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My Update

jmryan83

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jmryan83 Rookie
jmryan83
Posted

Well I finally went to my long awaited Dr. appointment day before yesterday.

 

Good news is I don't have diabetes and my cholesterol levels are all normal. 

 

Told her all about all the unusual symptoms though and that I thought it might be Celiac or have a gluten intolerance and that I had tried going gluten free for a week and was starting to feel really good.

I asked about testing and she said I would have to pay for it out of pocket because I don't have any risk factors (ie. immediate family member who was positive). Basically, she advised me to just eat gluten-free cause "what harm can it do?" in her words.

 

So no real answers and I'm kinda bummed. Decided to order Celiacsure test from GlutenPro.com

It's almost like a pregnancy test but for Celiac. Has anyone had any experience with this product? It seems legit and I just want to know if it's Celiac or not so I can make the right choices.

 

What do you all think? Any recommendations/input?

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powerofpositivethinking Community Regular
powerofpositivethinking
Posted

hmmm at the rate celiac diagnosis is going, what if you have a family member who has silent celiac, and doesn't even know it yet?  If you show symptoms, why can't she order the test.  it's frustrating that some doctors don't want to give a simple blood test.  Yes, they won't make money off you if you just need a dietary change, but aren't they supposed to help you feel better and get to the root of the problem  :wacko:   do you match up with any of the symptoms here Open Original Shared Link  or on page 6 or 7 of this paper Open Original Shared Link  if yes, can you either give it another try at your doctor or go see a different one?  

 

good luck!

 

Well I finally went to my long awaited Dr. appointment day before yesterday.

 

Good news is I don't have diabetes and my cholesterol levels are all normal. 

 

Told her all about all the unusual symptoms though and that I thought it might be Celiac or have a gluten intolerance and that I had tried going gluten free for a week and was starting to feel really good.

I asked about testing and she said I would have to pay for it out of pocket because I don't have any risk factors (ie. immediate family member who was positive). Basically, she advised me to just eat gluten-free cause "what harm can it do?" in her words.

 

So no real answers and I'm kinda bummed. Decided to order Celiacsure test from GlutenPro.com

It's almost like a pregnancy test but for Celiac. Has anyone had any experience with this product? It seems legit and I just want to know if it's Celiac or not so I can make the right choices.

 

What do you all think? Any recommendations/input?

IrishHeart Veteran
IrishHeart
Posted

The problem with assuming that a patient isn't at risk for celiac because "there is no family history of celiac" lies in the fact that

someone has to be first for it to BECOME part of the family history!

 

I was the first one in my family, and I was 53 years old, having exhibited symptoms all of my life.

It does not mean I am the only celiac. It just means I was the first one to be DIAGNOSED.

My father surely died from this thing, but it's too late for him, I'm afraid.

 

This kind of archaic thinking keeps people sick and undiagnosed.

 

I do not have any knowledge about the "celiacsure test", but you need to be consuming gluten for it to be accurate (like all celiac testing) and I did see this on the website:

 

"If you do test negative according to the Celiacsure™ Celiac Test kit, you may not have celiac disease but this is not a guarantee.

If you have been on a gluten free or gluten-reduced diet, you may not have been eaten enough wheat for a long enough time to get a positive test. You may also be a person who does not produce the IgA antibodies required for this test."

 

So, the results may leave you guessing.

 

Your doctor says "go gluten free, what could it hurt?" Well, if you DO have celiac, it is wise to know for sure so she provides necessary follow-up care. While I appreciate her open mind, she is doing you a disservice. IMHO

 

In the end, if you feel better off gluten, that speaks volumes. If you did not have a gluten sensitivity of some nature, you would not notice an improvement.

jmryan83 Rookie
jmryan83
Posted
  • Author

hmmm at the rate celiac diagnosis is going, what if you have a family member who has silent celiac, and doesn't even know it yet?  If you show symptoms, why can't she order the test.  it's frustrating that some doctors don't want to give a simple blood test.  Yes, they won't make money off you if you just need a dietary change, but aren't they supposed to help you feel better and get to the root of the problem  :wacko:   do you match up with any of the symptoms here Open Original Shared Link  or on page 6 or 7 of this paper Open Original Shared Link  if yes, can you either give it another try at your doctor or go see a different one?  

 

good luck!

 

My biggest problem is I'm at the mercy of the public health system where I live. If she can't justify the state paying the cost of the test by more than just symptomology I don't think the cost would be covered. If I had an immediate family member who was diagnosed it would give some justification. 

 

I also tried explaining to her that I am adopted and I have no idea what health/risk factors I have on my paternal side, and only know a few factors on my maternal. It's not out of the realm of possibility that either could have had some gluten issue, but it wasn't enough.

 

 

The problem with assuming that a patient isn't at risk for celiac because "there is no family history of celiac" lies in the fact that

someone has to be first for it to BECOME part of the family history!

 

I was the first one in my family, and I was 53 years old, having exhibited symptoms all of my life.

It does not mean I am the only celiac. It just means I was the first one to be DIAGNOSED.

My father surely died from this thing, but it's too late for him, I'm afraid.

 

This kind of archaic thinking keeps people sick and undiagnosed.

 

I do not have any knowledge about the "celiacsure test", but you need to be consuming gluten for it to be accurate (like all celiac testing) and I did see this on the website:

 

"If you do test negative according to the Celiacsure™ Celiac Test kit, you may not have celiac disease but this is not a guarantee.

If you have been on a gluten free or gluten-reduced diet, you may not have been eaten enough wheat for a long enough time to get a positive test. You may also be a person who does not produce the IgA antibodies required for this test."

 

So, the results may leave you guessing.

 

Your doctor says "go gluten free, what could it hurt?" Well, if you DO have celiac, it is wise to know for sure so she provides necessary follow-up care. While I appreciate her open mind, she is doing you a disservice. IMHO

 

In the end, if you feel better off gluten, that speaks volumes. If you did not have a gluten sensitivity of some nature, you would not notice an improvement.

 

I did read up on the Celiacsure website so I know it's not a sure thing, but it may give me some insight. If I did test positive it might give me some ammunition (so to speak) so I could go back to my Dr. and get additional testing done.

 

I'm continuing to have gluten in my daily diet. It's very hard, but I have at least one meal a day with a hearty helping of glutenous foods.

IrishHeart Veteran
IrishHeart
Posted

Honest to God, after I typed all that this morning, I thought, the whole point about family history is moot if someone is  adopted

and has no knowledge of this information. 

Anyway, 

if you can afford the CelaicSure test, and you want to do it, then maybe you should.

It doesn't sound like you're going to get tested by the doctorr  any other way.

 

I know some people have used the biocard test.  It's similar correct? Maybe you should post a thread asking about this test.

The title of this thread will not attract answers to that question, I'm afraid.

Good luck, hon.

1desperateladysaved Proficient
1desperateladysaved
Posted

I also had no family history of celiac.  I had 4/4 genes for it.  That means I got 2 from Dad and Mom.  I found out when I was 49 and have had much damage from it.  Please do try to find out if you have it, and share with family members.  None of my family members have done anything about it, but they know it is possible.  You can test for yourself and your family's benefit.  It could help someone, even if they don't realize it now.

 

I wish you Really Well and healing.  I hope you will get some definitive answers too.

 

Diana

nosy parker Apprentice
nosy parker
Posted

The biocard test is now called celiacsure. It's a TTG IgA test.  I used it and it is very simple to use.  Unfortunately I am IgA deficient so the test was useless for me.  I didn't know this at the time.  But, for $50 it is certainly worth a try if it can get the ball rolling with your doctor should it reveal a positive. It's approved by Health Canada and I felt it was trustworthy given the info on the site. Good luck.

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