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I Laid It All Out There For My Mom

JerryK

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JerryK Community Regular
JerryK
Posted

I

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Lisa Mentor
Lisa
Posted

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
JerryK
Posted
  • Author
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
Lisa
Posted

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

kbabe1968 Enthusiast
kbabe1968
Posted

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
JerryK
Posted
  • Author

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
Viola 1
Posted
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:

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chrissy Collaborator
chrissy
Posted

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
happygirl
Posted

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
Fiddle-Faddle
Posted

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
darlindeb25
Posted

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
gfp
Posted
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
JerryK
Posted
  • Author
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
happygirl
Posted

Jerry :)

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

JerryK Community Regular
JerryK
Posted
  • Author
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
JerryK
Posted
  • Author
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
Nancym
Posted

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
Viola 1
Posted
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
JerryK
Posted
  • Author
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.

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    • SamAlvi
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      By SamAlvi · Posted

      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing and biopsy for celiac disease. Unfortunately, where I live, access to comprehensive testing (including total IgA and endoscopy with biopsy) is limited, which makes things more complicated. Your explanation about small-bowel damage, nutrient absorption, and iron-deficiency anemia still aligns closely with my history, and it’s been very helpful in understanding what may be going on. I don't wanna get Endoscopy and I can't start eating Gluten again because it's hurt really with severe diarrhea.  I appreciate you taking the time to share such detailed and informative guidance. Thank you so much for this detailed and thoughtful response. I really appreciate you pointing out the relationship between anemia and antibody patterns, and how the high DGP IgG still supports celiac disease in my case. A gluten challenge isn’t something I feel safe attempting due to how severe my reactions were, so your suggestion about genetic testing makes a lot of sense. I’ll look into whether HLA testing is available where I live and discuss it with my doctor. I also appreciate you mentioning gastrointestinal beriberi and thiamine deficiency. This isn’t something any of my doctors have discussed with me, and given my symptoms and nutritional history, it’s definitely worth raising with them. I’ll also ask about correcting deficiencies more comprehensively, including B vitamins alongside iron. Thanks again for sharing your knowledge and taking the time to help. I’ll update the forum as I make progress.
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