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Member Since 26 Dec 2007
Offline Last Active Yesterday, 04:05 AM

#907370 Misdiagnosed With Celiac?

Posted by on 27 February 2014 - 06:01 AM

Hi Amber,


It makes sense to look back at your test results from the original celiac disease diagnosis.  But any tests you are doing now for celiac disease will automatically be negative since you have been gluten-free for a while.  The only way to get good celiac testing for now would be for you to do a gluten challenge for some period of time.  The whole point of the gluten-free diet is to eliminate the blood antibodies and villi damage, so it could be said it worked in your case!


But, that doesn't mean you don't have Crohn's or some other condition.  It is possible to have more than one GI condition at once.  My brother had both Crohns and celiac disease.


If you read up on a Crohn's forum you will find that some Crohnies do well on a gluten-free diet, and others don't see any improvement.  It's a variable thing for them.

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#906841 Is It Normal To Have Flare Ups During The Early Stages Of Healing?

Posted by on 22 February 2014 - 10:04 AM

Hi HM,


That's pretty typical symptoms I think, for many people.  Eating a simple, whole foods diet is a good way to avoid cc and gluten.  After you have healed up and are doing well, branching out and adding some processed gluten-free foods is fine.  The amount of gluten it takes to cause a reaction or flareup of symptoms is very low.  Plus our guts need time to heal and recover from the damage, and also to establish a new healthy gut bacterial flora.  Try reading through the tips below.  Are you following all of them?  You don't have to of course, but they may help you recover faster if you do follow them.

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 if it causes symptoms.
Avoid sugars and starchy foods. They can cause bloating.
Avoid alcohol.
Watch out for cross contamination.

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#906396 Iodine Patch Test (To See If You Need Iodine Supplement) Uncorn People May Ne...

Posted by on 18 February 2014 - 08:48 AM

I think these are the corn-free vitamins Barty found.  They do have 100% of the RDA for iodine, so that's good.  They are very short on selenium though.  But I guess you can't have everything, and trade-offs are necessary.  You could always eat a Brazil nut once a week to get your selenium.  They are, thankfully, corn-free.  So you  could get your basic iodine from these vitamins anyway.  And of course there is some in the foods we eat also.  There is supposed to be lots of iodine in seaweeds.  But you should be aware not to eat too much of it.




So who's going to hold notme! down for the iodine patch test?  Come on, notme!, you'll like it! :D  Of course, immediately after the iodine patch test, the tickle test will ensue!


Meanwhile, I am going to look for some canned beets next time I hit the grocery..


Personally, I think even if the iodine patch test isn't absolutely one 100% reliable, the tickle test will prove rewarding.


@ Diana,


Hi Diana,  selenium plays an important part if endocrine function, and thyroid function.  So make sure you are getting enough or little more than enough of it.


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#906378 What Are The Consequences Of A Lax Approach To The gluten-free Diet?

Posted by on 18 February 2014 - 08:03 AM

Hi BM,


It  might help to think about the basics of celiac disease.  Celiac is an autoimmune disease.  That means the bodies own immune system attacks it.  The immune system is very sensitive, and doesn't  mind attacking in force any forgein, dangerous invaders like germs or gluten.  And it doesn't stop making immune cells to attack until the invaders are dead, their children, their grandchildren, and the horse they rode in on.  It can take weeks to months for the immune response to taper off.  So if you are exposed to gluten every couple weeks in even small amounts, the immune reaction never stops.


You might not have heard of gluten ataxia.  Gluten ataxia is when gluten attacks the brain and causes damage resulting in problems with walking and coordination, speech, etc.  Gluten can affect any part of the body.


You might ask your friends how much anthrax or measles they would be willing to eat.


Remember, they aren't risking anything health wise by encouraging you to eat gluten.  They are scott-free whlie you suffer the consequences.  Maybe they aren't really friends.


Dr. Hadjivassiliou has done reseacrh on gluten ataxia.

