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

Cant Do It Anymore

bknutson

By bknutson
in Coping with Celiac Disease

Recommended Posts

ravenwoodglass Mentor
ravenwoodglass
Posted
You guys are all so sweet! You are the best. I am sitting here just crying my eyes out..

Thankyou so much. I had a biopsy the end of july. That is why I feel like such an idiot. I should be learning something and knowing and remembering things by now. I should be feeling better by now. I did get feeling somewhat better. I stopped losing weight, infact I feel like I may have gained a few pounds, which I dont want to do cause it didnt hurt me a bit to lose the weight cause I was fat anyway. I started to have more energy, less tiredness, brainfog etc. Then it just started again. Not to the extreme it was before, but still the pain. It is like I just cant get it right. I read the labels and then I have forgotten that I cant have this or that. I am just dumb. I am 48 and I feel like I am 90 as far as memory. ;) I dont want to feel sorry for myself cause there are so many people out there that have so many worse things than this. It is just frustrating that I am so dang stupid. My husband got me a palm pilot for christmas so I could put everthing in there that I need to know. Well ! What makes him think I can ever run the stupid thing. I cant! I have my own jars of stuff marked, my own toaster, and so on. How long does it take befor the pain goes away??? Oh Please where am I going wrong.. I just love you guys thanks so much.. And I am so sorry to Berneses.. Are you feeling better? What was your cause did you ever find out?

BK, Please don't give up. Also when you feel your worst emotionally try to remember that it may be the gluten that is causing you to feel so hopeless. Even the tiniest amount can make some of us extrememly depressed. But it will lift. It sounds like you are trying to be gluten free in a house that isn't, is there any way you can make the entire house gluten-free for a while to see if it helps? Some of us are soooo sensitive especeally at first. Check all your cosmetics and toiletries also, some doctors pooh-pooh this idea but for some of us we need to have the gluten-free products. Also if you have pets check their food also, I was poisoning myself for a long time by using the same can opener. You have gotten some great advice about checking for other intolerances too. I hope you get some relief soon.

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

Celiac.com Sponsor (A8-M):


darkangel Rookie
darkangel
Posted

When I get discouraged and feel like I'm doing something wrong, but can't figure out what... I eat very simply. I take my diet down to a few foods I'm absolutely positive hold no ill effects for me. If you try this, you may be surprised how much better you feel. Once your system's settled down a bit and you've gotten past that panicking, foggy feeling, you can start adding items back in to your diet and will be able to identify the culprit easier.

carriecraig Enthusiast
carriecraig
Posted

BK -

I know exactly how you are feeling. I was dx'd in June, and then started feeling better almost instantly after going gluten-free. Now it's been 6 months and I am still having D every day a couple of times. Come to find out, some the of medicines, hair/face products, foods I was using contain gluten. I've gone back and eliminated all of those things and am starting to feel even better. I also went for my 6 month endoscopy and the results were not good. My doctor said that I am not healing as well as he'd like to see. I too am very frustrated, and then to go to Christmas at 3 houses and have to see all that food, and be good and careful was so hard. I empathize, but I can say that I feel better everyday, so just hang in there...

Ursa Major Collaborator
Ursa Major
Posted

BK, I am 52 years old, and just found out in October that I have Celiac Disease. I also started to feel a ton better right away, and lost 20 lb in two months (my weight was ballooning out of control, for no apparent reason, since I was eating all 'healthy' stuff). But now I am feeling worse again, and actually had to take the codeine I used to take for fibromyalgia yesterday and the day before (and I'm tempted to take it today, but won't), because I got glutened somehow, and was in awful pain.

I was also feeling disheartened, because I am depressed, I haven't lost any more weight in a month, I have very little support here at home (and I am surrounded by gluten-eating people, who won't clean up after themselves in the kitchen), I am sick of having to cook every meal, even breakfast, from scratch if I want to eat, and I guess I started being careless due to too much holiday stress (but I don't ever purposely eat anything with gluten).

You're not stupid at all. It's so hard to get used to this diet, and to figure out all the hidden sources of gluten. The manufacturers hide them in so many things you'd never even think of! Plus, even things that don't even have anything containing gluten in their ingredient list, might have gone over a floured assembly line (to stop it from sticking to each other, like candy or french fries). The doctors are clueless and won't tell you any of that.

