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

[0range]

Hi everyone.

The doctors' office told me today that my blood test for celiac was negative. Two of my doctors recommended me to do the test, but it looks like that wasn't the answer to what is going on. I don't have the results on me, but hope to post once I get them. At this point I've slowly begun to accept my 'undiagnosis' of IBS by my doctor, and will start a low FODMAP diet this month. A colonoscopy revealed inflammation in my colon at the site between my small and large intestine, possibly caused by a virus my body had previously. The inflammation is likely what caused my on/off rectal bleeding with joint pain and fever for 4 years but I don't know if it entirely explains the new symptoms I have developed this year. Today is my last day of antibiotics and bloating-wise I'm not doing too great! Sigh, I am hoping that once I start my round of probiotics, it will get better. I'm tempted to blame everything on my thyroid including my vertigo. Doctors say my thyroid levels are perfect. My TSH is currently at a 3.00 (0.3 - 5.00 mIU/L), T4 is 16 (9 - 23 pmol/L) and T3 is 5.0 (3.5 - 6.5 pmol/L) but I feel quite hyper if it is any lower so this is where my doctor has kept me. Is it likely my hormones are all a little off balance? Is anyone else in this boat? I'll post my symptoms here.. just wondering if doing an elimination diet would work for me to figure out if I do indeed have any food intolerances. I'm beginning to feel it is all in my head since all my reports look normal (CBC, celiac, colonoscopy, etc.). Below are symptoms that all more or less appeared this year, with the exception of Hashimoto's. I felt quite fine before my dx of Hashimoto's (just tired and had a puffy face) but it seems like my body has been wrecked by some kind of autoimmune hell! 

 

* (treated) hypothyroidism due to Hashimoto's 

* bloating

* purid gas (har XD)

* constipation with alternating watery diarrhea

* unhealthy looking stool with "corn" pieces and little black pieces (sorry, TMI!)

* tinnitus

* visual snow

* low blood pressure

* vertigo, feeling of being "off balance"

* high pulse rate

* chronic colds that last for months

* extreme brain fog

* inability to concentrate / remember

* heart palpitations

* hypoglycemia? 

* numb hand

* increased sleepiness

 

Whenever I tell doctor my symptoms, they tell me they do not fit one actual diagnosis. And that either I am too worried (a possibility of course, seeing what my body is doing!) or that I have a multitude of issues going on. I was completely healthy (i.e. symptom-free) last year so I am not sure where all of these came from! 

[emilykay405]

I'm new to the Gluten Intolerance/Celiac thing. But when I read you're post, I have a few of your symptoms which are related to my Sjogren's Syndrome. Have you talked to anyone about a possible autoimmune disorder (outside of Celiac)?

 

My 'journey' started in Feb. 2012. My health was just fine outside of morbid obesity. I completed two 3 month rounds of a fitness program from Beachbody with no problems. Then over the summer I got a series of sinus infections that WOULD NOT go away. Some of them coupled with UTIs. Thankfully, I've been seeing my primary for a loooong time and he was quick to send me to an internist and eventually to a Rheumy. I was officially diagnosed with Sjogren's Syndrome in May 2013 following a positive lip biopsy.

 

The blood tests that are run for any autoimmune disease (and I think Celiac, someone else will need to chime in here...I haven't actually seen my test results but I know my GI mentioned at least one test that I knew would be positive because of the Sjogren's) are Antinuclear antibodies (ANA). A positive test for ANAs should lead a doc to do further testing but as with some blood testing, there is a chance of a false positive. For Sjogren's they look for Ro/SSA and La/SSB. The ANA test doesn't just help diagnose Sjogren's, it's also used for other autoimmune diseases, too.

 

Hashimoto's is also seen with Sjogren's.

 

My symptoms at the time included major fatigue, muscle weakness/pain, joint pain, hand/arm/foot numbness and brain fog along with the sinus issues and tummy troubles. I didn't have any issues with dry mouth or dry eyes. Since then I have noticed that I don't produce tears like I used to when crying.

 

Anyway, I kind of went on a ramble, but hopefully it helps.

