation.)   Molybdenum is a trace mineral that helps the body utilize forms of Thiamine.   Molybdenum supplements are available over the counter.  It's not unusual to be low in molybdenum if low in thiamine.   I do hope you will add the necessary supplements and try Benfotiamine again. Science-y Explanation of Thiamine Paradox: https://hormonesmatter.com/paradoxical-reactions-with-ttfd-the-glutathione-connection/#google_vignette
×
×
  • 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.