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

Holiday Blues


Serielda

Recommended Posts

Serielda Enthusiast

I hate making posts like this one but after hearing some recent news it has made me feel really down. I can't afford to be down as I have a lot of things I need to learn for work, but I can't seem to shake right now feeling woe is me. I recently learned two former acquaintances just got their first house and My husband and I are still renting an apartment. Granted it's a very nice one but it makes me feel down. Second still feeling angry I can't be a vegan. Dr.s told me due to all the grains in a vegan diet, no due to me still healing and felt it would be safer having me go grain free on top of gluten free. I have bills out the yin yang due to getting diagnosed. I know some would say improving my health is better and one thing at a time but it still doesn't take the omg why is this all happening to me go away. I would just love for once a string of awesome things of the good variety to happen for me. I know one of the best things did happen was finding out I was not a hypochondriac and that what is wrong is treatable before seriously bad and sad things happened worse than it could have been.

I guess the thanksgiving holiday and spending it around the idiots on my hubby's side of the family didn't help since I had to sound like a broken record on why I couldn't eat anything there politely also didn't help. I know I'm still new and stuff and they are too, but ''Ello ever hear of Google? My father is their age and he knows how to google crap, at least I had awesome stuffs at home that wouldn't make me sick. Was anyone else's first holiday season after diagnosis this depressing?

On a positive note I just realized I'm no longer living in that really crazy neighborhood that used to flip me out with all the bad things that went on there and my current home is much calmer.


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



Celiac.com Sponsor (A8-M):



nvsmom Community Regular

(((Hugs)))

StephanieL Enthusiast

i am not telling you to disregard dr.'s orders outright. Do you think it would be possible to speak to a nutritionist? I haven't had a lot of luck with them myself but perhaps you can find someone who could help you manage the vegan thing and Celiac.  You can get plenty of protein with plants, nuts and soy if you wanted to and are really committed to staying vegan.  It may take some research but I know people with far more restrictions that have managed that way of eating and stayed healthy.

BlessedMommy Rising Star

Does the doctor have any evidence that cutting out grains and beans will help you to heal?

mamaw Community Regular

Holidays  in general  can  be  pretty depressing then  throw  in a new illness....  hugs  to you.....Please  don't dwell  in what  others  have, your  turn & time  will come...you don't  know  the others  money  situation  or  their   thought  process..they  may not  be  ready for a new home  & may end  up  biting  off  more than  they  have  funds to pay for.. ( that is just  an example)...sometimes when  people  rush into decisions  , big  decisions  to  fast  they  loose  big time.... so it is  better  to  do  lots  of  planning & be prepared  for  future events.....

You  will  catch up at  the right  time.....be happy  that  you are  healing  have a  great partner & are in a safe place...with  gluten-free food... I  always  prepare  gluten-free  food  to take to any  invite...

It  is  hard  for  us to  understand  this   celiac  let  alone  others  who  have  no  clue or  issues.. I find  that  if  it  isn't  effecting  them then they  don't  truly care...Just  a  normal  thing although  it  hurts at times...For  instance  do  you  care  about  MS or  a brain  tumor  if  no one  around  you  has it? yes, you may  care  but  not  enough  to  know  everything about  it...so  don't  be  to hard  on  people  who  lack knowledge  about  celiac  when  they don't  have  it...

The  good  news  is  you  found  you have  many things to be thankful for... And  may health & happiness  follow  you through  this  holiday season....

hugs

Serielda Enthusiast

To address the mentions of nutritionists yes they also agreed on the no grains period thing. I know I've shown some improvements since the changes, which I know positive improvements should trump over a lot, but I still find myself lashing out about it. I feel that helping with a cause I wanted to support strongly was stolen from me by ignorance. like I said very angry about all of this.

mamaw Community Regular

sending  more hugs!  You  are  still all good  when it  comes  to celiac....the feelings  you  have  are  normal   to celiac,  I  think most  of us  have  been  there our   first  few  months  into  recovery....sadness,  anger, denial, an  emotional  roller  coaster  for  many....some  it  takes  much longer  to  find  peace ... the good  thing it  does  happen...