My memory is not too good either, I've been glutened for too long! I hope it will improve somewhat in the near future. And the palm pilot.......well, you just need somebody to show you how to use it. As Nancy said, try a couple of features at a time, you'll get the hang of it eventually.

laurelfla Enthusiast
laurelfla
Posted

i just want to say hooray for all of us! you all sound like a bunch of troopers, strong people who are getting through all of this, come what may.

as other people mentioned, this is a tough month for "our kind". :P but it's almost over! and for many of us, we survived our first gluten-free Christmas/holiday season this year! let's drink a toast!

Merika Contributor
Merika
Posted

Hi BK,

I don't know if this will make you feel better or worse :) Initially after going gluten-free i felt fabulously better. Everything got better for several months. Then I started to feel worse. And worse. And worse. I wasn't getting gluten. I don't know what it was. Additional food allergies were probably part of it.

But i have another theory too - at first my body felt so much better not getting gluten dumped into it that by comparison I felt fabulous. But then I adapted to the comparatively extra energy and such I gained from being gluten-free. Also, I *felt* parts of my body that had been almost numb or stiff for years (not that I knew at the time, I only noticed the difference after going gluten-free). I could *feel* how awful I felt, and how wrecked my insides were. Things were like this for about 9 months - I lost weight again, was depressed, had a hard time eating enough, and eventually wigged out and needed major help from family.

THEN :) things started to get better. It's now been one year since my "bottoming out" point, I look better, I am feeling better, and am doing more stuff. I am still not "healthy" or like I was "before celiac". I would have freaked even more if I hadn't witnessed my mom go through the same up-down-up recovery from celiac earlier.

Hope that helps,

Merika

Ursa Major Collaborator
Ursa Major
Posted

Merika, what you say makes so much sense! Besides the fact that I was on strong painkillers 24 hours a day for years, which obviously stopped me from feeling a lot of things. Now that I stopped taking them, I feel every little pain and twinge, that would be unnoticable before.

Also, now my other intolerances seem to make me sicker than before. But when I think about it, they are probably more noticeable, because my bowels are functioning better, and instead of things going right through me, I absorb the bad stuff as well as the good. And react worse to certain things as a result.

I will take that as a positive thing. ;)

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

Celiac.com Sponsor (A8-M):


CMCM Rising Star
CMCM
Posted
You guys are all so sweet! You are the best. I am sitting here just crying my eyes out..

Thankyou so much. I had a biopsy the end of july. That is why I feel like such an idiot. I should be learning something and knowing and remembering things by now. I should be feeling better by now. I did get feeling somewhat better. I stopped losing weight, infact I feel like I may have gained a few pounds, which I dont want to do cause it didnt hurt me a bit to lose the weight cause I was fat anyway. I started to have more energy, less tiredness, brainfog etc. Then it just started again. Not to the extreme it was before, but still the pain. It is like I just cant get it right. I read the labels and then I have forgotten that I cant have this or that. I am just dumb. I am 48 and I feel like I am 90 as far as memory. ;) I dont want to feel sorry for myself cause there are so many people out there that have so many worse things than this. It is just frustrating that I am so dang stupid. My husband got me a palm pilot for christmas so I could put everthing in there that I need to know. Well ! What makes him think I can ever run the stupid thing. I cant! I have my own jars of stuff marked, my own toaster, and so on. How long does it take befor the pain goes away??? Oh Please where am I going wrong.. I just love you guys thanks so much.. And I am so sorry to Berneses.. Are you feeling better? What was your cause did you ever find out?

I think a lot of it has to do with making peace with yourself about embarking on a different way of eating. Rather than focusing on all the things you can/should no longer eat, focus on creating a list of things you love and you CAN eat. For myself, I'm mainly eating fresh fruits and veggies, meats I cook myself, I find chocoate I can eat (big weakness), and the occasional cookies (I just discovered Pamela's spicy ginger cookies, which are fabulous by any standard!), and so on. Sometimes I feel frustrated, but then I figure I'm better off anyway because now I can drop those extra pounds I was sick of carrying around my middle! I've been working on letting go of food/eating as a comfort thing, and this has been positive for me. Food was too important to me before anyway, and now I eat to live rather than live to eat. There are other things in life to get enjoyment from, and besides, there are still a boatload of great things to eat that are gluten free! Just keep in mind that how you perceive all this is entirely within your control, and you can be unhappy about it and miserable, or you can find all the positives you can about it.

