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

Having A Poor Me Day

SharonF

Recommended Posts

SharonF Contributor
SharonF
Posted

Yes, it's great to be feeling better and not exhausted tired all the time, but man, why me? I just want to eat a piece of pizza. Or a bagel. And not those rice flour substitutes, which are just not as good. I just want a piece of Papa Johns pizza.

Grr.

/rant

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

Celiac.com Sponsor (A8-M):


KaitiUSA Enthusiast
KaitiUSA
Posted

Is it really that bad? I mean look at other things you could be suffering from. What about alot of people that don't even have food to eat? Does it really matter that we can't have this crap? We can have food that tastes just as good and won't hurt us.

For everything with gluten there is something without it too.

There are bagels, etc..that are just as good that are gluten free

Think about it ...it could be worse.

There is a lady we know who is 41 I believe and she is a cancer survivor. Well she just found out not only did it come back but it spread to her liver as well. She has 3 young kids....6, 3, and 1. Looking at those situations really hits me hard...I have no right to complain..I have been so blessed.

I hope you feel better, I know how those days are..I had a lot of them when I first was dianosed.

Wandering Hermit Contributor
Wandering Hermit
Posted

Yep, Kaiti is right, in the grand scheme of things celiac is not so bad. I have a friend with Ulcerative Colitis - yeah, he can eat bread and drink beer, but he will likely have to have his colon removed someday. I'd rather have this problem.

I have bad days too, so I totally sympathize. I walked by a pizza place a few days after going gluten-free and I almost strated crying from the smell.

The way I look at it, this wole thing is just an opportunity to make myself a better, mentally tougher person. I love challenges. Bring it on.

tarnalberry Community Regular
tarnalberry
Posted

This just means it's time to find a new "I must have some" food that is gluten-free. Think of the taste exploration this means! :-D

Emme999 Enthusiast
Emme999
Posted

Sharon,

I am sorry that you are having a rough day. I've had a lot of them myself lately.

We both know that there are a lot of other people who have it a lot worse and I don't think that either of us would be likely to change positions with burn victims or cancer patients or whatever. But *right now* hurts and I think it's okay to feel that.

I wish that I could be a nearby friend and we could go out on a screaming/ranting/damn-it-all rampage, but I'm not :( So, maybe you ought to do something that an old friend and I used to do when we came to struggles:

Make the maddest face you can, and then repeat: "I HATE my stupid life! I HATE my stupid life!" - do it until it gets you silly and you realize how dumb it sounds.

I'm certain you are a very intelligent person with countless beautiful qualities. Make a list of them. Make yourself feel better. Turn on your favorite music really loud and dance and sing your guts out.

But I don't think that denying yourself a little self-pity in the short-run is such a good idea. Just try to keep it short ;)

Honor yourself.

- Michelle

thomas3000 Rookie
thomas3000
Posted

Hey Kaiti,

I noticed you have graves disease...What are you doing about it? Did you know that gluten sensitivity and graves share the same genetic marker??I can steer you in the right direction if i'm aloud to post a website on here...It's a company that I've been working with...have a great day..

KaitiUSA Enthusiast
KaitiUSA
Posted

Hey~

The graves disease is in beginning stages so I am not on medication or anything yet. They are just monitoring it every couple months. What annoys me about it is that every test I have had done it has got worse so I'll probably have to get on meds at some point.

I know that thyroid disorders are common among celiacs. Do you have that as well? You can email me anytime as well....and yes you can post links on here :D

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

Celiac.com Sponsor (A8-M):


Carriefaith Enthusiast
Carriefaith
Posted
There is a lady we know who is 41 I believe and she is a cancer survivor. Well she just found out not only did it come back but it spread to her liver as well.
There are a lot of people suffering from cancer... I mean prayer lists at my church and bible studies are growing with more and more people that have cancer. It's really sad.

In my opinion, I think that we are lucky in many ways. (1) I mean this disease won't kill us as long as we stick to the diet. (2) We are forced to eat a lot of veggies and fruits and scientists are finding now that veggies + fruits like broccoli, cauliflower, cabbage, tomatoes, blueberries, and cranberries are helping to slow down, prevent, and/or stop cancer. Personally, before I got celiac, I hardley ate enough veggies and fruits, but know I have no choice! and it's only for the best. (3) we've all found a lot of nice people on this site!

I still have days where I wish that I could eat fast food but overall, I am happy with the gluten-free diet and all the yummy things we can eat.

ianm Apprentice
ianm
Posted

Yes it could be worse. All we have to do is not eat gluten and we can enjoy good health. I am more than happy to give up pizza so that I can finally feel alive. It is not a hard sacrifice to make. Eat pizza=feel like crap or Don't eat pizza=feel alive.

stef-the-kicking-cuty Enthusiast
stef-the-kicking-cuty
Posted
scientists are finding now that veggies + fruits like broccoli, cauliflower, cabbage, tomatoes, blueberries, and cranberries are helping to slow down, prevent, and/or stop cancer.

Hello Carrie,

did you find that on an internet page? If yes, would you give me the name? I'm very interested in that.

Hugs, Stef

KaitiUSA Enthusiast
KaitiUSA
Posted

I have heard as well from various sources that eating proper veggies/fruits etc. can help prevent cancer.

stef-the-kicking-cuty Enthusiast
stef-the-kicking-cuty
Posted

Hey Kaiti,

I heard that, too. It just sounded like if medaka ment that those fruits/vegetables are even helping more than normal fruits/vegetables.