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



Celiac.com Sponsor (A8-M):



StephanieL Enthusiast

If you look at your diet, what are you eating in large amounts that you would need a replacement for to be vegan? Perhaps people here can help with suggestions that may help you return to being vegan and that may help some of the anger you are feeling?

((hugs))

BlessedMommy Rising Star

Quinoa, amaranth, wild rice, and buckwheat aren't grains. Is including them in your diet for more variety an option for you? 

Serielda Enthusiast

Blessed, trust me when I asked several sources that did give me a reasonable answer. I tend to agree with you, however they all seem in agreement . So I am trying things their way. After all they specialize in what they do. I understand my constant doubt is not cool as I have seen improvements, and my minor sarcasm about some requests would be like them trying to do my job which is helping run a medium to large IT network they know nil about but trust those who know IT to run. Once I had that analogy I was like ok, they know food and medicine so let's give a benefit of doubt they are doing things right. Since I do feel better.

Serielda Enthusiast

StephanieL, post extreme diet make over there was a freaking ton of rice and veggies and I admit to eating a lot of gluten free soy fake meat things. Cooking at night fell on hubby as I work overnights. I admit he is a trooper and serious keeper. When I was told no gluteny things he stopped eating them . He stated if I couldn't have some of my faves he wasn't gonna have them either as it isn't cool to eat in front of peeps what they can't have.

cap6 Enthusiast

Rice, quinoa are in the grain family and they may not work for you right now as they can be difficult for some people to digest.  Perhaps some time down the line as your gut heals you may be able to reintroduce them into your diet if you wish.  My niece is a vegan and know she eats tons of veggies.  Is fish an option at all for you.  That's a tough one as even beans for protein can be very difficult to digest.    

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 Scatterbrain's topic in Sports and Fitness
      6

      Feel like I’m starting over

    2. - bobadigilatis replied to Larzipan's topic in Related Issues & Disorders
      32

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

    3. - cristiana replied to Scatterbrain's topic in Sports and Fitness
      6

      Feel like I’m starting over

    4. - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      8

      My only proof


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,299
    • Most Online (within 30 mins)
      7,748

    Philbin
    Newest Member
    Philbin
    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
      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
      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
      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
      @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
    • Wheatwacked
      Your goal is not to be a good puppet, there is no gain in that. You might want to restart the ones that helped.  It sounds more like you are suffering from malnutrition.  Gluten free foods are not fortified with things like Thiamine (B1), vitamin D, Iodine, B1,2,3,5,6 and 12 as non-gluten free products are required to be. There is a Catch-22 here.  Malnutrition can cause SIBO, and SIBO can worsen malnutrition. Another possibility is side effects from any medication that are taking.  I was on Metformin 3 months before it turned me into a zombi.  I had crippling side effects from most of the BP meds tried on me, and Losartan has many of the side effects on me from my pre gluten free days. Because you have been gluten free, you can test and talk until you are blue in the face but all of your tests will be negative.  Without gluten, you will not create the antigen against gluten, no antigens to gluten, so no small intestine damage from the antigens.  You will need to do a gluten challange to test positive if you need an official diagnosis, and even then, no guaranty: 10 g of gluten per day for 6 weeks! Then a full panel of Celiac tests and biopsy. At a minimum consider vitamin D, Liquid Iodine (unless you have dermatitis herpetiformis and iodine exasperates the rash), and Liquid Geritol. Push for vitamin D testing and a consult with a nutritionist experienced with Celiack Disease.  Most blood tests don't indicate nutritional deficiencies.  Your thyroid tests can be perfect, yet not indicate iodine deficiency for example.  Thiamine   test fine, but not pick up on beriberi.  Vegans are often B12 deficient because meat, fish, poultry, eggs, and dairy are the primary souces of B12. Here is what I take daily.  10,000 IU vitamin D3 750 mg g a b a [   ] 200 mg CoQ10 [   ] 100 mg DHEA [   ] 250 mg thiamine B1 [   ] 100 mg of B2 [   ] 500 mg B5 pantothenic acid [   ] 100 mg B6 [   ] 1000 micrograms B12 n [   ] 500 mg vitamin c [   ] 500 mg taurine [   ] 200 mg selenium   
×
×
  • 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.