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Say You Have Celiac Without Dx


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33 replies to this topic

#16 BlessedMommy

 
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Posted 17 March 2014 - 09:12 AM

Yep...it does work both ways and really is no one's business.  Especially considering the less than stellar experiences of some folks trying to obtain "official" diagnosis :)

 

Exactly! Some people don't realize that getting diagnosed with celiac is no small feat in today's world if you don't have classical symptoms and if you traced your symptoms to gluten and cut it out before you knew that you were supposed to keep eating it.


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~Ruth

Gluten free since 2/14/2010 after suffering a rare and serious complication from my gluten challenge

 

 

 

 

 

 


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#17 GFinDC

 
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Posted 17 March 2014 - 09:50 AM

...

3) I struggle with the psychology of requesting gluten free at restaurants without feeling I have legitimate and a proven reason to be picky

4) I struggle with telling my story to extended family and friends: Yes, I'm certain I need to be 100% gluten free (including crumbs), really it is not "for fun".

5) I hate hearing alternate explanations from others: You are tired b/c you are a mother. / You need a good night's sleep. / You are sick often b/c you have bad luck./ Maybe it is stress./ Maybe your enamel didn't form because of antibiotics./Kids get upset tummies.

 

Do others feel similar psychological struggles?

Hi,

 

Ref #3:  It's not being picky to want to maintain your health.  Everyone (who isn't suicidal) wants to maintain their health.  That's why there are so many vitamin supplements and doctor programs on TV etc.  And other kinds of diets also.  So all those people you are concerned may not understand are prolly just as concerned about their own health as you are about yours.  If they would admit it is another thing.  There are many more people following the gluten-free diet these days than are diagnosed with celiac disease.  And they choose to do that for various reasons, but mostly because they think it will improve their health.  Gluten-free is one of the most popular diet trends ever.  If you aren't gluten-free these days, u r square daddy-o! :D

 

You have every right to protect your own health, and also a responsibility to do so.  The gluten-free diet is a medical diet for people whose bodies react to gluten in some negative way.  About 1/3 of Americans have at least one of the genes for celiac disease, so you are not in rare company there.  There are prolly many more people running around with NCGI than have celiac disease.  And many don't know it.  They used to say 90% of celiacs are undiagnosed.  Not sure what the number is now but it's prolly not a lot better.  Doctors haven't been leading the way on identifying and treating this disease.  It is the patients themselves that are taking the lead.


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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#18 bartfull

 
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Posted 17 March 2014 - 09:52 AM

I am the member Lisa is talking about. Mom was diagnosed by blood testing and biopsy. I had the symptoms. I went gluten-free and my symptoms resolved. Even my doctor agrees that I don't need to be tested. If my "self diagnosis" is good enough for my doctor, it is good enough for me.

 

And it's true that when talking to waiters or others who I don't know well, I will say things like, "I've been diagnosed with celiac disease so I can no longer eat gluten." I say it that way so people who might otherwise feed me gluten will take it seriously. My friends who know the whole story are like my doctor. They see the change in me and they KNOW gluten makes me ill.


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gluten-free since June, 2011

Can't eat soy, corn, or foods high in salicylates.

Nightshades now seem to bother me too.

 

BUT I CAN STILL PLAY MY GUITAR AND THAT"S ALL THAT MATTERS!

 


#19 GottaSki

 
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Posted 17 March 2014 - 10:58 AM

They used to say 90% of celiacs are undiagnosed.  Not sure what the number is now but it's prolly not a lot better.  Doctors haven't been leading the way on identifying and treating this disease.  It is the patients themselves that are taking the lead.

 

Latest numbers I saw from UoC was 85% of celiacs remain undiagnosed and that doesn't begin to touch on the numbers of those estimated to have NCGS.

 

Paul is spot on....our doctors have some catching up to do!

 

And, yes Bartie is the member I thinking of....glad the description was fairly accurate ;)


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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#20 BlessedMommy

 
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Posted 17 March 2014 - 11:00 AM

How do they know what percentage are undiagnosed if they never get diagnosed?  :unsure:


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~Ruth

Gluten free since 2/14/2010 after suffering a rare and serious complication from my gluten challenge

 

 

 

 

 

 


#21 GottaSki

 
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Posted 17 March 2014 - 11:12 AM

How do they know what percentage are undiagnosed if they never get diagnosed?  :unsure:

 

The estimates are produced by the research of the leading celiac centers worldwide.

 

Current numbers are estimated to be:

 

1% of population is estimated to have Celiac.  The numbers vary only slightly between countries with some European countries reporting slightly higher estimates.

 

The numbers for NCGS have risen sharply as understanding, awareness and research of this condition increases.  Current estimates are 6 to 10% of people have some level of gluten intolerance.


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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#22 WinterSong

 
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Posted 18 March 2014 - 07:03 AM

Here's my take on it:

 

I am diagnosed via blood work, endoscopy, and positive response to the diet. One of my family members is self-diagnosed and just tells everyone that she has Celiac. We have all of the same symptoms, and we can trace symptoms and complications back through several generations of our family. She didn't have the best health insurance at the time, so she decided to just go on the diet 100%. And she's feeling much better now. Unfortunately, no other members of our family are willing to get tested or try the diet. 

 

The only time when I have a problem with the concept of being self diagnosed (and this happens a lot in my experience) is when I meet someone who is self diagnosed but readily cheats or is just gluten-lite. Those people spread the wrong information and make the people who do have a serious problem look crazy.

 

However, getting an official diagnosis can be difficult, and there are lots of people on this board who couldn't handle the gluten challenge. So I say that as long as you're 100% gluten-free and take the diet seriously, it is not my place to judge. You make a positive change in your life and you're feeling better. That's what matters.  :)  

 

And if you need to say that you have Celiac in order to get people to take you seriously - go ahead! I sometimes tell restaurants that I am super sensitive and will start vomiting if I digest gluten and they for sure take me seriously then. They don't want other customers seeing someone throw up right after eating one of their meals, lol. Luckily I live in New York (which is gluten free mecca) and I have found a lot of restaurants that take Celiac VERY VERY seriously. 


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Diagnosed with IBS - Fall 2007

Diagnosed with Celiac via blood test (tTg off the charts) - March 18th, 2011

Gluten free as of March 25th, 2011 and going strong!

Positive biopsy April 1st, 2011

 

Blood test results back down to normal levels November 2012


#23 surviormom

 
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Posted 18 March 2014 - 07:47 AM

I cannot imagine anyone that doesn't need to eat this way, doing so.  So, however we come to be diagnosed, by ourselves or a doctor, yeah!  Call it what it is.  I still am not sure if it is Celiac or Intolerance, but I was told if I went back to eating Gluten I would test positive so, that tells me to stay away from it!  And as far as the rest of the world is concerned I am Celiac so they will take it seriously.  I am getting tired of the look of worry on my husbands face when I accidentally eat something that makes me sick.  Its so bad he has started asking the questions if we are out somewhere.  


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Gluten Free 2012 - Dairy Free 2012 - Acid Reflux Diet 2013

Chronic Gastritis 2013 - Peptic Duodenitis 2013 - Hiatal Hernia 2013 - C-Diff 2013 - Endometriosis 2013 - Uterine Fibroids 2013

Patellar Tendonitis 2013 - Arthritis 2014 - NCGI 2014 - Erosive Esophagitis 2014 - Barretts 2014


I have a long list of physical ailments that were being grouped into age/gender by doctors.

Began Gluten Free and Casein Free after an Allergy Test trying to find answers to health problems that the doctors just were not answering well enough. Looking back through history, I have a lifetime of allergies and gastro issues.


Learn from yesterday, Live for today, and Hope for tomorrow. The important thing is not to stop questioning.

Albert Einstein

#24 dilettantesteph

 
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Posted 19 March 2014 - 08:56 AM

I think that this is a common scenario.  You find out about celiac disease and realize, that is probably why you have been having uncontrollable diarrhea for the past 15 years that you doctor said was IBS.  You go to the doctor with this information and he won't test you for celiac disease.  Your health insurance won't pay for you to go to another doctor.  You try the gluten-free diet.  You feel so much better.  You find out that it wasn't just the uncontrollable diarrhea caused by the gluten but so many other things.  Your insurance changes so that you can finally go to another doctor and you find out that you would have to start eating gluten again to test accurately.  Your gastroenterologist recommends against it since you had been so sick.  Other doctors and people around you treat you like you are some sort of nutcase on a fad diet.  Sign.


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#25 FruitEnthusiast

 
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Posted 19 March 2014 - 08:01 PM

In the beginning I really wanted to know if I was Celiac or not for my own closure. I admit it bothers me somewhat not to have a definitive answer, mainly because I like to have answers! I went gluten free before the issue of testing came up so I will never know for sure one way or the other. Now I consider myself Gluten Intolerant because it sounds less serious to me and that makes me feel better. The way I take care of myself isn't going to change regardless. I know what I am dealing with is serious and once I'm well, I do not want to go backward. No one else in my family has any dietary issues of any kind. I'm always the sensitive one in the family in every way. I have finally become ok with that now that I'm in my late 40's. I've learned to appreciate my sensitivities and take the good with the bad. Yes it's hard to be more sensitive than most of the world, but I'm also a redhead, and an artist, and that's pretty cool. Every cloud has a silver lining, as they say. I've learned that although there will always be insensitive people to avoid, there are many others who are sensitive too, and then others who are not as sensitive but appreciate sensitivity very much. The only way to find the good people is to put the truth out there and see what comes back.

 

I guess I'm getting off the topic here a bit, sorry about that, but it is hard to be different and face the people who just don't get what we go through. Getting back to the point, I think of myself as gluten intolerant but when it comes time for me to eat out at a restaurant I'll be calling myself Celiac all the way, so they will take me seriously!!! Whatever we call it is a very serious illness either way, our symptoms tell us that. It will be a big help when more is learned about it. I think we are unlucky in that all this is a relatively new disease in terms of how many of us there are with the problem now and how little is known about it. Celiac disease has been around for a very long time, but not in such high numbers. Hopefully the facts will get clearer sooner rather than later.

 

I just really feel for those of you who have children who have this disease. That must be sooooo hard for you and for them. :(


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Sara  :)   "This life is a test. It is only a test. If it had been an actual life, you would

                             have received further instructions on where to go and what to do"

 

"If you're going through hell, keep going" :) Winston Churchill
************************************
Histamine Intolerant  Apr 2014

N C Gluten Intolerant dx Feb 2012  Also Intolerant to Rice, Eggs, Nightshades.
Gluten-Free/ Grain-free/ only whole foods prepared at home since  March 2012
Dairy, Soy, Chocolate free since Jan 2012   Sensitive to Corn and Mold since 1995
 


#26 BlessedMommy

 
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Posted 20 March 2014 - 04:29 PM

I think that this is a common scenario.  You find out about celiac disease and realize, that is probably why you have been having uncontrollable diarrhea for the past 15 years that you doctor said was IBS.  You go to the doctor with this information and he won't test you for celiac disease.  Your health insurance won't pay for you to go to another doctor.  You try the gluten-free diet.  You feel so much better.  You find out that it wasn't just the uncontrollable diarrhea caused by the gluten but so many other things.  Your insurance changes so that you can finally go to another doctor and you find out that you would have to start eating gluten again to test accurately.  Your gastroenterologist recommends against it since you had been so sick.  Other doctors and people around you treat you like you are some sort of nutcase on a fad diet.  Sign.

 

Exactly! That seriously nails the nail right on the head.

 

Or in another case, you run into your dermatologist with a severe skin rash and he never even suggests the possibility of Dermatitis Herpetiformis or anything food related, he just diagnoses it as eczema that's being worsened by pregnancy and sends you home with steroid cream. You eventually figure out yourself that the rash is triggered by heavy wheat consumption and cut back on your wheat, going gluten free eventually. By the time you decide that you want to tested for celiac, your system has sensitized to gluten to the point where that experiment turns out to be dangerous early on and ends in hospitalization just a few days into it.

 

You now are gluten free without a diagnosis, because to do otherwise would be a form of suicide.

 

*sighs* (that's my reality)


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~Ruth

Gluten free since 2/14/2010 after suffering a rare and serious complication from my gluten challenge

 

 

 

 

 

 


#27 livinthelife

 
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Posted 20 March 2014 - 04:48 PM

I have Celiac Disease.

My mother has it, my only sister has it, an aunt and uncle on my mom's side and another aunt and uncle on my dad's side has it.

No, I have never been officially diagnosed. Blood tests all came back negative, but then again so did my sister's whose Celiac was confirmed with biopsy. 5 years ago I decided to try gluten free for a few weeks to see if I'd feel better and I never turned back. There has never been a doubt in my mind that I have Celiac, and I have always considered myself as having it. There is no way I will ever do a gluten challenge. My doctors have been on board with this.

 

I say I have the disease, and if people ask me how I know, then I tell them about my self-diagnosis and family history. I suppose I could get genetic testing done to be sure, but why bother.

To me, the difference between Celiac Disease and Non-Celiac Gluten Intolerance is only a technicality and both must be 100% gluten-free no matter what.

 

So, if you feel like there's enough evidence that you have Celiac, then I see no reason not to say that you do.
(I am curious whether your family members have been diagnosed or not? If not they should get tested if possible, as well as the rest of your immediate family to see if anyone else might have it and not know.)

 I would say the same. Seems as if some need a diagnosis of some sort to "believe" us. They also take it more seriously...

 

I say do what you need to make your life easier!! 


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#28 dilettantesteph

 
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Posted 21 March 2014 - 06:00 AM

I've read about tests being developed which don't require a gluten challenge.  One day we will be able to get a diagnosis without having to suffer a complete relapse.


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#29 GottaSki

 
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Posted 21 March 2014 - 06:43 AM

I've read about tests being developed which don't require a gluten challenge.  One day we will be able to get a diagnosis without having to suffer a complete relapse.

 

I have as well....the three day challenge is now possible in the research lab, it will take time for it to make it to a doctor's office. 

 

The one we eagerly await (and refer to as the "when we see pigs fly" test) in this family is the biopsy in a petri dish - no challenge required.  Will be great for both those that choose to remove gluten before they have heard the word celiac along with families that have multiple celiacs whom eat mostly gluten-free thus - thankfully - never developing symptoms.


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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#30 BlessedMommy

 
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Posted 21 March 2014 - 10:58 AM

That would be amazing to finally get a DX without having to risk hospitalization, disability, or death!

 

What do you mean by a biopsy in a petri dish?

 

I would never eat gluten for 3 days, but the 3 day gluten challenge one could be a great one to get my kids DX'ed eventually.


  • 0

~Ruth

Gluten free since 2/14/2010 after suffering a rare and serious complication from my gluten challenge

 

 

 

 

 

 





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