Jump to content

Follow Us:  Twitter Facebook RSS Feed            




   arrowShare this page:
   

   Get email alerts  Subscribe to FREE Celiac.com email alerts

 
Ads by Google:
Celiac.com Sponsor:                                    


Photo
- - - - -

Accepting My Ibs Diagnosis, Odd Symptoms That Don't "fit" Anywhere


  • Please log in to reply

30 replies to this topic

#16 Lock

 
Lock

    Community Member

  • Advanced Members
  • PipPipPip
  • 44 posts
 

Posted 02 September 2013 - 10:59 AM

Good Lord. That's all they did?  Wow, you would think the doctors were deliberately trying to be obstructive. That test can easily be a false negative. It can rule Celiac IN but it cannot rule Celiac OUT. My own doctor told me that.

 

Your father is seriously ill and so are you and you need to get to the bottom of it.

 

For $149 you can get your genes tested, and again, even your father. For $300 plus international shipping, you can know whether you and your father have the Celiac DNA without having to go beg doctors for information. EnteroLab will do this test without any doctor order and with complete confidentiality. Yeah you have to pay for it, but there's got to be a point where it's worth it to know something. A positive gene test will not tell you that you or your father have Celiac Disease, but it WILL be strong evidence for it.

 

The EnteroLab stool tests are controversial, some think there are "too many positives" but the stool test is more sensitive than serum tests. You may not be interested in trying to ship your poo around anyway, I don't know what the overnight cost would be for that.

 

However, the EnteroLab gene test is legit. He only tests the beta allele, but that is to keep cost down and if you have the beta allele it is very likely you also have the alpha. This is complicated and no need to try to understand that in detail. There are other companies who test for alpha and beta but require a doctor's order, or require you to name a doctor to whom they mail the result, and they are also more expensive.

 

The EnteroLab test is simple, easy as pie. You'll get a couple of Q-Tips and an envelop, you rub the Q-Tips around inside your cheeks, put them in the envelop and ship them off. You can sign your Dad up for it too, as far as I know they ship it all over the world, but you can call them on the phone to make sure. They are real nice to talk with.

 

If the result comes back you or your Dad are say, HLA-DQ2, or DQ8, then you can pretty much be sure you both have Celiac. Other genes can predispose you to non-celiac gluten sensitivity. There are few that pretty much rule out Celiac, and if you have those, you will know to keep searching, although even some of those folks have been known to have gluten issues and even villous atrophy.

 

The gene test does not diagnose you with Celiac, but it will certainly guide your mind one way or the other and be one piece of the puzzle.

 

And P.S. no, it is NOT worth waiting a year and redoing the test. If gluten is damaging you, you are risking serious illness and permanent damage.

 

Second P.S. Edit, don't misunderstand, if you are going to pursue an endoscopy then don't go gluten free yet. Pursue it aggressively with your doctor though, don't let them make you wait a year.

 

Sorry, third P.S. I meant to give you the link:

https://www.enterola...tInfo.aspx#gene


  • 0

Celiac.com Sponsor:

#17 0range

 
0range

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 86 posts
 

Posted 02 September 2013 - 12:04 PM

Good Lord. That's all they did?  Wow, you would think the doctors were deliberately trying to be obstructive. That test can easily be a false negative. It can rule Celiac IN but it cannot rule Celiac OUT. My own doctor told me that.

 

Your father is seriously ill and so are you and you need to get to the bottom of it.

 

For $149 you can get your genes tested, and again, even your father. For $300 plus international shipping, you can know whether you and your father have the Celiac DNA without having to go beg doctors for information. EnteroLab will do this test without any doctor order and with complete confidentiality. Yeah you have to pay for it, but there's got to be a point where it's worth it to know something. A positive gene test will not tell you that you or your father have Celiac Disease, but it WILL be strong evidence for it.

 

The EnteroLab stool tests are controversial, some think there are "too many positives" but the stool test is more sensitive than serum tests. You may not be interested in trying to ship your poo around anyway, I don't know what the overnight cost would be for that.

 

However, the EnteroLab gene test is legit. He only tests the beta allele, but that is to keep cost down and if you have the beta allele it is very likely you also have the alpha. This is complicated and no need to try to understand that in detail. There are other companies who test for alpha and beta but require a doctor's order, or require you to name a doctor to whom they mail the result, and they are also more expensive.

 

The EnteroLab test is simple, easy as pie. You'll get a couple of Q-Tips and an envelop, you rub the Q-Tips around inside your cheeks, put them in the envelop and ship them off. You can sign your Dad up for it too, as far as I know they ship it all over the world, but you can call them on the phone to make sure. They are real nice to talk with.

 

If the result comes back you or your Dad are say, HLA-DQ2, or DQ8, then you can pretty much be sure you both have Celiac. Other genes can predispose you to non-celiac gluten sensitivity. There are few that pretty much rule out Celiac, and if you have those, you will know to keep searching, although even some of those folks have been known to have gluten issues and even villous atrophy.

