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.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Hmart replied to Hmart's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Is this celiac?

    2. - trents replied to Hmart's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Is this celiac?

    3. - klmgarland replied to klmgarland's topic in Dermatitis Herpetiformis
      10

      Help I’m cross contaminating myself,

    4. - DebJ14 replied to Jhona's topic in Introduce Yourself / Share Stuff
      30

      Does anyone here also have Afib

    5. - Hmart posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Is this celiac?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,924
    • Most Online (within 30 mins)
      7,748

    Mckshane
    Newest Member
    Mckshane
    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

    • Hmart
      I was not taking any medications previous to this. I was a healthy 49 yo with some mild stomach discomfort. I noticed the onset of tinnitus earlier this year and I had Covid at the end of June. My first ‘flare-up’ with these symptoms was in August and I was eating gluten like normal. I had another flare-up in September and then got an upper endo at the end of September that showed possible celiac. My blood test came a week later. While I didn’t stop eating gluten before I had the blood test, I had cut back on food and gluten both. I had a flare-up with this symptoms after one week of gluten free but wasn’t being crazy careful. Then I had another flare-up this week. I think it might have been caused by Trader Joe’s baked tofu which I didn’t realize had wheat. But I don’t know if these flare-ups are caused by gluten or if there’s something else going on. I am food journaling and tracking all symptoms. I have lost 7 pounds in the last 10 days. 
    • trents
      Welcome to the forum, @Hmart! There are other medical conditions besides celiac disease that can cause villous atrophy as well as some medications and for some people, the dairy protein casein. So, your question is a valid one. Especially in view of the fact that your antibody testing was negative, though there are also some seronegative celiacs. So, do you get reactions every time you consume gluten? If you were to purposely consume a slice of bread would you be certain to develop the symptoms you describe?
    • klmgarland
      I have a lot to learn!  Thank you
    • DebJ14
      I only went on the multi vitamin AFTER a couple of year of high dose, targeted supplementation resolved most of my deficiencies.  I was on quite a cocktail of vitamins that was changed every 6 months as my deficiencies resolved.  Those that were determined to be genetic are still addressed with specific doses of those vitamins, minerals and amino acids. I have an update on my husband and his A Fib.  He ended up in the hospital in August 2025 when his A Fib would not convert.  He took the maximum dose of Flecainide allowed within a 24 hour period.  It was a nightmare experience!  They took him into the ER immediately.  They put in a line, drew blood, did an EKG and chest Xray all within minutes.  Never saw another human for 6 hours.  Never got any results, but obviously we could see he was still in A fib by watching the monitor.  They have the family sign up for text alerts at the ER desk.  So glad I did.  That is the only way we found out that he was being admitted.  About an hour after that text someone came to take him to his room on an observation floor.  We were there two hours before we saw another human being and believe it or not that was by zoom on the TV in the room.  It was admissions wanting to know his vaccine status and confirming his insurance, which we provided at the ER desk.  They said someone would be in and finally a nurse arrived.  He was told a hospitalist was in charge of his case.  Finally the NP for the hospitalist showed up and my husband literally blew his stack.  He got so angry and yelled at this poor woman, but it was exactly what he needed to convert himself to sinus rhythm while she was there.  They got an EKG machine and confirmed it.  She told him that they wanted to keep him overnight and would do an echo in the morning and they were concerned about a wound on his leg and wanted to do a doppler to make sure he did not have a DVT.  He agreed.  The echo showed everything fine, just as it was at his annual check up in June and there was no DVT.  A cardiologist finally showed up to discharge him and after reviewing his history said the A Fib was due to the Amoxicillan prescribed for his leg wound.  It both triggers A Fib and prevents the Flecainide from working.  His conversion coincided with the last dose of antibiotic getting out of his system.  So, make sure your PCP understands what antibiotics you can or cannot take if susceptible to A Fib.  This cardiologist (not his regular) wanted him on Metoprolol 25 mg and Pradaxa.  My husband told him that his cardiologist axed the idea of a beta blocker because his heart rate is already low.  Sure enough, it dropped to 42 on the Metoprolol and my husband felt horrible.  The pradaxa gave him a full body rash!  He went back to his cardiologist for follow up and his BP was fine and heart rate in the mid 50's.  He also axed the Pradaxa since my husband has low platelets, bruises easily and gets bloody noses just from Fish Oil  He suggested he take Black Cumin Seed Oil for inflammation.  He discovered that by taking the Black Seed oil, he can eat carbs and not go into A Fib, since it does such a good job of reducing inflammation.   Oh and I forgot to say the hospital bill was over $26,000.  Houston Methodist!  
    • Hmart
      The symptoms that led to my diagnosis were stomach pain, diarrhea, nausea, body/nerve tingling and burning and chills. It went away after about four days but led me to a gastro who did an upper endo and found I had marsh 3b. I did the blood test for celiac and it came back negative.  I have gone gluten free. In week 1 I had a flare-up that was similar to my original symptoms. I got more careful/serious. Now at the end of week 2 I had another flare-up. These symptoms seem to get more intense. My questions:  1. How do I know if I have celiac and not something else? 2. Are these symptoms what others experience from gluten?  When I have a flare-up it’s completely debilitating. Can’t sleep, can’t eat, can’t move. Body just shakes. I have lost 10 pounds since going gluten free in the last two weeks.
×
×
  • 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.