[0range]

I'm new to the Gluten Intolerance/Celiac thing. But when I read you're post, I have a few of your symptoms which are related to my Sjogren's Syndrome. Have you talked to anyone about a possible autoimmune disorder (outside of Celiac)?

 

My 'journey' started in Feb. 2012. My health was just fine outside of morbid obesity. I completed two 3 month rounds of a fitness program from Beachbody with no problems. Then over the summer I got a series of sinus infections that WOULD NOT go away. Some of them coupled with UTIs. Thankfully, I've been seeing my primary for a loooong time and he was quick to send me to an internist and eventually to a Rheumy. I was officially diagnosed with Sjogren's Syndrome in May 2013 following a positive lip biopsy.

 

The blood tests that are run for any autoimmune disease (and I think Celiac, someone else will need to chime in here...I haven't actually seen my test results but I know my GI mentioned at least one test that I knew would be positive because of the Sjogren's) are Antinuclear antibodies (ANA). A positive test for ANAs should lead a doc to do further testing but as with some blood testing, there is a chance of a false positive. For Sjogren's they look for Ro/SSA and La/SSB. The ANA test doesn't just help diagnose Sjogren's, it's also used for other autoimmune diseases, too.

 

Hashimoto's is also seen with Sjogren's.

 

My symptoms at the time included major fatigue, muscle weakness/pain, joint pain, hand/arm/foot numbness and brain fog along with the sinus issues and tummy troubles. I didn't have any issues with dry mouth or dry eyes. Since then I have noticed that I don't produce tears like I used to when crying.

 

Anyway, I kind of went on a ramble, but hopefully it helps.

 

That's interesting because I've had dry eyes for quite a few months! Not a listed symptom because I thought it was thyroid related. Mouth isn't exceptionally dry, but yes, I do worry that I may have 'set off' another autoimmune disease unknowingly and doctors aren't really looking into it. My dad has Hashimoto's, along with pernicious anemia, and the latter was not diagnosed for a while. 

[bartfull]

You could have non-celiac gluten intolerance. With that, you won't test positive for celiac but they say the symptoms are often WORSE than for those who Do have celiac. If you try going STRICTLY gluten-free for about three months and notice an improvement, that could be an answer to at least part of your problem.

 

Another thing that comes to mind is a tick bite. There are so many tick-borne diseases now. Lyme disease is only one of them. They are hard to test for. A friend of mine got so sick they thought she was going to die and although they were pretty sure it was from a tick bite, they never did get a definitive answer. She eventually got better but it took a long time.

[Gemini]

Orange......I need your attention here.  You have Celiac Disease and need to go gluten free.  I'll tell you why........I have Celiac, Sjogren's, Hashi's and Reynaud's.

These all can come with un-diagnosed Celiac Disease.  Your immune system will continue to look for things to attack when you are eating gluten and shouldn't be. It all boils down to inflammation, which you know is one of your problems.  The words in your post that jumped out at me......IBS, irritated colon seen on colonoscopy, vertigo, bloating, Hashi's, brain fog.  I mean, do I really need to go on?  

 

Some people never trip an antibody test and there are a number of reasons why that can happen. It would be extremely helpful if you could post your Celiac panel results. You are now in the Doctor Hell Hole where they will treat you for every little symptom you have when all of these are most likely caused by Celiac and will go away if you go strictly gluten-free.  Your TSH is a little high but if you feel hyper when they up your thyroid dose, then I wouldn't increase it BUT....did they try a tiny increase or a bigger increase?

 

Did they not do an endoscopy on you?  You could ask for one or just go gluten-free, for a dietary trial.  Either way, you sound like a screaming Celiac to me and may continue to develop other AI problems if you keep eating gluten. Trust me, you don't want that to happen!  I am doing fine for someone with 4 AI diseases but I have been gluten-free for 8 years so healing has happened and my immune system is much calmer these days. I'm sorry you were unable to get the "official diagnosis"

from the AMA but the time has come for you to take control of things and know that your problems are very common to Celiac and having Hashi's really ups the chances of you having Celiac. Plus, your father's 2 illnesses are also strongly linked to Celiac.  Sometimes the diagnosis comes from many little clues and not from a diagnostic test.  And this cute little name.......Benign Paroxysimal Positional Vertigo.......is Celiac vertigo.  I had it so bad, I used to have to sit on the floor and hold onto something I was so dizzy.  It all went away after being gluten-free for a bit and has never come back.  I didn't need a doctor's help, either!  