 

The gene test does not diagnose you with Celiac, but it will certainly guide your mind one way or the other and be one piece of the puzzle.

 

And P.S. no, it is NOT worth waiting a year and redoing the test. If gluten is damaging you, you are risking serious illness and permanent damage.

 

Second P.S. Edit, don't misunderstand, if you are going to pursue an endoscopy then don't go gluten free yet. Pursue it aggressively with your doctor though, don't let them make you wait a year.

 

Sorry, third P.S. I meant to give you the link:

https://www.enterola...tInfo.aspx#gene

 

Thank you, thank you so much. Other than the endoscopy, are there any other tests that they usually do (blood test wise)? I will look into ordering the gene test, as you said it does indeed answer a piece of the puzzle! 


  • 0

Canadian undergraduate student in 3rd year, studying Psychology and Speech Communication. Hoping to go into rehabilitation sciences!  B)

  

Dx with: 

Hashimoto's thyroiditis - 22/09/12

benign paroxysmal positional vertigo (bppv) - 18/05/13

irritable bowel syndrome - 21/06/13 

HLA-DQ8 gene ~ heterozygous (moderate risk for celiac) - 29/11/13

 

-> underwent a colonoscopy on 24/08/13, showed mild focal colitis + lymphoid hyperplasia (aka inflammation) in terminal ileum


#18 nvsmom

 
nvsmom

    Moderator

  • Moderators
  • PipPipPipPipPipPip
  • 3,495 posts
 

Posted 02 September 2013 - 05:38 PM

Thanks so much. I'm guessing it isn't normally done? Unless they suspect absorption issues such as celiac? Just got my Vit D result back.. am deficient but I think so are most Canadians XD

 

Here are my celiac test results (reference range in brackets):

 

Ttg-IgA: 3 u/mL. Negative. (0 - 3: negative, 4 - 10: weak positive, >10: positive)

Immunoglobulin A: 193 mg/dL (91 - 414 mg/dL)

 

Is it worth doing another blood test in a year or more, if the symptoms persist? For some reason I feel strongly about having a "positive" result before going 100% gluten-free... is that too demanding? I can eat gluten-free, but doubt I would be very serious about cross contamination without a diagnosis? 

 

They only do the tTG IgA in Alberta too; if you are positive they do an EMA IgA then... They do a better job of testing in the States. Same with the vitamin testing. I had to see another doctor (orthomolecular) because my old doctor wouldn't test me.

 

You are really really close to a weak positive on that test. With the tTG IgA test, that could be do to celiac disease or hashimoto's... it's hard to say. It could be a result of the weakness of the tests too - tTG IgA misses between 5-25% of all celiacs which is part of the reason that running only one test isn't really good enough.  I'm normally not a huge fan of Enterolab, but it might be something to consider if it is the only place you can get more testing. I would bet money it would confirm celiac disease. 

 

And I understand about  not treating the diet as seriously when you don't know for certain if celiac disease is the cause of your problems, but the problem is that it probably is a cause, whether it is from celiac disease or non-celiac gluten intolerance (NCGI).  Once you are sure you are done testing, give gluten-free a try for a good 6 months; some find 3 months is enough to see improvements, but some backslide so more time can be helpful (I was worse off at 3 months gluten-free than before I went gluten-free).


  • 0
Nicole Posted Image

"Acceptance is the key to happiness."

ITP - 1993
Celiac - June, 2012
Hypothyroid - August, 2012

CANADIAN

Celiac.com - Celiac Disease Board Moderator

#19 Gemini

 
Gemini

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 3,153 posts
 

Posted 02 September 2013 - 06:12 PM

If you have all these symptoms and do not feel good, and try the gluten-free diet and notice positive changes over time, why would it be difficult to stick to the diet and be strict with it?  I don't understand this.  You have quite a list going there and most, if not all, are related to a gluten problem. You have not found anything else, nor have your doctors. If the diet makes you feel as good as it has for most of us, and resolves many of your issues, isn't that proof enough to follow a healthy diet?

Not to mention having Hashi's, which is a strongly related condition.  


  • 0

#20 0range

 
0range

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 86 posts
 

Posted 03 September 2013 - 03:18 AM

If you have all these symptoms and do not feel good, and try the gluten-free diet and notice positive changes over time, why would it be difficult to stick to the diet and be strict with it?  I don't understand this.  You have quite a list going there and most, if not all, are related to a gluten problem. You have not found anything else, nor have your doctors. If the diet makes you feel as good as it has for most of us, and resolves many of your issues, isn't that proof enough to follow a healthy diet?

Not to mention having Hashi's, which is a strongly related condition.  

 

This is going to sound silly, but sometimes I wonder if wheat is my only issue and not gluten as a whole. I don't seem to 'notice' small amounts of gluten, but I don't know if it's because I'm feeling crappy in general so trace amounts don't really make a difference or not lol.