Nuerological symptoms without gastro symptoms

Dietary treatment of gluten ataxia

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#906222 Mailbox Woes

Posted by on 16 February 2014 - 09:36 PM

Well ok.  Learn something every day they say.  Or at my age, give the faint appearance of learning something new.  So it seems I exceeded the max 75 conversation by a couple already.  Not sure how long ago that was, since there was never a message (ha ha!) about it.  But now I do see there is a lovely quota bar all filled up to 100% in my message folder on the left hand side.  Probably been there for  awhile, I suspect.  Anyway, I agree with Diana, I  am pretty sure!


Well, with helpful advice from mods etc I have cleaned out some messages and no longer have a slightly over 100% full message quota.  If only Diana had thot to send me a PM about my message store being full...  :D



Proudly only 53% full...  That's barely over half full! ....:)

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#906175 Iodine Patch Test (To See If You Need Iodine Supplement) Uncorn People May Ne...

Posted by on 16 February 2014 - 09:17 AM

Thanks Diane,


It's interesting that you saw different results after taking iodine than before.  Seems to be an indicator that it might work as a rough test anyway.  Quest does have an iodine test available.  I think someone asked about that, not sure who.



Clinical Significance

Iodine is an essential element that is required for thyroid hormone production. The measurement of iodine serves as an index of adequate dietary intake.


Barty came through with a corn free vitamin brand!  Way to go Bartful ! :)


Kind of sidetracking here.  Some people say you can test yourself for low stomach acid by eating beets.  Since we are  talking about alternative testing ideas I figured i'd throw that one out there.  I don't know if it works as a valid test or not,  I haven't actually tried it myself.





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#906067 Iodine Patch Test (To See If You Need Iodine Supplement) Uncorn People May Ne...

Posted by on 15 February 2014 - 06:37 AM

I've read about that iodine patch test Diane.  I have no idea if it works or not.  Have you re-done the test since you started taking iodine and seen a difference?

I'm going to relate a little story of personal history with iodine deficiency.  Maybe it will help make sense for some people.  At one point I decided to stop eating salt in my food.  So I didn't add salt to any food for 5 years.  Turns out my vitamins pills didn't have iodine in them  either, although I didn't realize that at the time.  One day I got the idea that maybe I was flirting with iodine deficiency.  So I decided to test it.  I got an apple and sprinkled iodized salt on it while I ate it.  After 15 minutes or so I started feeling quite a rush of energy, really jazzed up.  So I ate another salty apple, and another.  After a few days of this I no longer felt a rush of energy after eating the salty apples.  I still hate apples to this day.  (Ok that part is joke, I don't hate apples).

My point is that if you are iodine deficient and hypothyroid but then correct the deficiency by taking in some iodine you will know it.  You should probably feel the difference fairly quick, if your thyroid is still functional anyway.

I don't think there is any need to go over board on taking iodine if you are eating iodized salt regularly.  Your body doesn't need massive amounts of iodine to function.  And if you really are suffering from a deficiency you will feel the effect of correcting that deficiency.  If you don't feel any difference from taking iodine I doubt you really have a serious deficiency.  In which case all you need to do is take reasonable amounts of it in your multivitamin or use iodized salt in your food.

Think about it this way.  Iodine is recommended by some people as being absolutely nessacary and critical to the proper function of the body.  So if you are really deficient in it you should be suffering symptoms of that deficiency.  And when you correct that you should feel a restoration of function and relief from symptoms quickly.  If nothing changes then you probably aren't severely deficient.  And that means you don't need to super size your iodine intake.  I do agree we need iodine of course, just not in enormous or unusual amounts.

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#905857 Not Sure What I Have

Posted by on 13 February 2014 - 06:47 AM

Hi Glux,


I don't know if you are aware that most soy sauce has gluten in it?  So Chinese food is not safe unless it is made with gluten-free soy sauce.