 

I would forget the FODMAP diet and concentrate on going gluten-free for now.  Don't take any antibiotics unless you really need them for a serious infection because they will further mess your gut up.  And you know what doctors also do that is really annoying...they blame everything on a virus.  That's what they say when they don't know what's going on.

 

Don't forget to take probiotics too!  Good luck and let me know if you have any questions.

[cyclinglady]

I agree with Gemini (and the others)!  Go gluten free and keep a food diary to help identify food intolerances.  When I had "IBS" (it's just a dumping diagnosis), I found out that my intestinal symptoms went away when I identified my food intolerances and recovered from being on antibiotics for two years! It was at that time that I was diagnosed with Hashi's.   For all I know, I may have had celiac disease back then or at least an intolerance to it.  I could have prevented all the damage to my bones!

 

My husband's been gluten-free for 12 years.  No formal diagnosis.  Ask him if he'll ever go back to gluten.

[Celiac Mindwarp]

There are lots of symptoms there which do tie in with celiac or non celiac gluten intolerance. You might want to request an endoscopy, to see if there is any damage. Trying gluten-free for several months seems well worth a shot. Lots of us here are ncgi or self diagnosed and have turned our health around. FWIW I don't think this is in your head ( though gluten can affect you mentally in terms of anxiety, depression etc., and the vertigo).

Some of us uncover other food intolerances along the way, and dairy is common to begin with, though many people can reintroduce it later.

It can be helpful to start with healthy, unprocessed foods, and save gluten-free products for occasional treats. Meat, fish, fruit and veg, eggs.

Ask lots of questions, let us know how you get on.

[IrishHeart]

ORANGE said:
Whenever I tell doctor my symptoms, they tell me they do not fit one actual diagnosis. 

 

Yup, they do... Celiac.

 

Orange,

I had every single one of  the symptoms you listed, plus a couple dozen more.

I was even treated for supposed Hashi's for 2 years and that was not the issue at all.

Sure, my thyroid was malfunctioning & I had classic symptoms

but they are also  celiac symptoms (hair loss, edema, feeling cold) that have resolved off gluten.

Vertigo? oh man, that drove me insane. (still get it If I get hit by accidental cc)

I was told for years I had "IBS" (know what we call that on here? doctor speak for I Be Stumped)

I would write more, but all the others have already said it all.

Maybe your blood work was negative , but it does not necessarily mean you do not have celiac or that you are not just

a 'celiac-in-bloom".

Ask for a biopsy while you are still on gluten if you want to be sure, but then, go G F no matter what and see if you do not feel better.

I am guessing you will.

best wishes. 

[GFinDC]

You got some great advice already 0range.  They should have done an endoscopy at the same time as the colonoscopy.  But if they didn't, it is not too late to get one done.  Doctors don't know everything, and they don't have a perfectly reliable test protocol for celiac disease yet.  But you can test yourself for free.  Do the gluten-free diet for 6 months and see if it helps your symptoms.

 

The possible inflammation/virus near the junction of the small intestine and large intestine could be an indicator of Crohn's disease.  But it could be something else too.

 

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.
Get your vitamin/mineral levels tested also.
Don't eat in restaurants
Eat only whole foods not processed foods.
Eat only food you cook yourself, think simple foods, not gourmet meals.
Take probiotics.
Take gluten-free vitamins.
Take digestive enzymes.
Avoid dairy.
Avoid sugars and starchy foods.
Avoid alcohol.
Watch out for cross contamination.

Helpful threads:

FAQ Celiac com
https://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101
https://www.celiac.com/forums/topic/91878-newbie-info-101/

 

NCGI stuff:

 

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

Innate immune response in AI diseases
https://www.celiac.com/articles/23149/1/Gliadin-Triggers-Innate-Immune-Reaction-in-Celiac-and-Non-celiac-Individuals/Page1.html

[nvsmom]

Ditto the others, it sounds like celiac disease to me, and it looks like it started you into the world of hashi's and probably other autoimmune issues.