  • 0

Canadian undergraduate student in 3rd year, studying Psychology and Speech Communication. Hoping to go into rehabilitation sciences!  B)

  

Dx with: 

Hashimoto's thyroiditis - 22/09/12

benign paroxysmal positional vertigo (bppv) - 18/05/13

irritable bowel syndrome - 21/06/13 

HLA-DQ8 gene ~ heterozygous (moderate risk for celiac) - 29/11/13

 

-> underwent a colonoscopy on 24/08/13, showed mild focal colitis + lymphoid hyperplasia (aka inflammation) in terminal ileum


#21 emilykay405

 
emilykay405

    Community Member

  • Advanced Members
  • PipPipPip
  • 50 posts
 

Posted 03 September 2013 - 04:30 AM

Is it worth doing another blood test in a year or more, if the symptoms persist? For some reason I feel strongly about having a "positive" result before going 100% gluten-free... is that too demanding? I can eat gluten-free, but doubt I would be very serious about cross contamination without a diagnosis? 

 

I wouldn't say it is too demanding. I almost see it as human nature not to be a serious about something if you only think you have it. Where you gluten free-ish when they did the testing initially (if it's in another post I didn't see it...)? If you were that may have caused a false positive. From what I've read you can go full gluten for a few months and then be tested again. It's also worth noting that sometimes blood work is negative even when you have villi damage. You can also be your own advocate and start asking for the endoscopy. Once you ask loud enough, you should get some results.


  • 0

#22 IrishHeart

 
IrishHeart

    Warrior Princess

  • Advanced Members
  • PipPipPipPipPipPip
  • 10,558 posts
 

Posted 03 September 2013 - 05:27 AM

This is going to sound silly, but sometimes I wonder if wheat is my only issue and not gluten as a whole. I don't seem to 'notice' small amounts of gluten, but I don't know if it's because I'm feeling crappy in general so trace amounts don't really make a difference or not lol.

 

If you consistently feel crappy, I suspect gluten is your problem and trace amounts are what keep the inflammatory process going in your body.

 

This is why celiacs cannot have ANY gluten.

 

Hon, the thing is, you have many symptoms and as Gemini has pointed out, diagnosis or not, if removing gluten makes you feel well and also aids in controlling the thyroiditis, (and quite possibly eliminating the "IBS") then why would you have a problem going G F?

The question is...WHY is your bowel irritable? It's meant to function normally and if it isn't, then something has it inflamed.

 

 I have relatives and friends who feel lousy and are in pain every single day but refuse to give up gluten or even be tested. 

Why on earth would anyone live that way.....because pasta and bread is that important? so what? they make G F bread and pasta!

I have to resist saying: That's fine you guys, but then you do not get to complain if your assorted health problems, depression and growing list of autoimmune diseases makes you miserable!

 

I was so desperately ill when diagnosed, I would have eaten dirt if it made me feel great. (fortunately, a G F diet is a lot tastier) :)

 

Here's what I recently told someone who was on the fence about all this:

 

"How bad do you want to feel good?"  


  • 0

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#23 w8in4dave

 
w8in4dave

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 1,251 posts
 

Posted 03 September 2013 - 05:39 AM

Ditto IrishHeart!! I love that!! "How bad do you want to feel good?"


  • 0

Recovering Gluten Eater 

DX'd June 17th 2013


#24 Lock

 
Lock

    Community Member

  • Advanced Members
  • PipPipPip
  • 44 posts
 

Posted 03 September 2013 - 05:47 AM

This is going to sound silly, but sometimes I wonder if wheat is my only issue and not gluten as a whole. I don't seem to 'notice' small amounts of gluten, but I don't know if it's because I'm feeling crappy in general so trace amounts don't really make a difference or not lol.

 

It is not worth it to try to sort out in detail. It is true there is a difference between most highly processed wheat flour, and the regular "old" flour. Then there are wheat varieties, some with more gluten than others. There are also factors other than gliadin, but gliadin is the only one they test antigens for.

 

If you have been having a celiac reaction, that is, small intestine damage due to gluten, for a year, then your gut is likely a mess and you could be cross reacting to dairy, soy, and a number of other things.

 

Gluten will cause the antibody reaction, whether in large or small amounts. You can't really tell at this point from testing foods, because often the very food that is causing the problem will be the only one that will settle your stomach. I did this for years, using crackers, bread, and dairy, or cookies, at times eating nothing else at all, because anything else would upset my gut. Now that I am gluten free completely, I am having the bad reaction others mention (you get worse before you get better) with my gut. In fact, thank you so much CDinDC for posting that list, I need to get probiotics and do some of those other things.

 

But mentally, being off the gluten has turned my life completely around. it's like I've had a brain transplant. I feel like I've had ADD all my life and suddenly someone has put me on Ritalin. I can THINK clearly for the first time ever.