:P

jenvan Collaborator
jenvan
Posted
now I eat to live rather than live to eat.

I've also tried to take on the philosophy more--good advice I think! :)

Guest BERNESES
Guest BERNESES
Posted

Merika- My primary care physician (who is wonderful and supportive and believes that I have Celiac's even though the biopsy came back negative) said the exact same thing. You don't realize how awful you are feeling because you feel that way ALL the time. Then when you get the initial large amounts of gluten out of your system, you feel much better. But when you get even a minute amount of gluten in you, it feels that much worse because you actually know what it's like to feel good now. And you start to feel all the other things that were hurting or making you feel sick.

What you said really helped me because I am 10 months into the gluten-free diet and at the meltdown point too because I feel like this is just not going to get any beter. But then there are times of hope when I look back on things that I have been able to do lately that I wasn't able to do a year ago- like not sleep 8 hours DURING the day- and while those things may seem small to the "general population" they really are HUGE for us.

It's good to know that you saw your mom go through this and you went through it too (although I'm sorry that it's happened) because at least it makes me feel like there is a light at the end of the tunnel (and it's not the light of an oncoming train :P ).

BK- I am glad you started this post. Look how much we've all been able to support each other. Here's to health in 2006, Beverly

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. Jmartes71
      - Jmartes71 replied to Jmartes71's topic in Related Issues & Disorders
      20

      My only proof

      Thus has got to STOP , medical bit believing us! I literally went through 31 years thinking it was just a food allergy as its downplayed by medical if THEY weren't the ones who diagnosed us! Im positive for HLA-DQ2 which is first celiac patient per Iran and Turkey. Here in the States especially in Cali its why do you feel that way? Why do you think your celiac...
    2. knitty kitty
      - knitty kitty replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      44

      Supplements for those Diagnosed with Celiac Disease

      @Scatterbrain, Thiamine Vitamin B1 and amino acid Taurine work together. Our bodies can make Taurine from meats consumed. Our bodies cannot make Thiamine and must consume thiamine from food. Meat is the best source of B vitamins like Thiamine. Vegetarians may not make sufficient taurine since they don't eat meat sources of taurine...
    3. knitty kitty
      - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      20

      My only proof

      @Jmartes71, I went to Doterra's site and had a look around. The Doterra TerraZyme supplement really jumped out at me. Since we, as Celiacs, often have digestive problems, I looked at the ingredients. The majority of the enzymes in this supplement are made using black mold, Aspergillus! Other enzymes are made by yeast Saccharomyces! Considering...
    4. Scott Adams
      - Scott Adams commented on Scott Adams's article in Additional Concerns
      2

      Gluten Transfer from Biodegradable Tableware: What a New Study Found and Why It Matters (+Video)

      Thanks for mentioning this, and here is an older article on the topic:
    5. Scott Adams
      - Scott Adams commented on Scott Adams's article in Gluten-Free Grains and Flours
      18

      Cricket Flour Makes Really Good Gluten-Free Bread

      Your concern about certified gluten-free cricket powder is completely valid, as cross-contamination in both feedstock and processing is a real issue. Currently, the availability of certified gluten-free options is limited, but brands like Chapul and Entomo Farms, which I believe have offered products processed in dedicated facilities and labeled gluten-free...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,541
    • Most Online (within 30 mins)
      7,748
    Sally Garber
    Newest Member
    Sally Garber
    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