 

I too had many of your symptoms, and a few you didn't list, and they were all celiac disease and hashi's related. I also have a AI thombocytopenia that I don't doubt was triggered by untreated celiac disease. Go gluten-free, give it a good 6 months... many of us get worse before we get better so don't just give the diet a couple of months, give it half a year at least. I felt worse at 3 months gluten-free than I did before going gluten-free, but I feel healthy now, after another year has gone by. 

 

Your TSH is pretty high for hyper symptoms - that surprises me.  How are your free t4 and free T3? Those give a MUCH more accurate picture of what hormones are available for use than the inferior T4 and T3 would. Normally those with hashis seem to feel their best when TSH is near a 1, and when free T4 and free T3 are in the 50-75% range of your lab's normal reference range, but this does vary from person to person so a TSH of 3 might be good for you. For me, I feel good with a TSH of 0.01, and a free T3 near the 75% point of my lab's range; when my TSH is a 3, I feel very hypo.

 

You might want to get your vitamin and nutrient levels checked too. some of your symptoms can be caused by low vitamin levels. The usual culprits are low B's (B12,6,2), D, A, iron, ferritin, potassium, magnesium, copper, zinc... I think I'm missing one... Anyway, you might be low in one or two but there is no way to check unless you check them all. Right now, the doctors' darlings are B12 and D but that's not always low for everyone; for example, my B12 exceeded the upper limit but my vitamin A is my low one.

[0range]

Thank you so much for the replies everyone! I hope to reply everyone individually once I get to the computer.

 

My dad has intestinal metaplasia in his stomach after years of gut issues starting in childhood. We are just monitoring it at this time. Is there a connection between metaplasia and celiac? I don't think he has gotten the testing done or had samples taken from his small intestine.

[0range]

Ditto the others, it sounds like celiac disease to me, and it looks like it started you into the world of hashi's and probably other autoimmune issues.

 

I too had many of your symptoms, and a few you didn't list, and they were all celiac disease and hashi's related. I also have a AI thombocytopenia that I don't doubt was triggered by untreated celiac disease. Go gluten-free, give it a good 6 months... many of us get worse before we get better so don't just give the diet a couple of months, give it half a year at least. I felt worse at 3 months gluten-free than I did before going gluten-free, but I feel healthy now, after another year has gone by. 

 

Your TSH is pretty high for hyper symptoms - that surprises me.  How are your free t4 and free T3? Those give a MUCH more accurate picture of what hormones are available for use than the inferior T4 and T3 would. Normally those with hashis seem to feel their best when TSH is near a 1, and when free T4 and free T3 are in the 50-75% range of your lab's normal reference range, but this does vary from person to person so a TSH of 3 might be good for you. For me, I feel good with a TSH of 0.01, and a free T3 near the 75% point of my lab's range; when my TSH is a 3, I feel very hypo.

 

You might want to get your vitamin and nutrient levels checked too. some of your symptoms can be caused by low vitamin levels. The usual culprits are low B's (B12,6,2), D, A, iron, ferritin, potassium, magnesium, copper, zinc... I think I'm missing one... Anyway, you might be low in one or two but there is no way to check unless you check them all. Right now, the doctors' darlings are B12 and D but that's not always low for everyone; for example, my B12 exceeded the upper limit but my vitamin A is my low one.

 

Thanks so much nvsmom! Yes I'm a strange one! Even when my TSH was >100 I didn't realize something was "seriously" wrong. I was just sleeping 12 hours a day, and gaining some weight on my cheeks.. but I thought that was just me being a university student! Some people told me that if their TSH is even slightly above the maximum lab range, they are not able to function. Maybe my body was used to it? Before that I was TSH 10 for quite a long time as well. I usually get very hyper when I am around 1: arm weakness, blurry vision, etc.