 

I completely understand where you are at with not wanting to go gluten free until you know for sure, and with wondering if you will be motivated to stick to it without a positive diagnosis. I was there a couple of weeks ago myself.  But listen up, like Gemini says, pay attention here:

 

1. Yes, going 100% gluten free is a big deal. You have to go over your whole kitchen with a fine tooth comb, throw out a bunch of stuff, buy a bunch of stuff, completely change your eating ways and deal with your gut complaining that it isn't getting what it is addicted to. You have to figure out how to deal with restaurants, family holidays, and you pretty much need to have something to give you the spine to stand up to these people. I completely understand. You want that absolute diagnosis from the authority in charge, so you can say, "the doctor diagnosed me with the serious disease, I am not just going with a gluten free fad because it's the cool thing these days." 

 

Well if the doctor won't even give you the necessary tests to get to that diagnosis, you need to do whatever you can to get to that point in your own mind. My blood test was negative also, but I had been largely gluten-free for months, so I had to make a decision about the endoscopy. In my case, my doctor was willing to refer me to a GI to get it done if I wanted. (I decided not to.) But if I did and if I did not like that GI, I am free to go to ANY GI in the U.S. I choose until I find one that will do my endoscopy. Worst case, my insurance won't pay and I'll have to pay out of pocket, but that is not likely. If I find a GI who agrees I need it, my insurance will pay. So money becomes not an issue, but if you are in a different situation, money might be an issue, but don't fall into the mindset that just because the "system" won't "let" me get the right tests (meaning they won't pay for it) does not mean I'm not free to go get it some other way, even if I have to travel and pay for it out of pocket.

 

So you need to understand that the ultimate authority in this is YOU, not the doctor. YOU can decide you need to go gluten free, based on the information you have pulled together. How much information and of what sort is for you to sort out. You may or may not be able to fund privately this or that investigation into your own health, but do what you can.

 

You can always return to the doctors and "re"-complain. Something most people don't understand about doctors is that they have levels of response to a certain complaint, and they escalate the levels at each visit. You have complaint A, doctors have response x, y and z. First they tell you x and you are to go away. If you never come back they assume x fixed you. If you come back they try y. Rinse and repeat. Sometimes you need to return four or five times with the SAME complaint before the doctor will get around to the test or treatment you really need. So it may be worth going back to that doctor and insisting you have upper GI symptoms and want to see what is going on in there, if it is really important for you to get the biopsy result. But you risk it being negative and then you will be back in the same boat without a definite answer.

 

But you need to be sure to research and understand the biopsy and villous atrophy situation. The biopsy looks for COMPLETE destruction of the villi. If the atrophy is only partial, and/or you do not contain the right autoimmune cells, they can give you a negative or inconclusive result, but you could still be suffering damage from gluten.

 

Statistically, we are finding out that gluten caused damage is very widespread. If you have the genetic markers, it is highly likely gluten is damaging you, no matter what the results of the endoscopy and blood tests are. I was in your boat exactly a couple weeks ago. You can read my first post, how confused I was. A lot of focused thinking and research, gaining information on this subject will bring you answers.

 

2. Fearing you will not be motivated to stick to a gluten free diet without a firm diagnosis. I worried about that too. It turns out that it is not an issue at all. The reason is this: right now you are looking at all of this through a fogged mind. If you go 100% gluten free and if gluten is your problem, then it will become like you took off glasses smeared with vaseline and put on clear clean ones. You will see so clearly that gluten free is the answer that you will be flooded with motivation to spare. You will also have more physical energy to proceed with what you need to accomplish. If this does not happen to you, then maybe you are not celiac/gluten sensitive, and need to push for more answers.

 

I so completely understand the need for an official authoritative answer, not the diagnosis of celiac/villous atrophy itself, but the authoritative command that I "should" go completely gluten-free. Which at first I thought DID require the official celiac/villous atrophy diagnosis.  I wanted that so badly that I went to a holistic doctor back when my regular doctor told me 100% gluten free was NOT necessary. It turns out she was being wise, because I had yet to be tested, But I didn't know that, I thought she was being equivocal about me maybe being celiac. Looking back she should have drawn blood right then but at that point in time I was already feeling so much better just getting off the sugar roller coaster she thought that might have been all I needed to fix me. But my rashes, etc. continued getting worse and so I went back but I digress...

 

The holistic doctor said, just based on my symptoms, "Of course you have gluten enteropathy. Go 100% gluten-free, that is a given. On to other things...."

 

Then he tested me for billions of other things, probably all consequences of celiac, but all stuff I don't necessarily need to know right now. It's too much coming at me. Such as exactly what bad bugs are in my gut, how screwed up are my hormones, and so on. It happens that didn't satisfy me, not that I didn't believe him, but at heart I guess I am kind of a "by the rule" person and need to hear it from the conventional medical system, as screwed up as it is. I got the idea everyone who walks into the holistic doctor clinic gets a gluten diagnosis and so it was not terribly credible, although I believe he was correct.

