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

I Laid It All Out There For My Mom


JerryK

Recommended Posts

JerryK Community Regular

I


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



Celiac.com Sponsor (A8-M):



Lisa Mentor

Good for you Jerry. You're converting the world, one personal at a time.!!

How's your brother doing? Is he still trying the gluten free diet.

Lisa

JerryK Community Regular
Good for you Jerry. You're converting the world, one personal at a time.!!

How's your brother doing? Is he still trying the gluten free diet.

Lisa

As of yesterday he was...AND he was telling my mom how much it has helped his gastro symptoms.

He's lucky, since he's my genetic clone, he doesn't need to pay for testing...he can just sponge off of

my results;)

Lisa Mentor

Hey, you can send him a bill for 50% of the cost. Don't let him get off that easy <_<:)

kbabe1968 Enthusiast

Whew....I got worried about you! Hadn't seen ya around for a few days and was thinking of your postings last week.

Glad you talked with your mom and she was receptive.

Keep on keepin on...

:)

JerryK Community Regular

The gene test will be interesting.

Hope I don't show up as being missing a bunch of chromosome's, or worse

have the genetic makeup of a farm animal...

"We're sorry sir, but we're unable to complete the test as your DNA seems similar

to that of a bovine". :lol:

Viola 1 Rookie
The gene test will be interesting.

Hope I don't show up as being missing a bunch of chromosome's, or worse

have the genetic makeup of a farm animal...

"We're sorry sir, but we're unable to complete the test as your DNA seems similar

to that of a bovine". :lol:

:lol::lol: Wouldn't that be a shocker!

I agree, charge your brother half, it's for his benifit too :rolleyes:


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



Celiac.com Sponsor (A8-M):



chrissy Collaborator

jerry----even if you are genetic clones, it still doesn't mean you BOTH have celiac.(though it does sound most likely) that being said, i have identical twin daughters and they both have celiac disease. it sure is nice that your mom was so receptive to the idea of celiac disease rather than blowing you off. my family was pretty good about it, too. when my girls were diagnosed, 2 of my sisters and my mother all got tested for celiac.(all negative) one sister has not tested, and my DIABETIC brother and WHEAT ALLERGIC father have not been tested. i think that when we get our gene tests back i might be able to convince them to test if it is me that carries the gene, in fact, the testing might even be paid for by the university of california.

happygirl Collaborator

Jerry, I thought you were on the gluten free diet at the moment? And you are having the Celiac bloodwork done?

The two options are:

positive: means you are definitely a Celiac

negative: doesn't mean you are or aren't a Celiac, since gluten isn't being consumed at test time

Fiddle-Faddle Community Regular

Jerry, you need to compile your posts here into a book about the journey to celiac diagnosis! You have a great talent for writing, you know.

darlindeb25 Collaborator

That's great that your mom is understanding Jerry, it doesn't always happen that way. My mom already had one child with this disease, so me saying I do too, wasn't a surprise. Yet she does question my other intolerance's only because my sister doesn't have them, which I find aggravating at times. I also have neuropathy and I am guessing she is questioning that too. She sent me a letter last week telling me that too much Vit B6 can cause neuropathy, so I am guessing she doesn't think I know what I am doing. I only get normal amounts of B6, I take more B12. Yet, my neuropathy is doctor diagnosed and she still thinks I'm nuts. Well, as soon as my sister realizes she has neuropathy too, then mine will be validated. I know she has it, just in what she is saying.

I think it is great that your family is listening to you, good work!

gfp Enthusiast
The gene test will be interesting.

Hope I don't show up as being missing a bunch of chromosome's, or worse

have the genetic makeup of a farm animal...

"We're sorry sir, but we're unable to complete the test as your DNA seems similar

to that of a bovine". :lol:

LOL, when I got a blood test on haemoglobin effiency I was told it was like a Llama....

JerryK Community Regular
Jerry, I thought you were on the gluten free diet at the moment? And you are having the Celiac bloodwork done?

The two options are:

positive: means you are definitely a Celiac

negative: doesn't mean you are or aren't a Celiac, since gluten isn't being consumed at test time

No, I haven't been Gluten Free for about a month now I think. I abandoned gluten-free when I decided to get the blood test. My body is certainly still reacting strongly to gluten, whether or not I have positive

bloodwork...I dunno. I ordered the gene test from Enterolab also. Between these two additional tests, I should have a better idea. Both positive....Celiac. Both negative..just gluten sensitive....

Gene test only positive....perhaps Celiac....

happygirl Collaborator

Jerry :)

Good! After all you have gone through, I would hate for you to get inaccurate testing :)

JerryK Community Regular
jerry----even if you are genetic clones, it still doesn't mean you BOTH have celiac.(though it does sound most likely) that being said, i have identical twin daughters and they both have celiac disease. it sure is nice that your mom was so receptive to the idea of celiac disease rather than blowing you off. my family was pretty good about it, too. when my girls were diagnosed, 2 of my sisters and my mother all got tested for celiac.(all negative) one sister has not tested, and my DIABETIC brother and WHEAT ALLERGIC father have not been tested. i think that when we get our gene tests back i might be able to convince them to test if it is me that carries the gene, in fact, the testing might even be paid for by the university of california.

I suspect, as my mom heard me talk about it, she saw a lot of herself in my description. Mom lost all

her teeth in her early 20s...as she called it "just bad teeth, and back then you couldn't afford to have them fixed". Well, mom was 4'11" at her maximum, lost her teeth and now ON her 70th birthday has

the classic rash(In my non doctorly opinion). I just think she realizes it makes sense.