My free T3 and T4 are: 

FT4 is 16 (9 - 23 pmol/L) and FT3 is 5.0 (3.5 - 6.5 pmol/L)

 

What is thombocytopenia? I hope it has been treated! My doctor finally decided to run a Vitamin D test. I get my B12 checked yearly (it is smack in the middle of the range) but not much else. Are family doctors able to run vitamin/nutrient tests in Canada, or would we go through another route? Which part of Canada are you in? I'm in Southwestern Ontario

[0range]

You got some great advice already 0range.  They should have done an endoscopy at the same time as the colonoscopy.  But if they didn't, it is not too late to get one done.  Doctors don't know everything, and they don't have a perfectly reliable test protocol for celiac disease yet.  But you can test yourself for free.  Do the gluten-free diet for 6 months and see if it helps your symptoms.

 

The possible inflammation/virus near the junction of the small intestine and large intestine could be an indicator of Crohn's disease.  But it could be something else too.

 

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.

Get your vitamin/mineral levels tested also.

Don't eat in restaurants

Eat only whole foods not processed foods.

Eat only food you cook yourself, think simple foods, not gourmet meals.

Take probiotics.

Take gluten-free vitamins.

Take digestive enzymes.

Avoid dairy.

Avoid sugars and starchy foods.

Avoid alcohol.

Watch out for cross contamination.

Helpful threads:

FAQ Celiac com

https://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101

https://www.celiac.com/forums/topic/91878-newbie-info-101/

 

NCGI stuff:

 

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

Innate immune response in AI diseases

https://www.celiac.com/articles/23149/1/Gliadin-Triggers-Innate-Immune-Reaction-in-Celiac-and-Non-celiac-Individuals/Page1.html

 

Thank you so much for all the resources - greatly appreciated!   Yes I wish they did but I think most doctors are of the opinion that if your blood test is not positive, there is no need to get it done - so I was only able to get the colonoscopy procedure. I had some signs of IBD, minus the abdominal pain (blood in stool, with fever and joint pain) but my large bowel looked perfectly healthy - minus that small inflammation at that site. They biopsied that location for IBD but it did not show that, fortunately.

[nvsmom]

Thanks so much nvsmom! Yes I'm a strange one! Even when my TSH was >100 I didn't realize something was "seriously" wrong. I was just sleeping 12 hours a day, and gaining some weight on my cheeks.. but I thought that was just me being a university student! Some people told me that if their TSH is even slightly above the maximum lab range, they are not able to function. Maybe my body was used to it? Before that I was TSH 10 for quite a long time as well. I usually get very hyper when I am around 1: arm weakness, blurry vision, etc.

My free T3 and T4 are: 

FT4 is 16 (9 - 23 pmol/L) and FT3 is 5.0 (3.5 - 6.5 pmol/L)

 

What is thombocytopenia? I hope it has been treated! My doctor finally decided to run a Vitamin D test. I get my B12 checked yearly (it is smack in the middle of the range) but not much else. Are family doctors able to run vitamin/nutrient tests in Canada, or would we go through another route? Which part of Canada are you in? I'm in Southwestern Ontario

I didn't realize that was your free T's, they look pretty good. I can understand why you are feeling fine. . I felt hypo when my TSH was high and the same hypo when it was in the normal range... It was almost like a switch was pulled- I felt hypo until I suddenly didn't with no shades of grey.

My TSH never hit 100 though! Wow!

The thrombocytopenia is a clotting problem, it my case it was where the body attacks the platelets. It isn't very common, and it is under control... Thanks for asking.

And yes, your doctor should be able to order the tests, at least they can in Alberta, it's just that they often stop at D and B12, as you know. LOL

[0range]

I didn't realize that was your free T's, they look pretty good. I can understand why you are feeling fine. . I felt hypo when my TSH was high and the same hypo when it was in the normal range... It was almost like a switch was pulled- I felt hypo until I suddenly didn't with no shades of grey.

My TSH never hit 100 though! Wow!

The thrombocytopenia is a clotting problem, it my case it was where the body attacks the platelets. It isn't very common, and it is under control... Thanks for asking.

And yes, your doctor should be able to order the tests, at least they can in Alberta, it's just that they often stop at D and B12, as you know. LOL

 

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? 

[Lock]

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:

Open Original Shared Link

[0range]

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:

Open Original Shared Link

 

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! 

[nvsmom]

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).

[Gemini]

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.  

[0range]

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.

[emilykay405]

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.

[IrishHeart]

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?"  

[w8in4dave]

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

[Lock]

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.

[IrishHeart]

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.