 

Alternative medicine is another option, if you are driven to it by the lack of care from regular medicine. I don't know what holistic medicine is like in Canada. Here, the guy knew his stuff and was very up to speed with gluten sensitivity. But he wanted me to do all kinds of colonics and things that maybe would help (I don't know anything about them) but I simply cannot manage those things right now. I don't know if they are scientifically proven, I don't have the time, I don't have the money, and I just want to see what going gluten-free can do for me first, so I hesitate to mention alternative medicine, you have to beware and not be sucked into a belief system that may or may not be credible.

 

But I am putting out options, just to illustrate that you are in the driver's seat and you have pathways to explore. And realize that going back to the doctor is one of them, he needs to go to the next level with you, and if he doesn't after you go back and say you're still sick and still don't have answers, I would almost say he is committing malpractice NOT to give you an endoscopy. Just because you have lower gut findings does not prove the absence of upper gut problems.

 

For me, I went back to my regular doctor and, now she used "y" and did the blood test which by then was too late, I had sero converted, if it had ever been positive, but when I gave her my HLA-DQ2 result and she looked back at my history, that convinced her I need to be completely gluten-free. For me, it was the authoritative command I needed to motivate me. For me the biggest issue is not my own motivation, but my needing ammunition to talk to my family. My siblings and my children, and even my mother, all have symptoms of gluten issues, but it is hard to slap these people awake. So I talked frankly and openly with my doctor. "What can I say to my family, are you telling me that I have a definite diagnosis that I can use to tell them they have a first degree family member with Celiac Disease?" Her answer was "yes". Officially, on paper, my diagnosis is "celiac or NCGS" because neither has been proven or disproven. But for me I don't need anything more, because the treatment is identical - a completely gluten free diet. And I have the blessing of my doctor to tell my family they have a sister/mother/daughter seriously ill because of gluten and they really need to look into their own health via gluten-related disorders.

 

Sorry this is so long but I'm hoping my own journey will make you feel less alone. My solutions might not be your solutions, but I'm hoping to help shed a little more light for you. All the responses you've gotten in this thread are great. These people know what they are talking about.

 

The blood tests, yes, there are ALL kinds of "celiac panels" and the doctors have a dozen they can pick and choose from, of varying cost. I don't know how the system works in Canada, are doctors penalized for expensive testing? Are they rewarded for low cost per patient? Do they track that kind of thing in the system? I don't know but if they do then I would be doubly suspicious that you are only getting minimal care. It might be that you must return and "re"-complain more often to get to the same level of care that you'd get from an average doctor in the U.S. who is not yet tangled in a system that tracks "cost efficiency" per patient. But you can go online to LabCorp or whatever testing lab and look up the various celiac panels they have.  For that matter, you can get the gene test through a lab through your doctor if he will order it. The fact that doctors so seldom order it tells me that many of them are just not yet aware of how widespread non-classic celiac presentation is.

 

Understand, any doctor who completed medical school before 2003 and possibly for many years after, probably thinks of celiac in terms of a growth-retarded child with diarrhea and malnutrition. If you are outside that box, God help you. At least in the U.S., and I suspect Canada also still grossly under-estimates its celiac population. For example, it is known that celiac is associated with type I diabetes. Any child who gets type I should immediately be tested for celiac. I doubt this is happening, but it should.


  • 0

#25 IrishHeart

 
IrishHeart

    Warrior Princess

  • Advanced Members
  • PipPipPipPipPipPip
  • 10,558 posts
 

Posted 03 September 2013 - 05:58 AM

LOCK,

Your journey is not unlike so many of us on here.And you raise many good points.

 

As for this (below) ...please ---avoid colon irrigation. IMO, the last thing your GI tract needs is THAT! They have absolutely no medical value that I have found in my research--especially

for anyone whose colon is already inflamed. You are very wise to say no.

 

But he wanted me to do all kinds of colonics and things that maybe would help (I don't know anything about them) but I simply cannot manage those things right now. I don't know if they are scientifically proven, I don't have the time, I don't have the money, and I just want to see what going gluten-free can do for me first, so I hesitate to mention alternative medicine, you have to beware and not be sucked into a belief system that may or may not be credible.


  • 0

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#26 0range

 
0range

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 86 posts
 

Posted 03 September 2013 - 06:51 AM

It is not worth it to try to sort out in detail. It is true there is a difference between most highly processed wheat flour, and the regular "old" flour. Then there are wheat varieties, some with more gluten than others. There are also factors other than gliadin, but gliadin is the only one they test antigens for.

 

If you have been having a celiac reaction, that is, small intestine damage due to gluten, for a year, then your gut is likely a mess and you could be cross reacting to dairy, soy, and a number of other things.

