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Is Okay To Self Diagnose?

freeme808

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freeme808 Apprentice
freeme808
Posted

Hi, I'm back. ;) I don't know if ya remember me. I just wrote a long post under aberlee's. Please read it. :) It explains my reasons...but have any of you self diagnosed yourself with Celiac? It just fits the bill man. Im so torn, because I know if I go back to my insurance doc, that I might, most likely be able to see a GI doc and push for an endoscopy. If I get the confirmation I would be happy...it's just that well, I live on an island and it's hard to go into town and back all the time to visit the docs. But if I get the confirmation, I think people will respect me more. Heck, I think I'd respect myself more. I know the treatment is the same, but I just think I should know.... My husband and I also want to start trying for a baby once I heal up a bit...wouldn't it be important to know if I truly had Celiac for my future child's sake? 
Any kind words of advice? Should I just bite the bullet and try one last time?

 

Thank you in advance! I really appreciate this site and forum.  :wub:

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freeme808 Apprentice
freeme808
Posted
  • Author

I feel like Im on the fence...Cause if don't do it today, I know I can't wait until Monday. I know I sound a bit dumb, like I'm waiting for someone to respond to tell me what to do...but I think I was waiting for someone to respond with advice that would enable me to make up my mind. After speaking with a friend, I think Im just going to pass. I guess Im going to self diagnose. As many of you have said on here, we know our body's best. Sometimes we are our own best health care. If anyone asks, and needs the definition of how bad I react, Im just going to tell them I have Celiac.  :ph34r: Im technically not lying, as it's never been proved that I don't have it. My reaction to gluten is just as severe, as someone that's been a confirmed Celiac. And I know I'll get the respect that I deserve. As I mentioned on another post, I can't doubt myself...the more confidence I have in what's right for me, I think the more respect I'll get from others. And even if I don't, they aren't the ones dealing with the consequences.

 

Now there's that back bone that I was looking for! ;)

GottaSki Mentor
GottaSki
Posted

This is most certainly your decision, but (pardon my big butt)..

 

There are several reasons to receive a diagnosis...these are my top two:

 

1)  Should you question your need to be gluten-free for whatever reason in the future -- it is a lot easier (well it was for me) to never cheat once the dx was confirmed.

 

2) Kids -- mine were young adults and teens when I was finally diagnosed -- medical history is oh - so important -- I know I'm adopted.  Anyhoo depending how quickly the medical profession catches up -- you will need to be your children's advocate as well as your own.  That means demanding regular celiac antibody tests for them minimally every three years or more frequently should any of the over 300 symptoms associated with celiac arise.

 

Whatever you decide -- we'll be hanging around to help thru the transition.

 

Happy Friday :)

1desperateladysaved Proficient
1desperateladysaved
Posted

It is okay to diagnose yourself and just go on the diet.  However, there are some advantages to testing positive.The final trial is always the diet and your reaction to it.  IF those around you, or you, will not accept this alone as valid, or you will ever tire of the diet and give it up, you may need to be tested until an undeniable conclusion is reached.  This may vary from person to person and doctor to doctor. 

 

  If you have a positive test, you and those around you, will never need to consider whether or not you should avoid gluten again.  Yet, the gluten challenge would present many of us with serious difficulties. You have to decide what is best.  It is well you consider your family as well as yourself. 

 

 Are you thinking that your immediate family has seen some of the  changes?  If they began to notice a difference that helps.  My family have begun to notice my reactions.  My little ones notice my face is red before I do.  You seem to know the things you need to know to make the decision.

 

Whatever you decide,

I wish you well.

 

Diana

notme Experienced
notme
Posted

my doc did additional testing when i was tested for celiac to rule out a bunch of other things that could have similar symptoms.  i would make sure it's not something else that might need to be treated differently.  good luck :)  and if gluten free is your answer, we're all here to cheer you on.  no cheating lolz  

IrishHeart Veteran
IrishHeart
Posted

If you feel you are gluten intolerant and need to stay off gluten, then you should do it. Why be sick?

But you asked "should I self diagnose?" and IMHO, no. You may not have Celiac Disease, you could have any number of

other illnesses that are making you ill and it is wise to get some guidance from a doctor (this is not easy for me to say, given my history with

the AMA)..

 

I thought this doctor's response about this was pretty spot on.

 

Open Original Shared Link

 

if you decide to just boot gluten from your life, I will be the first to cheer you on!