Hugs, Stef

Carriefaith Enthusiast
Carriefaith
Posted

Hey stef_the_kicking_cuty, I am also very interested in this research. I have read/heard that broccoli, cauliflower, cabbage, blueberries and cranberries, and tomatoes have phytochemicals that help prevent cancer. I know people that do research on blueberries and cancer. I could ask for their journal article references if you are interested.

Here are some links from the net:

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

I personally think that a lot of cancer can be prevented by proper diet and exercise. There are a lot of things that can cause cancer that we cannot avoid in certain situations like second hand smoke for example. But I think that eating healthy and excerising should help reduce this risk.

I also try and buy as much orgainc food as possible and if I can't, I'll usually just wash the non-organic stuff very well. It's just that non-organic stuff may contain pesticide residues and if not washed proporly you could injest them which = bad.

Hope this helps.

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 Jmartes71's topic in Related Issues & Disorders
      8

      My only proof

      @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...
    2. Wheatwacked
      - Wheatwacked replied to Jmartes71's topic in Coping with Celiac Disease
      8

      Related issues

      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...
    3. NanceK
      - NanceK replied to Jmartes71's topic in Related Issues & Disorders
      8

      My only proof

      Hi…Just a note that if you have an allergy to sulfa it’s best not to take Benfotiamine. I bought a bottle and tried one without looking into it first and didn’t feel well. I checked with my pharmacist and he said not to take it with a known sulfa allergy. I was really bummed because I thought it would help my energy level, but I was thankful I was given...
    4. Wheatwacked
      - Wheatwacked replied to Scatterbrain's topic in Sports and Fitness
      4

      Feel like I’m starting over

      Hello @Scatterbrain, Are you getting enough vitamins and minerals. Gluten free food is not fortified so you may be starting to run low on B vitamins and vitamin D. By the way you should get your mom checked for celiac disease. You got it from your mom or dad. Some studies show that following a gluten-free diet can stabilize or improve symptoms...
    5. Scott Adams
      - Scott Adams replied to Kirita's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      Recovery from gluten challenge

      Hopefully the food she eats away from home, especially at school, is 100% gluten-free. If you haven't checked in with the school directly about this, it might be worth a planned visit with their staff to make sure her food is safe.
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,291
    • Most Online (within 30 mins)
      7,748
    DottieLyn
    Newest Member
    DottieLyn
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • 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
    • Wheatwacked
      Related issues

      By Wheatwacked · Posted

      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   
    • NanceK
      My only proof

      By NanceK · Posted

      Hi…Just a note that if you have an allergy to sulfa it’s best not to take Benfotiamine. I bought a bottle and tried one without looking into it first and didn’t feel well.  I checked with my pharmacist and he said not to take it with a known sulfa allergy. I was really bummed because I thought it would help my energy level, but I was thankful I was given this info before taking more of it. 
    • Wheatwacked
      Feel like I’m starting over

      By Wheatwacked · Posted

      Hello @Scatterbrain, Are you getting enough vitamins and minerals.  Gluten free food is not fortified so you may be starting to run low on B vitamins and vitamin D.   By the way you should get your mom checked for celiac disease.  You got it from your mom or dad.  Some studies show that following a gluten-free diet can stabilize or improve symptoms of dementia.  I know that for the 63 years I was eating gluten I got dumber and dumber until I started GFD and vitamin replenishment and it began to reverse.  Thiamine can get used up in a week or two.  Symptoms can come and go with daily diet.  Symptoms of beriberi due to Thiamine deficiency.   Difficulty walking. Loss of feeling (sensation) in hands and feet. Loss of muscle function or paralysis of the lower legs. Mental confusion. Pain. Speech difficulties. Strange eye movements (nystagmus) Tingling. Any change in medications? Last March I had corotid artery surgery (90 % blockage), and I started taking Losartan for blood pressure, added to the Clonidine I was taking already.  I was not recovering well and many of my pre gluten free symptoms were back  I was getting worse.  At first I thought it was caused a reaction to the anesthesia from the surgery, but that should have improved after two weeks.  Doctor thought I was just being a wimp. After three months I talked to my doctor about a break from the Losartan to see if it was causing it. It had not made any difference in my bp.  Except for clonindine, all of the previous bp meds tried had not worked to lower bp and had crippling side effects. One, I could not stand up straight; one wobbly knees, another spayed feet.  Inguinal hernia from the Lisinopril cough.  Had I contiued on those, I was destined for a wheelchair or walker. She said the symptoms were not from Losartan so I continued taking it.  Two weeks later I did not have the strength in hips and thighs to get up from sitting on the floor (Help, I can't get up😨).  I stopped AMA (not recommended).  Without the Losartan, a) bp did not change, after the 72 hour withdrawal from Losartanon, on clonidine only and b) symptoms started going away.  Improvement started in 72 hours.  After six weeks they were gone and I am getting better.  
    • Scott Adams
      Recovery from gluten challenge

      By Scott Adams · Posted

      Hopefully the food she eats away from home, especially at school, is 100% gluten-free. If you haven't checked in with the school directly about this, it might be worth a planned visit with their staff to make sure her food is safe.
×
×
  • 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.