 

Gluten will cause the antibody reaction, whether in large or small amounts. You can't really tell at this point from testing foods, because often the very food that is causing the problem will be the only one that will settle your stomach. I did this for years, using crackers, bread, and dairy, or cookies, at times eating nothing else at all, because anything else would upset my gut. Now that I am gluten free completely, I am having the bad reaction others mention (you get worse before you get better) with my gut. In fact, thank you so much CDinDC for posting that list, I need to get probiotics and do some of those other things.

 

But mentally, being off the gluten has turned my life completely around. it's like I've had a brain transplant. I feel like I've had ADD all my life and suddenly someone has put me on Ritalin. I can THINK clearly for the first time ever.

 

I completely understand where you are at with not wanting to go gluten free until you know for sure, and with wondering if you will be motivated to stick to it without a positive diagnosis. I was there a couple of weeks ago myself.  But listen up, like Gemini says, pay attention here:

 

1. Yes, going 100% gluten free is a big deal. You have to go over your whole kitchen with a fine tooth comb, throw out a bunch of stuff, buy a bunch of stuff, completely change your eating ways and deal with your gut complaining that it isn't getting what it is addicted to. You have to figure out how to deal with restaurants, family holidays, and you pretty much need to have something to give you the spine to stand up to these people. I completely understand. You want that absolute diagnosis from the authority in charge, so you can say, "the doctor diagnosed me with the serious disease, I am not just going with a gluten free fad because it's the cool thing these days." 

 

Well if the doctor won't even give you the necessary tests to get to that diagnosis, you need to do whatever you can to get to that point in your own mind. My blood test was negative also, but I had been largely gluten-free for months, so I had to make a decision about the endoscopy. In my case, my doctor was willing to refer me to a GI to get it done if I wanted. (I decided not to.) But if I did and if I did not like that GI, I am free to go to ANY GI in the U.S. I choose until I find one that will do my endoscopy. Worst case, my insurance won't pay and I'll have to pay out of pocket, but that is not likely. If I find a GI who agrees I need it, my insurance will pay. So money becomes not an issue, but if you are in a different situation, money might be an issue, but don't fall into the mindset that just because the "system" won't "let" me get the right tests (meaning they won't pay for it) does not mean I'm not free to go get it some other way, even if I have to travel and pay for it out of pocket.

 

So you need to understand that the ultimate authority in this is YOU, not the doctor. YOU can decide you need to go gluten free, based on the information you have pulled together. How much information and of what sort is for you to sort out. You may or may not be able to fund privately this or that investigation into your own health, but do what you can.

 

You can always return to the doctors and "re"-complain. Something most people don't understand about doctors is that they have levels of response to a certain complaint, and they escalate the levels at each visit. You have complaint A, doctors have response x, y and z. First they tell you x and you are to go away. If you never come back they assume x fixed you. If you come back they try y. Rinse and repeat. Sometimes you need to return four or five times with the SAME complaint before the doctor will get around to the test or treatment you really need. So it may be worth going back to that doctor and insisting you have upper GI symptoms and want to see what is going on in there, if it is really important for you to get the biopsy result. But you risk it being negative and then you will be back in the same boat without a definite answer.

 

But you need to be sure to research and understand the biopsy and villous atrophy situation. The biopsy looks for COMPLETE destruction of the villi. If the atrophy is only partial, and/or you do not contain the right autoimmune cells, they can give you a negative or inconclusive result, but you could still be suffering damage from gluten.

 

Statistically, we are finding out that gluten caused damage is very widespread. If you have the genetic markers, it is highly likely gluten is damaging you, no matter what the results of the endoscopy and blood tests are. I was in your boat exactly a couple weeks ago. You can read my first post, how confused I was. A lot of focused thinking and research, gaining information on this subject will bring you answers.

 

2. Fearing you will not be motivated to stick to a gluten free diet without a firm diagnosis. I worried about that too. It turns out that it is not an issue at all. The reason is this: right now you are looking at all of this through a fogged mind. If you go 100% gluten free and if gluten is your problem, then it will become like you took off glasses smeared with vaseline and put on clear clean ones. You will see so clearly that gluten free is the answer that you will be flooded with motivation to spare. You will also have more physical energy to proceed with what you need to accomplish. If this does not happen to you, then maybe you are not celiac/gluten sensitive, and need to push for more answers.

 

I so completely understand the need for an official authoritative answer, not the diagnosis of celiac/villous atrophy itself, but the authoritative command that I "should" go completely gluten-free. Which at first I thought DID require the official celiac/villous atrophy diagnosis.  I wanted that so badly that I went to a holistic doctor back when my regular doctor told me 100% gluten free was NOT necessary. It turns out she was being wise, because I had yet to be tested, But I didn't know that, I thought she was being equivocal about me maybe being celiac. Looking back she should have drawn blood right then but at that point in time I was already feeling so much better just getting off the sugar roller coaster she thought that might have been all I needed to fix me. But my rashes, etc. continued getting worse and so I went back but I digress...