    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      Thus has got to STOP , medical bit believing us! I literally went through 31 years thinking it was just a food allergy as its downplayed by medical if THEY weren't the ones who diagnosed us! Im positive for HLA-DQ2 which is first celiac patient per Iran and Turkey. Here in the States especially in Cali its why do you feel that way? Why do you think your celiac? Your not eating gluten so its something else.Medical caused me depression. I thought I was safe with my former pcp for 25 years considering i thought everything I went through and going through will be available when I get fired again for health. Health not write-ups my health always come back when you're better.Im not and being tossed away at no fault to my own other than shitty genes.I was denied disability because person said he didn't know how to classify me! I said Im celiac, i have ibs, hernia, sciatica, high blood pressure, in constant pain have skin and eye issues and menopause intensified everything. With that my celiac nightmare began to reprove my disregarded disease to a bunch of clowns who think they are my careteam when they said I didn't have...I feel Im still breathing so I can fight this so no body else has to deal with this nightmare. Starting over with " new care team" and waisting more time on why I think I am when diagnosed in 1994 before food eliminated from my diet. P.s everything i went through I did write to medical board, so pretty sure I will continue to have a hard time.
    • knitty kitty
      Supplements for those Diagnosed with Celiac Disease

      By knitty kitty · Posted

      @Scatterbrain, Thiamine Vitamin B1 and amino acid Taurine work together.  Our bodies can make Taurine from meats consumed.  Our bodies cannot make Thiamine and must consume thiamine from food.  Meat is the best source of B vitamins like Thiamine.   Vegetarians may not make sufficient taurine since they don't eat meat sources of taurine.  Seaweed is the best vegetarian source of taurine. Vegetarians may not consume sufficient Thiamine since few veggies are good sources.  Whole grains, legumes, and nuts and seeds contain thiamine.  Many of these sources can be hard to digest and absorb for people with Celiac disease.   You may find taking the forms of thiamine called Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) and a B Complex will give the benefits you're looking for better than taurine alone.  
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      @Jmartes71, I went to Doterra's site and had a look around.  The Doterra TerraZyme supplement really jumped out at me.  Since we, as Celiacs, often have digestive problems, I looked at the ingredients.  The majority of the enzymes in this supplement are made using black mold, Aspergillus!  Other enzymes are made by yeast Saccharomyces!  Considering the fact that Celiac often have permeable intestines (leaky gut syndrome), I would be very hesitant to take a product like this.  Although there may not be live black mold or yeast in the product, the enzymes may still cause an immune system response which would definitely cause inflammation throughout the body.   Skin, eyes, and intestines are all made from the same basic type of cells.  Your skin on the outside and eyes can reflect how irritated the intestines are on the inside.  Our skin, eyes, and intestines all need the same vitamins and nutrients to be healthy:  Vitamin A, Niacin B3 and Tryptophan, Riboflavin B2, Biotin B7, Vitamin C, and Omega Threes.  Remember that the eight B vitamins work together.  Just taking high doses of just one, vitamin like B12, can cause a deficiency in the others.  Taking high doses of B12 can mask a Folate B9 deficiency.  If you take B12, please take a B Complex, too.  Thiamine B1 can be taken in high doses safely without toxicity.  Thiamine is needed by itself to produce energy so every cell in the body can function, but Thiamine also works with the other B vitamins to make life sustaining enzymes and digestive enzymes.  Deficiencies in either Niacin, Vitamin C, or Thiamine can cause digestive problems resulting in Pellagra, Scurvy, and Gastrointestinal Beriberi.   If you change your diet, you will change your intestinal microbiome.  Following the Autoimmune Protocol Diet, a Paleo diet, will starve out SIBO bacteria.  Thiamine keeps bacteria in check so they don't get out of control as in SIBO.  Thiamine also keeps MOLDS and Yeasts from overgrowth.   Menopause symptoms and menstrual irregularities are symptomatic of low Vitamin D.   Doctors are not as knowledgeable about malnutrition as we need them to be.  A nutritionist or dietician would be more helpful.   Take control of your diet and nutrition.  Quit looking for a pill that's going to make you feel better overnight.  The Celiac journey is a marathon, not a sprint.   "Let food be your medicine, and let medicine be your food."
    • RUKen
      Are Lindt chocolate balls gluten free?

      By RUKen · Posted

      The Lindt (Lindor) dairy-free oat milk truffles are definitely gluten-free, and (last time I checked) so are the white chocolate truffles and the mint chocolate truffles. 
    • lmemsm
      Supplements for those Diagnosed with Celiac Disease

      By lmemsm · Posted

      I've used magnesium taurinate and magnesium taurate vitamins.  Didn't notice much of a difference when I used them.
×
×
  • 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.