 

but I want you to make sure you get the medical help and follow up care you deserve.

whatsit Newbie
whatsit
Posted

Even though it's inconvenient, I agree with the others who recommend getting tested so that you rule out other serious ailments and have the diagnosis in your medical records, should the need arise, and also for the sake of the children you want to have.

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w8in4dave Community Regular
w8in4dave
Posted

I just wish Celiac wasn't this complicated!! Should you self diagnose ??? Thats a tough one!! Maby try and get tested and if it comes back negative , just go on the celiac diet!! If you feel better than yay!! But if you don't then there may be another underlying cause. So just be careful!! If your Dr. Has done blood work, and it's negative then just tell him Hey I have got to do something so I am going on "This" diet!! He may then choose to do another test!! I do suggest if your do go on the diet, Please tell your Doc! it is nice for you and him to have it recorded! This is just my opinion. Good luck :) plaese let us know what you decide..

taynichaf Contributor
taynichaf
Posted

I feel like Im on the fence...Cause if don't do it today, I know I can't wait until Monday. I know I sound a bit dumb, like I'm waiting for someone to respond to tell me what to do...but I think I was waiting for someone to respond with advice that would enable me to make up my mind. After speaking with a friend, I think Im just going to pass. I guess Im going to self diagnose. As many of you have said on here, we know our body's best. Sometimes we are our own best health care. If anyone asks, and needs the definition of how bad I react, Im just going to tell them I have Celiac.  :ph34r: Im technically not lying, as it's never been proved that I don't have it. My reaction to gluten is just as severe, as someone that's been a confirmed Celiac. And I know I'll get the respect that I deserve. As I mentioned on another post, I can't doubt myself...the more confidence I have in what's right for me, I think the more respect I'll get from others. And even if I don't, they aren't the ones dealing with the consequences.

 

Now there's that back bone that I was looking for! ;)

Good plan :)

 

If your still unsure about self diagnosing yourself with celiac, Im sure after time on a gluten free diet, you will realize how serious your symptoms were.... BUT I think celiac can cause big problems with getting pregnant... So if you are not getting an official diagnoses be VERY strict about it all... Gluten free lotions, shampoos, cosmetics, dishes, everything like that.

 

Good luck! :)

GFinDC Veteran
GFinDC
Posted

Hi,

 

It is perfectly fine to choose not to eat food that makes you sick.  Celiac disease isn't a easily recognized condition by doctors.  Most celiacs are undiagnosed or mis-diagnosed today.  And they have been for decades.  I didn't say doctors are dumb.  Nope, I didn't say that.  Just because they miss over 80% of the celiac disease cases.  They are just making a few boo-boos here and there.  Like around 800,000 in the USA.

 

I think it makes sense to have the full celiac disease blood tests panel run.  If you are one of the people who test positive then you have an answer.

 

If you test negative then you may still have it, but not be a good tester on the current tests

 

Or you may have NCGS, which medical science now recognizes as of last year.  But that's about it.  There are no long term studies on NCGS to tell us how much trouble it may cause in the body.  Which means nobody can say that it is not a serious disease with serious implications at this point.  We just don't know.

Duh.

 

Non-celiac wheat sensitivity article
https://www.celiac.com/articles/23033/1/Non-Celiac-Wheat-Sensitivity-It-Exists/Page1.html

innuendo Newbie
innuendo
Posted

Hello, new one here!

 

Currently I'm self diagnosed. I do hope it's only gluten sensitivity, but I might be celiac though. It just makes sense: I have keratosis pilaris on my back upper arms, I have problems with my reproductive system (was tested for hormonal imbalances - came negative, PCOS - negative, I rarely have periods, but I had 4 doctors say that I do ovulate normally). 30 minutes after eating something that contains gluten I feel bloated, tired and, the worst (for me): gasses. I have few eczema outbreaks (my father has a really bad case of psoriasis) and I sometimes feel depressed for no apparent reason.

 

The funny part is that I found out about celiac disease because I thought I have an allergy to potatoes. I blamed all of my problems to potatoes, decided not it eat them but the symptoms didn't disappear. 3 days without gluten - I felt great. Yesterday accidentally ate gluten (sandwich on gluten-free bread but with a cesar dressing that contained gluten) - the symptoms were back. Now I'm going to start eating gluten-free and potato-free, later I will introduce the potatoes to my diet and will see how it goes. 

 

I will do the actual test when I'll come back to my home-country. 

freeme808 Apprentice
freeme808
Posted
  • Author

Thank you for everyone's response!! I can't tell you how much it means to me to have support like this. My family totally understands, but I think they get sick of me talking bout it- ya know, when I cheat... Then get sick. They're like if it makes you sick then stop eating it. Of course I know this, and have been trying to give it my all. I have a hard time going out and going to social situations, as am I sure most do with this big life style change. I went through this kind of transition when I was 13 and realized that dairy didn't sit so well with me, I made a bunch of mistakes, but in the end after suffering the consequences when I did, I eventually stopped.

A little background: I did have some blood work done, but it wasnt the full panel as my insurance didn't have all the tests in their system, one was neg so they didn't do the other. They also tested for deficiencies which they said was all normal, but apparently it wasn't as the way I felt told me otherwise and when I got retested from a different doc and lab(had to pay outta pocket) it showed I was severely anemic and had multiple deficiencies. I also did a stool test panel(outta pocket) and that showed elevated antibodies, which also proved me correct as to the way I was feeling and react to gluten.

I mentioned it in another post, but I did go gluten free in the beginning of February. I was doing so good and feeling so much better, but had to put my dog down in the end of March..... That's when I had gluten. I've been on and off ever since. And because I had a break from gluten, boy was my reaction worse then ever. My rash bumps(which I swear is DH) came back and has stayed, I bloat(5-8lbs) and look about 5-7 month pregnant, it messes up my mental clarity(tired, foggy, grumpy, dizzy, sometimes I slur my words), constipated, and man the list goes on.

I'm at a point where I'm so ready to do this... I know I can, and to feel better again. I have a very supportive family, and this forum is literally a life saver to be able to talk to you guys! But I can't help but feel, especially after what you guys wrote... That I need to get my butt back in that office and demand for them to rule it out for me. I have to go back anyways because my kidney is slightly enlarged. We found that out after I demanded the doc to feel what I thought at the time was a mass(turned out on ultrasound the very hard "mass" was my intestines!- which still leads me to believe I have some gnarly things going on in there- hence Celiac) and that's how I discovered the kidney issue. So because I have to go back for that, I think I'm ready to be referred to the GI doc. I'm not looking forward to eating more gluten(I'm so ready to feel better again!!), but I will do what it takes to make sure I get my confirmation: positive or negative. I NEED to know. I guess better to do the challenge now, then when I do get it fully out of my system- it'd be unbarrable then. And I guess I know myself well enough to know that this will eat at me for years to come if I don't know. Especially when I start my own lil family.

Thank you guys SO much for the advice.... I really appreciate it! I know you guys have been through it too! And it's just so nice to feel backed up! :)

I'm calling on Monday... I'm gunna do this!!! I'll keep you guys updated... I know it's not gunna be a walk on a sunny day, but it shouldn't be a walk during a blizzard either. ;) lol, bad analogy.

freeme808 Apprentice
freeme808
Posted
  • Author

Anti-gliadin IgA:

53Units (Normal is less than 10)

Anti-Tissue Transglutaminase IgA:

11Units (Normal is less than 10)

HLA-DQB1 Molecular analysis, Allele 1 -0502

HLA-DQB1 Molecular analysis, Allele 2 -0602

Serologic equivalent: HLA-DQ 1,1 (Subtype 5,6)

Could I still get a positive biopsy? Even though I don't have "specific" genes to Celiac? Or is the gene thing really still too grey since professionals don't truly know all the ins and outs of it yet.

I'd be very curious if I had a positive biopsy, without the "specific genes", but I wouldn't be surprised as I believe anything is possible.

IrishHeart Veteran
IrishHeart
Posted

Anti-gliadin IgA:

53Units (Normal is less than 10)

Anti-Tissue Transglutaminase IgA:

11Units (Normal is less than 10)

HLA-DQB1 Molecular analysis, Allele 1 -0502

HLA-DQB1 Molecular analysis, Allele 2 -0602

Serologic equivalent: HLA-DQ 1,1 (Subtype 5,6)

 

 

 

is this an Enterolab Test?

just curious

freeme808 Apprentice
freeme808
Posted
  • Author

Hi irishheart,

   Yes it is. I've heard very mixed reviews about them, that they aren't accurate or accredited, etc. At the moment, it's all the nonphysical evidence/proof I have gotten to be able to show my doctor I was right- I mean common, who would make up something like that anyways lol, life would be a lot easier if I/we could eat anything we wanted. I don't really read too much into the whole gene thing after hearing all the mixed reviews. But, I was kinda curious if you don't have "specific" genes if that means you can't have Celiac.