 

The holistic doctor said, just based on my symptoms, "Of course you have gluten enteropathy. Go 100% gluten-free, that is a given. On to other things...."

 

Then he tested me for billions of other things, probably all consequences of celiac, but all stuff I don't necessarily need to know right now. It's too much coming at me. Such as exactly what bad bugs are in my gut, how screwed up are my hormones, and so on. It happens that didn't satisfy me, not that I didn't believe him, but at heart I guess I am kind of a "by the rule" person and need to hear it from the conventional medical system, as screwed up as it is. I got the idea everyone who walks into the holistic doctor clinic gets a gluten diagnosis and so it was not terribly credible, although I believe he was correct.

 

Alternative medicine is another option, if you are driven to it by the lack of care from regular medicine. I don't know what holistic medicine is like in Canada. Here, the guy knew his stuff and was very up to speed with gluten sensitivity. But he wanted me to do all kinds of colonics and things that maybe would help (I don't know anything about them) but I simply cannot manage those things right now. I don't know if they are scientifically proven, I don't have the time, I don't have the money, and I just want to see what going gluten-free can do for me first, so I hesitate to mention alternative medicine, you have to beware and not be sucked into a belief system that may or may not be credible.

 

But I am putting out options, just to illustrate that you are in the driver's seat and you have pathways to explore. And realize that going back to the doctor is one of them, he needs to go to the next level with you, and if he doesn't after you go back and say you're still sick and still don't have answers, I would almost say he is committing malpractice NOT to give you an endoscopy. Just because you have lower gut findings does not prove the absence of upper gut problems.

 

For me, I went back to my regular doctor and, now she used "y" and did the blood test which by then was too late, I had sero converted, if it had ever been positive, but when I gave her my HLA-DQ2 result and she looked back at my history, that convinced her I need to be completely gluten-free. For me, it was the authoritative command I needed to motivate me. For me the biggest issue is not my own motivation, but my needing ammunition to talk to my family. My siblings and my children, and even my mother, all have symptoms of gluten issues, but it is hard to slap these people awake. So I talked frankly and openly with my doctor. "What can I say to my family, are you telling me that I have a definite diagnosis that I can use to tell them they have a first degree family member with Celiac Disease?" Her answer was "yes". Officially, on paper, my diagnosis is "celiac or NCGS" because neither has been proven or disproven. But for me I don't need anything more, because the treatment is identical - a completely gluten free diet. And I have the blessing of my doctor to tell my family they have a sister/mother/daughter seriously ill because of gluten and they really need to look into their own health via gluten-related disorders.

 

Sorry this is so long but I'm hoping my own journey will make you feel less alone. My solutions might not be your solutions, but I'm hoping to help shed a little more light for you. All the responses you've gotten in this thread are great. These people know what they are talking about.

 

The blood tests, yes, there are ALL kinds of "celiac panels" and the doctors have a dozen they can pick and choose from, of varying cost. I don't know how the system works in Canada, are doctors penalized for expensive testing? Are they rewarded for low cost per patient? Do they track that kind of thing in the system? I don't know but if they do then I would be doubly suspicious that you are only getting minimal care. It might be that you must return and "re"-complain more often to get to the same level of care that you'd get from an average doctor in the U.S. who is not yet tangled in a system that tracks "cost efficiency" per patient. But you can go online to LabCorp or whatever testing lab and look up the various celiac panels they have.  For that matter, you can get the gene test through a lab through your doctor if he will order it. The fact that doctors so seldom order it tells me that many of them are just not yet aware of how widespread non-classic celiac presentation is.

 

Understand, any doctor who completed medical school before 2003 and possibly for many years after, probably thinks of celiac in terms of a growth-retarded child with diarrhea and malnutrition. If you are outside that box, God help you. At least in the U.S., and I suspect Canada also still grossly under-estimates its celiac population. For example, it is known that celiac is associated with type I diabetes. Any child who gets type I should immediately be tested for celiac. I doubt this is happening, but it should.

 

Thank you so much for typing up the reply. You have put together what I have been feeling so well. Most of the frustration comes from the fact that it would be difficult to tell a layperson, and family members that the diet needs to be taken seriously without a doctor's note saying so. My mom (who has no autoimmune issues) thinks eating bread is fantastic for the body, and nobody in their right mind should avoid it. To give you an example, my mom did not listen to me when I told her that the bread I normally ate was giving me stabbing pains whenever I had it for breakfast. When the GI doctor completed my celiac blood test and told me to avoid dairy, wheat, etc. was when she made a conscious effort to not include it in my diet (for e.g. everyone would eat roti, but she was ok with me eating rice). Now that my celiac test is negative, she's pushing me to go back to eating everything normally. Without an official diagnosis, it's so hard to tell her, "mom I know you want the best for me, but I absolutely.cannot. have this!" :( But anyway. Thank you.


