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

Epic Story - Any Advice Appreciated


kmccormick61583

Recommended Posts

kmccormick61583 Newbie

:) hope you're having a good day Kyle! I too feel like people understand me, my worries, my concerns, my psychoses :) here better than anywhere else! I personally feel like this is the best online community I've ever encountered.

On the parent note, I have one stellar parent and one despicable parent...we don't (unfortunately) get to choose our parents or our genes (bummer!)...I spent plenty of time in my twenties and thirties upset about the parenting (or lack thereof) I'd received (somehow I purged that from my system in my thirties and I'm glad I did!). I was (am) an awesome kid! I get the sense from you too that you are a gem! It's hard to be so grown up all the time, but all the hard work you're doing and all the responsibility you're taking in finding your own path to health will serve you well in the long term.

I think you're impressive!!! Cheering for you!

Thankyou...made my day....its just so hard doing this alone...and not having the resources available to get on top of this like i should.....

thankyou for the kind words....def appreciated....

also im having a bit of a problem finding a complete b vitamin that doesnt have some form of soy in it.... :(

b1 and b6 only....and i added zinc just to see what happens....the only bad thing i can think of is over doing it....i stopped the iron.... casue of metalic taste in mouth...it has since subsided.....

still getting wicked tracers when im super stressed......i feel there could be a connection here ...any good info on vitamin deficiencies and vision correlations or even someone who has experienced this themselves....please post

thanks again ...your words were nice to hear :)


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



Celiac.com Sponsor (A8-M):



tom Contributor

I didn't have actual tracing tracers but there were some peripheral vision flashy sparks for a while. It was on & off but hasn't happened in a couple yrs now.

I found photopsia sounded similar, but was full field of vision.

squirmingitch Veteran

Kyle, I needed a multi vitamin that did not contain soy. Also I had to have one that did not contain iodine or dairy (b/c of the iodine) or iodized salt because I have dh & the iodine really makes it flare. I searched far & wide. I came up with this: Solgar brand --- their "Vitamins Only" multi. No sugar, starch, salt, yeast, wheat, soy, gluten, dairy or iodine. I know Vitacost sells them online --- that's where I get them from. You can Google Solgar's website & see the stats or see the same a Vitacost.

kmccormick61583 Newbie

I didn't have actual tracing tracers but there were some peripheral vision flashy sparks for a while. It was on & off but hasn't happened in a couple yrs now.

I found photopsia sounded similar, but was full field of vision.

ya tom its very abnormal.....i never had vision problems before...this didnt start until the stress level went through the roof....about 2 weeks ago ....its good some days....worse at night....seems to be worse if i stare at the comp screen too long ( mines 32 inches lol ) def worse when my blood sugars are higher....im at a loss with it...it freaks me out :(

rosetapper23 Explorer

I take Co-Enzyme Vitamin B Complex by Country Life. That's really helped me, since my B vitamins were out of whack.

mamaupupup Contributor

Hey Kyle,

I've been thinking about the vision part. Definitely go to a good doctor. Even if you can't afford it, call the best doctor and be SUPER SUPER NICE. Tell them "I've been told that Dr. X is the best doctor to see and I have a very complex case he/she might be interested in. I really need help to figure this out and I think Dr. X is about the only one who could figure it out. I apologize in advance that I'm on xyz insurance. I have to tell you I am responsible financially and will make sure we can work out an arrangement for me to uphold my financial responsibility. That aside, I'm hoping I can see him/her on (name a day) this week. What time would be available that day?"

Okay, now to what I call, "Floaters." I have had floaters off and on for about a decade (note: my kids are newly diagnosed Celiac and I'm just figuring out I may be...after all these years...). I have no idea if floaters (wiggly things that are in my field of vision) are connected to Celiac or not. Here's what I've heard/noticed specifically for me over the years:

- Floaters appear when I'm dehydrated

- Floaters appear after I've exercised (usually in about an hour)

- Floaters appear when I'm in bright sunlight

Some thoughts:

- Are you drinking enough?

- Are your electrolytes balanced?

- Can you dim your computer screen? Can you brighten the room so the computer screen isn't the only bright light?

For now, see if you can get some basics balanced: blood sugar, water/electrolytes, sleep. I know you have 99 other things on your mind too...