JerryK Community Regular
Jerry, you need to compile your posts here into a book about the journey to celiac diagnosis! You have a great talent for writing, you know.

Thanks, actually I didn't really realize that. I just type what's in my head(well some of it).

Is there an easy way to see and/or print all of your posts, chronologically?

Nancym Enthusiast

Do you think your Mom would try the diet? I found my elderly parents just didn't have any interest in changing their diets, even if it would prolong their lives. But their mental faculties weren't what they once were too, it was probably too confusing for them.

Viola 1 Rookie
Do you think your Mom would try the diet? I found my elderly parents just didn't have any interest in changing their diets, even if it would prolong their lives. But their mental faculties weren't what they once were too, it was probably too confusing for them.

My doctor told my Mom that he had no doubt what so ever that she had Celiac (4ft. 8in. and all the symptoms) but at over 80 she has no intention on changing her diet. Right now she is on a kidney diet as well, and doesn't stick to that. However, she isn't eating much of anything right now and spends most of her time sleeping. So, she's not in good shape :(

How ever, I suggested she try the diet years ago and she wouldn't even then. I'm not sure it's confusion, so much as hating change of any kind.

JerryK Community Regular
Do you think your Mom would try the diet? I found my elderly parents just didn't have any interest in changing their diets, even if it would prolong their lives. But their mental faculties weren't what they once were too, it was probably too confusing for them.

Mom is quite a vibrant 70, so I think she might try it, just to get rid of the rash. She's now waiting on the results of my genetic test, with interest.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,021
    • Most Online (within 30 mins)
      7,748

    maltawildcat
    Newest Member
    maltawildcat
    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

    • NanCel
    • sleuth
      He is not just a psychiatrist.  He is also a neuroscientist.  And yes, I have already read those studies.   I agree with benfotiamine.  This is short term while glutened/inflammation occurs.  As I had already mentioned, these symptoms no longer exist when this phase passes.  And yes, I know that celiac is a disease of malnutrition.  We are working with a naturopath.
    • knitty kitty
      Please do more research before you settle on nicotine. Dr. Paul New house is a psychiatrist.  His latest study involves the effect of nicotine patches on Late Life Depression which has reached no long term conclusions about the benefits.   Effects of open-label transdermal nicotine antidepressant augmentation on affective symptoms and executive function in late-life depression https://pubmed.ncbi.nlm.nih.gov/39009312/   I'm approaching the subject from the Microbiologist's point of view which shows nicotine blocks Thiamine B1 uptake and usage:   Chronic Nicotine Exposure In Vivo and In Vitro Inhibits Vitamin B1 (Thiamin) Uptake by Pancreatic Acinar Cells https://pubmed.ncbi.nlm.nih.gov/26633299/   While supplementation with thiamine in the form Benfotiamine can protect from damage done by  nicotine: Benfotiamine attenuates nicotine and uric acid-induced vascular endothelial dysfunction in the rat https://pubmed.ncbi.nlm.nih.gov/18951979/   I suggest you study the beneficial effects of Thiamine (Benfotiamine and TTFD) on the body and mental health done by Dr. Derrick Lonsdale and Dr. Chandler Marrs.  Dr. Lonsdale had studied thiamine over fifty years.   Hiding in Plain Sight: Modern Thiamine Deficiency https://pmc.ncbi.nlm.nih.gov/articles/PMC8533683/ I suggest you read their book Thiamine Deficiency Disease, Dysautonomia, and High Calorie Malnutrition.     Celiac Disease is a disease of malabsorption causing malnutrition.  Thiamine and benfotiamine: Focus on their therapeutic potential https://pmc.ncbi.nlm.nih.gov/articles/PMC10682628/
    • sleuth
      Thanks for your response.  Everything you mentioned he is and has been doing.  Tobacco is not the same as nicotine.  Nicotine, in the form of a patch, does not cause gastrointestinal irritation.  Smoking does. He is not smoking.  Please do your research before stating false information. Dr. Paul Newhouse has been doing research on nicotine the last 40 years at Vanderbilt University Medical Center.  
    • Jmartes71
      Im so frustrated and still getting the run around trying to reprove my celiac disease which my past primary ignored for 25 years.I understand that theres a ray of medical that doctors are limited too but not listening and telling the patient ( me) that im not as sensitive as I think and NOT celiac!Correction Mr white coat its not what I think but for cause and affect and past test that are not sticking in my medical records.I get sick violently with foods consumed, not eating the foods will show Im fabulous. After many blood draws and going through doctors I have the HLA- DQ2 positive which I read in a study that Iran conducted that the severity in celiac is in that gene.Im glutenfree and dealing with related issues which core issue of celiac isn't addressed. My skin, right eye, left leg diagestive issues affected. I have high blood pressure because im in pain.Im waisting my time on trying to reprove that Im celiac which is not a disease I want, but unfortunately have.It  has taken over my life personally and professionally. How do I stop getting medically gaslight and get the help needed to bounce back if I ever do bounce back to normal? I thought I was in good care with " celiac specialist " but in her eyes Im good.Im NOT.Sibo positive, IBS, Chronic Fatigue just to name a few and its all related to what I like to call a ghost disease ( celiac) since doctors don't seem to take it seriously. 
×
×
  • 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.