  • 0

Canadian undergraduate student in 3rd year, studying Psychology and Speech Communication. Hoping to go into rehabilitation sciences!  B)

  

Dx with: 

Hashimoto's thyroiditis - 22/09/12

benign paroxysmal positional vertigo (bppv) - 18/05/13

irritable bowel syndrome - 21/06/13 

HLA-DQ8 gene ~ heterozygous (moderate risk for celiac) - 29/11/13

 

-> underwent a colonoscopy on 24/08/13, showed mild focal colitis + lymphoid hyperplasia (aka inflammation) in terminal ileum


#27 GFinDC

 
GFinDC

    A little farting never hurt anybody... :-).

  • Advanced Members
  • PipPipPipPipPipPip
  • 4,147 posts
 

Posted 03 September 2013 - 06:55 AM

Hi 0range,

 

You said you weren't sure you could stick to 100% gluten-free.  There is a reason that the gluten-free diet needs to be 100%.  Celiac disease is an autoimmune condition.  NCGI is also autoimmune although a different process.  If you think about the last time you got a cold, how big was the germ that made you sick?  Do you remember seeing it?  My guess is you didn't see it, because it was way too small to see.  How about measles?  Have you had a measles immunization?  If you did you probably haven't come down with measles even though those germs still exist in the environment.

 

Our immune system protects us from very small amounts of germs and such.  It is pretty darn sensitive to be able to do that job.  Once the immune system learns to kill an invader it doesn't generally let that invader in the body again without a fight.  When it learns that gluten is an invader it reacts to it like it would any invader.  It attacks.  In our case it attacks the gluten in our guts and the villi get caught in the crossfire.  That immune reaction may last for weeks to months, depending on the person.  So even a small amount of gluten can cause problems for quite a while.


  • 0
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

#28 0range

 
0range

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 86 posts
 

Posted 04 September 2013 - 02:44 PM

I really appreciate this everyone. Thank you so much for your advice. I will push for an endoscopy before starting the gluten-free diet and if it isn't possible I will start it regardless.
  • 0

Canadian undergraduate student in 3rd year, studying Psychology and Speech Communication. Hoping to go into rehabilitation sciences!  B)

  

Dx with: 

Hashimoto's thyroiditis - 22/09/12

benign paroxysmal positional vertigo (bppv) - 18/05/13

irritable bowel syndrome - 21/06/13 

HLA-DQ8 gene ~ heterozygous (moderate risk for celiac) - 29/11/13

 

-> underwent a colonoscopy on 24/08/13, showed mild focal colitis + lymphoid hyperplasia (aka inflammation) in terminal ileum


#29 0range

 
0range

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 86 posts
 

Posted 04 September 2013 - 03:05 PM

My dad recently had an endoscopy of his stomach, since he has intestinal metaplasia. Because he does not have a h.Pylori infection doctors are predicting that this may morph into autoimmune atrophic gastritis :( this makes for 3 AI diseases. I think they also looked at his duodenum and according to the reports it looked normal. Not sure if they took any biopsies or how many. I guess my question is this, that even in the absence of celiac disease, can people with AI problems benefit from avoiding gluten in their diets?
  • 0

Canadian undergraduate student in 3rd year, studying Psychology and Speech Communication. Hoping to go into rehabilitation sciences!  B)

  

Dx with: 

Hashimoto's thyroiditis - 22/09/12

benign paroxysmal positional vertigo (bppv) - 18/05/13

irritable bowel syndrome - 21/06/13 

HLA-DQ8 gene ~ heterozygous (moderate risk for celiac) - 29/11/13

 

-> underwent a colonoscopy on 24/08/13, showed mild focal colitis + lymphoid hyperplasia (aka inflammation) in terminal ileum


#30 IrishHeart

 
IrishHeart

    Warrior Princess

  • Advanced Members
  • PipPipPipPipPipPip
  • 10,558 posts
 

Posted 04 September 2013 - 03:10 PM

 I guess my question is this, that even in the absence of celiac disease, can people with AI problems benefit from avoiding gluten in their diets?

 

 

YES! 

 

If I still had my beloved Dad (and given what I know now?) he would be on a G F diet this very minute!!.

Since I can recall, even as a babe, he had several GI issues and drank Maalox like it was water (ulcers, h.pylori, acid reflux, mysterious intestinal bleeds and chronic anemia requiring dozens of blood transfusions for 8 years...) he had renal failure in the end, but there is no question it was all from long UNdiagnosed celiac. And I was following the same path of the slow death until I made it stop.

 

shall I go on? no need, right? :) 

 

Honey, seriously...you and your Dad need to be G F ...IMHO

 

and yes, have the endoscopy with biopsy..and no matter what, please, just  try the G F diet.

 

We tell you the truth, based on our own experiences and long medical histories. No doctor "gets this".


  • 0

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif





0 user(s) are reading this topic

0 members, 0 guests, 0 anonymous users

Celiac.com Sponsors: