Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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
kmccormick61583
Posted
  • Author

:) 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
tom
Posted

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
squirmingitch
Posted

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
kmccormick61583
Posted
  • Author

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
rosetapper23
Posted

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
mamaupupup
Posted

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
kmccormick61583
Posted
  • Author

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
kmccormick61583
Posted
  • Author

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
mamaupupup
Posted
:) 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
kmccormick61583
Posted
  • Author

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
pricklypear1971
Posted

Nuts, meats, legumes, vegetables.

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

rosetapper23 Explorer
rosetapper23
Posted

Nut butters perhaps?

kmccormick61583 Newbie
kmccormick61583
Posted
  • Author

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.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      128,383
    • Most Online (within 30 mins)
      7,748
    haleyspurlock1
    Newest Member
    haleyspurlock1
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.9k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Negative biopsy and seeking doctor recs in Los Angeles

      By trents · Posted

      Welcome to the forum, @englishbunny! Did your celiac panel include a test for "Total IGA"? That is a test for IGA deficiency. If you are IGA deficient, other IGA test resultls will likely be falsely low. Were you by any chance already practicing a reduced gluten free diet when the blood draw was done?
    • englishbunny
      Negative biopsy and seeking doctor recs in Los Angeles

      By englishbunny · Posted

      I'm upset & confused and really need help finding a new gastro who specializes in celiac in California.  Also will welcome any insights on my results. I tested with an isolated positive for deamidated IGA a few months ago (it was 124.3, all other values on celiac panel <1.0), I also have low ferritin and Hashimotos. Mild gastro symptoms which don't seem to get significantly worse with gluten but I can't really tell... my main issues being extreme fatigue and joint pain. The celiac panel was done by my endocrinologist to try and get to the bottom of my fatigue and I was shocked to have a positive result. Just got negative biposy result from endoscopy. Doctor only took two biopsies from small intestine (from an area that appeared red), and both are normal. Problem is his Physician's Assistant can't give me an answer whether I have celiac or not, or what possible reason I might have for having positive antibodies if I don't have it. She wants me to retest bloods in a month and says in the meantime to either "eat gluten or not, it's up to you, but your bloodwork won't be accurate if you don't" I asked if it could be I have early stage celiac so the damage is patchy and missed by only having two samples taken, and she said doctor would've seen damaged areas when performing endoscopy (?) and that it's a good sign if my whole intestine isn't damaged all over, so even if there is spotty damage I am fine.  This doesn't exactly seem satisfactory, and seems to be contrary to so much of the reading and research I have done. I haven't seen the doctor except at my endoscopy, and he was pretty arrogant and didn't take much time to talk. I can't see him or even talk to him for another month. I'm really confused about what I should do. I don't want to just "wait and see" if I have celiac and do real damage in the meantime. Because I know celiac is more that just 'not eating bread' and if I am going to make such a huge lifestyle adjustment I need an actual diagnosis. So in summary I want to find another doctor in CA, preferably Los Angeles but I don't care at this stage if they can do telehealth! I just need some real answers from someone who doesn't talk in riddles. So recommendations would be highly welcomed. I have Blue Shield CA insurance, loads of gastros in LA don’t take insurance at all 😣
    • trents
      Oats gluten free?

      By trents · Posted

      Okay, Lori, we can agree on the term "gluten-like". My concern here is that you and other celiacs who do experience celiac reactions to other grains besides wheat, barley and rye are trying to make this normative for the whole celiac community when it isn't. And using the term "gluten" to refer to these other grain proteins is going to be confusing to new celiacs trying to figure out what grains they actually do need to avoid and which they don't. Your experience is not normative so please don't proselytize as if it were.
    • Levi
      My Adult daughter is blaming me for her "possible" Celiac disease.

      By Levi · Posted

      When I was first Dg’d I researched like mad. One thing I remember from then, which may have changed with advancement in medical science, is that Coeliac is a first generation disease which means either you or your husband need be Coeliac for your daughter to have inherited it. Far as I know, and I’m not a scientist just a victim, the amount of gluten (wheat, rye, or barley) one consumes does not cause a person to contract Coeliac Disease. So if neither of you as her biological parents have Coeliac then your daughter cannot pass any blame should she contract this horrific disease.     It’s humbling, and sometimes I believe GOD allows such as these autoimmune diseases for those who need it most. 
    • Lori Lavell
      Oats gluten free?

      By Lori Lavell · Posted

      The body reacts to all grain proteins in all grains from my observation. Call it Gluten, Gliadin, which is what they test for commonly, however, I am Celiac and react with dermatitis herpetiformis to corn and the glutenous protein in it is called Zein. They only test for Gliadin. Testing needs to be updated in my opinion. It only take a small parts per million to continuously create systemic inflammation. This is not productive to healing and all grains contain some for gluten like substance. It's called Molecular Mimicry.
×
×
  • Create New...