Oh well, Celiac or not, I know the outcome as far as my diet goes. I guess the core of me wanting to have an endoscopy done is to see if everything is okay in there. I know my reaction to gluten on a physical level is severe enough to make a gluten-free lifestyle(I can't have sugar, dairy, or soy either). I honestly just want them to be like...."everything looks normal in there and the biopsy came back normal!". I'd definitely worry A LOT less. :) Then I'd know I'm that much more confident when it comes to my husband and I trying to conceive.

IrishHeart Veteran
IrishHeart
Posted

I understand your frustration (believe me!) but Enterolabs promises a "gluten sensitivity diagnosis" which just does not exist.

There are NO current tests for NCGS.

 

This is not a celiac diagnosis, either. Self-diagnosing and saying you have celiac is entirely your call, but it is not a valid one, based on this test.

If your doctor is willing to biopsy you, despite a negative blood panel, then he is truly enlightened

 

Yes, there are genes associated with celiac disease HLA DQ2 abnd HLA DQ8. Some studies report additional genes, and a few members on here have

celiac but do not have those genes. But this is rare and even so, the genetic test is not a celiac diagnosis either. It is done more to exclude celiac when the test results are questionable.

 

NCGS can create major havoc (just not villous atrophy) and if that is what you have, it is the same treatment, a gluten-free diet. Hope this helps clarify some things for you! Best wishes.

freeme808 Apprentice
freeme808
Posted
  • Author

Yes it does, thank you! :)

You have all been so helpful!  Aghh, part of me wants to push a little further and find out exactly what is going on in there, and part of me wants to just let some time pass with my diet/lifestyle change and let myself heal. I know that I definitely have some inflammation in there, I have had my two doctors feel and confirm the firmness which also can be sore when pressed-hence why I thought I had a mass in there in the beginning. But turns out, it's just my intestines-rock hard. I haven't seen a GI doc yet. I also never stuck with my gluten-free diet long enough to tell a difference in the firmness....But I know my bloat went down, as well as all of my other horrible symptoms slowly diminishing. With that said, maybe I already have my answer...stop eating it already! ;)

I have until Monday to decide, and then I making a decision and sticking with it. I definitely don't want to drive you guys crazy from my indecisiveness! 

 

Thank you for everything!

GottaSki Mentor
GottaSki
Posted

 

I have until Monday to decide, and then I making a decision and sticking with it. I definitely don't want to drive you guys crazy from my indecisiveness! 

 

 

You can't drive us crazy....well....I can tell you that you are no where close to driving us crazy yet.

 

The way I see it -- the silly celiac diagnosis process is driving you crazy -- with good reason.

 

Hang in there....change your mind a few more times if needed...we will still be here and most of us have felt much of your indecisiveness -- so not to worry -- you are not a bother -- just another one of us :)

freeme808 Apprentice
freeme808
Posted
  • Author

Lol, yes it has slowly driven me crazy!!!

Gottaski... Thank you for your kind words.

Celiac Mindwarp Community Regular
Celiac Mindwarp
Posted

I was massively relieved when my endoscopy came back with just a small hiatus hernia. I had been gluten-free for a while, so didn't really expect a celiac diagnosis. I spent years thinking something terrible might be in there.

Sounds like you have decided to take control now, great choice :). I am Non Celiac Gluten Intolerant, and my life has been transformed.

Stick around, we are happy to help :)

IrishHeart Veteran
IrishHeart
Posted

You can't drive us crazy....well....I can tell you that you are no where close to driving us crazy yet.

 

 

 

and Freeme..........some of us are already crazy, so it will be a short drive.......... :lol:

GFinDC Veteran
GFinDC
Posted

and Freeme..........some of us are already crazy, so it will be a short drive.......... :lol:

Beep beep, get outta the way, I want to get there first! :)

GottaSki Mentor
GottaSki
Posted

Beep beep, get outta the way, I want to get there first! :)

 

beep.

GottaSki Mentor
GottaSki
Posted

beep :D

GFinDC Veteran
GFinDC
Posted

OK, moving over for Lieesur.  Geez Leesur, slow down a little some days! :)

 

Hi Freeme,

 

For what it's worth, I think it makes sense to go ahead and do the endoscopy, since you have it available.  Sometimes it can take months to get one scheduled.  GI doctors tend to be very busy for some strange reason.  And at least that way you won't be head scratchin' all summer during the weather.

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