:) Do what you need to do to get healthy: be persuasive, stretch the truth, be pushy, be demanding, charming, show up with a box of chocolates to the eye doctors, etc. It's your health and you're doing an amazing job. Sounds like vision is top of mind for you at the moment, so go tackle it. Keep us posted! Cheering, as always!

kmccormick61583 Newbie

Hey Kyle,

I've been thinking about the vision part. Definitely go to a good doctor. Even if you can't afford it, call the best doctor and be SUPER SUPER NICE. Tell them "I've been told that Dr. X is the best doctor to see and I have a very complex case he/she might be interested in. I really need help to figure this out and I think Dr. X is about the only one who could figure it out. I apologize in advance that I'm on xyz insurance. I have to tell you I am responsible financially and will make sure we can work out an arrangement for me to uphold my financial responsibility. That aside, I'm hoping I can see him/her on (name a day) this week. What time would be available that day?"

Okay, now to what I call, "Floaters." I have had floaters off and on for about a decade (note: my kids are newly diagnosed Celiac and I'm just figuring out I may be...after all these years...). I have no idea if floaters (wiggly things that are in my field of vision) are connected to Celiac or not. Here's what I've heard/noticed specifically for me over the years:

- Floaters appear when I'm dehydrated

- Floaters appear after I've exercised (usually in about an hour)

- Floaters appear when I'm in bright sunlight

Some thoughts:

- Are you drinking enough?

- Are your electrolytes balanced?

- Can you dim your computer screen? Can you brighten the room so the computer screen isn't the only bright light?

For now, see if you can get some basics balanced: blood sugar, water/electrolytes, sleep. I know you have 99 other things on your mind too...

:) Do what you need to do to get healthy: be persuasive, stretch the truth, be pushy, be demanding, charming, show up with a box of chocolates to the eye doctors, etc. It's your health and you're doing an amazing job. Sounds like vision is top of mind for you at the moment, so go tackle it. Keep us posted! Cheering, as always!

yes electrolytes are balanced tested at er... i drink water all day.....sleep that is another thing.....i was severely sleep deprived up until the point that the vision changed then started gluten free but was still having sleep problems due to stress and anxiety over all this...and i was workingn ights so i was/still am up lateeeee.....also, the whole "everyone telling me i was crazy and it was all in my head" before i went into a diabetic come a yearish ago.....that really messed with me .....so my train of though is the same here....they say im ok....but i still feel weird....now lemme say....leaps and bounds different.....ive never had this much energy...getting through entire dayz without wanting/needing to take a nap is fantastic....

btw i dont have health insurance.....im going to do everything but rob a bank this month to scrape up enough cash to get it...found a state sponsored program that will cover me for health but its insanely expensive...

and i quit my job with a quickness once i started having allergic reactions to work after i had started to go gluten free ( worked in a restaurant , believe flour in air may have been problem )...was having asthma attacks after work and sinus problems that normally i would have ran to doc for and gotten antibiotics but now believe it was an allergic reaction the whole time :(

its my experience that with doctors and offices if you have insurance they will do anything for you as long as you can pay.....when i was dealing with the whole " i have a bone infection but really its diabetes fiasco" we did the whole charming...demanding....we will do anything stuff and it worked....they just didnt figure out the problem....

but i dont have insurance and all i get are referrals to health care clinics....however i am going to go to one to have vitamin levels checked because that would show what i really need to get cracking on.....

i think the only reason my doc still sees me now is so i dont sue him for not checking bloodsugar levels the 8 million times he took blood from me from 24-26 years of age....and always said " its allergies" :(


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



Celiac.com Sponsor (A8-M):



kmccormick61583 Newbie

also money is super tight and i cant even afford a 100 dollar ish payment even to just see a new doctor if they agreed....

que ( rock and a hard place )

but again as always thanx for the advice and support pup

i am really grateful for all the feedback :)

kyle

mamaupupup Contributor
:) yes, rock and a hard place for sure! Hang in there! And, you are smart to leave a toxic environment (the restaurant). That must have been a difficult decision to make. Keep making the difficult, smart, healthy decisions you are.
kmccormick61583 Newbie

just thought id post today.....

noticed that after a few weeks of this new diet a patch of eczema on my arm has all but vanished?!?!?! wow

also just realized why i was having some burping gassy problems after eating some foods...soyyyyyy

omg my gluten free cereal had it gluten free cereal bars had it......jesus....this is hard stuff

any suggestions for good carbs that will maintain my blood sugar when i start going low? ive found fruits are good but the sugars burn way too fast

oh and the bread i was using for lunches had egg whites in them

again ive taken out all the major food allergies and am on a slight learning curve....i swear i read these boxes.....but maybe i was just happy to have food actually sit in my stomach :)

any advice appreciated....

again thankx alot folks

kyle

pricklypear1971 Community Regular

Nuts, meats, legumes, vegetables.

Stay away from anything high in sugar without cutting it with a protein/fat.

rosetapper23 Explorer

Nut butters perhaps?

kmccormick61583 Newbie

Hey Kyle,

I've been thinking about the vision part. Definitely go to a good doctor. Even if you can't afford it, call the best doctor and be SUPER SUPER NICE. Tell them "I've been told that Dr. X is the best doctor to see and I have a very complex case he/she might be interested in. I really need help to figure this out and I think Dr. X is about the only one who could figure it out. I apologize in advance that I'm on xyz insurance. I have to tell you I am responsible financially and will make sure we can work out an arrangement for me to uphold my financial responsibility. That aside, I'm hoping I can see him/her on (name a day) this week. What time would be available that day?"

Okay, now to what I call, "Floaters." I have had floaters off and on for about a decade (note: my kids are newly diagnosed Celiac and I'm just figuring out I may be...after all these years...). I have no idea if floaters (wiggly things that are in my field of vision) are connected to Celiac or not. Here's what I've heard/noticed specifically for me over the years:

- Floaters appear when I'm dehydrated

- Floaters appear after I've exercised (usually in about an hour)

- Floaters appear when I'm in bright sunlight

Some thoughts:

- Are you drinking enough?

- Are your electrolytes balanced?

- Can you dim your computer screen? Can you brighten the room so the computer screen isn't the only bright light?

For now, see if you can get some basics balanced: blood sugar, water/electrolytes, sleep. I know you have 99 other things on your mind too...

:) Do what you need to do to get healthy: be persuasive, stretch the truth, be pushy, be demanding, charming, show up with a box of chocolates to the eye doctors, etc. It's your health and you're doing an amazing job. Sounds like vision is top of mind for you at the moment, so go tackle it. Keep us posted! Cheering, as always!

ok so i just got back from eye eye doctor.....a real one....somehow got into on this morning and guess what?....no abnormalities...no damage to eyes due to diabetes ...need reading glasses.....so thats most likley part of the problem.......

just thought id share.....still having wierd vision problems but not to extremes....i almost think it was due to stress and high glucose and im evened out now ....maybe it will just take time.....

thankx for all the help guys....if anyone knows a cheap way to find out if your anemic or if you are severly deprived of certain vitamins that could help?

thanx

kyle

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,782
    • Most Online (within 30 mins)
      7,748

    BH1951
    Newest Member
    BH1951
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)

    • There are no registered users currently online

  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • nanny marley
      Hi I've been told I need a MRI on my bowels , I was booked for a colonoscopy, but because of my sever back issues and trapped nerve it can't be done , the nurse told me I will have to have a manitol drink a hour before the scan , I'm just a bit worried has I have issues with sweeteners like even a little,  I get a weird throat and ears and I've read it is a similar substance , not sure if anyone has had one of these scans or could give me some advise on the drink prep thanks in advance 😄
    • Colleen H
      Ok thank you.  Me either 
    • Colleen H
      Hi all ! Can a celiac attack be so intense that it causes your entire body to work in reverse? Meaning really bad pain,  neuropathy and muscle,  jaw pain,  the stomach issues , Horrible anxiety and confusion??  I had a Tums and you would think I ate poison. My jaw and stomach did not like it . Not the norm for me. Things that are simple are just out of control. Anyone ever have this happen??  I'm trying to figure out what I ate or did to bring on a celiac like attack. I had an idea before but yesterday I didn't have any gluten unless it was in a medication ?! Any positive suggestions ??  Thank you 
    • Scott Adams
      The following two lists are very helpful for anyone who is gluten sensitive and needs to avoid gluten when shopping. It's very important to learn to read labels and understand sources of hidden gluten, and to know some general information about product labelling--for example in the USA if wheat is a possible allergen it must be declared on a product's ingredient label like this: Allergens: Wheat.      
    • trents
      Tammy, in the food industry, "gluten free" doesn't mean the same thing as "no gluten". As Scott explained, the FDA (Food and Drug Administration) allows food companies to use the "gluten-free" label as long as the product does not contain more than 20 ppm (parts per million) of gluten. This number is based on studies the FDA did years ago to determine the reaction threshold for those with celiac disease. And the 20 ppm figure works for the majority of celiacs. There are those who are more sensitive, however, who still react to that amount. There is another, stricter standard known as "Certified Gluten Free" which was developed by a third party organization known as GFCO which requires not more than 10 ppm of gluten. So, when you see "GFCO" or "Certified Gluten Free" labels on food items you know they are manufactured with a stricter standard concerning gluten content. Having said all that, even though you may read the disclaimer on a food item that says the spices may contain wheat, barley or rye (the gluten grains), you should be able to trust that the amount of gluten the spices may contain is so small it allows the total product to meet the requirements of gluten free or certified gluten free labeling. I hope this helps.
×
×
  • 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.