The immune reaction in celiac disease can last for 6 weeks to months.  So you can't expect to eat Chinese food one week and feel just fine with no symptoms for the next 3 or 4 weeks.  You said you were not sure you have a gluten reaction?   But you said earlier you had done a challenge by eating bread and had definite reactions.  I know it can be confusing trying to figure these food issues out on your own.  Especially when your gut is irritated and seems to react to just about anything you eat.  The way to get around the confusion is to take control of your diet.  Simplify  the diet and reduce the chances of getting gluten in your food.  Don't eat out at all for several months.  Only eat whole foods that you cook yourself.  Reduce the number of different food ingredients as much as possible for a while.  The fewer the number of foods you are eating, the easier it is to identify one that is causing a problem.  That's the idea behind elimination diets.


Your diet seems to be a problem and cause symptoms for you.  The answer is in your control because you control what you eat.  But it may take a much simpler eating plan to figure it out.

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#905532 Still Feeling Awful. All The Time.

Posted by on 09 February 2014 - 06:40 AM

Hi Upsilamba,


Sorry you are going thru a rough patch there.  It may seem like it will last forever but it won't.  Your body does need time to heal, and your gut needs to establish a new bacterial balance.  Plus when your digestion is off you tend not to absorb vitamins and minerals well.  I take a Nature Made brand multi plus 50 for men.  They have a version for women also that has iron in it.  It might be worth a try.  I recently started taking some extra selenium and that helped my energy levels.  Don't over do it on the selenium tho.


Are you taking digestive enzymes and pro-biotics?  Those can both help with digestion.  Sometimes other foods can cause symptoms for people.  Dairy is a biggie, but also soy, eggs, gums, corn or any of the top 8 food allergens.  If things don't improve after a month you might want to consider additional food intolerances.  Try an elimination diet and see if that helps?

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#905352 A Word Of Caution To Preliminary/self Celiac Diagnosis

Posted by on 07 February 2014 - 07:10 AM

Hi MMarksbury, and welcome to the forum! :)


You have an interesting story.  Sick for years and then one positive test for antibodies.  It is better to do all the tests for gliaden antibodies because sometimes people will have a reaction on one test but not another.  Or a reaction on just one of the tests but none of the others.


Here's a list of the antibodie tests for celiac disease


Anti-Gliadin (AGA) IgA
Anti-Gliadin (AGA) IgG
Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Deamidated Gliadin Peptide (DGP) IgA and IgG
Total Serum IgA


Another possibility for your situation is NCGI (non-celiac gluten intolerance).  NCGI causes symptoms like celiac disease but doesn't cause villi damage.  There is research being done on NCGI but not much is known as the moment.  NCGI may or may not cause long term damage to the body.  Although they cause similar symptoms, celiac and NCGI are not the same thing, so the tests for celiac disease will not show the presence of NCGI..


Here are a few articles about it for info.


Non-celiac wheat sensitivity article

Innate immune response in AI diseases

Gliadin Triggers Innate Immune Reaction in Celiac and Non-celiac Individuals

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#904753 Unsure About Testing

Posted by on 02 February 2014 - 07:21 AM

Hi Hchenery,


Welcome to the forum! :)


Antibodie testing is useless after you stop eating gluten.  Unless you do a fairly long period of eating gluten again it just doesn't work.  After all, the whole point of the gluten-free diet is to lower the antibodies so they don't do damage to the body.  Some doctors don't seem to understand that though.  Duh!


It is possible to have nuerological symptoms mainly and not much in the way of gut symptoms.  Also some people get the skin form of celiac disease DH (dermatitis herpetiformis) but don't show gut symptoms right  away.  It almost seems like if the immune response is targeting one body organ it concentrates it's damage there and leaves other areas alone.  But usually that changes over time and gut symptoms start up or other organs are affected later.


Dr. Hadjivassiliou has done a lot of important research on nuerolgical affects of gluten.

Nuerological symptoms without gastro symptoms

Dietary treatment of gluten ataxia


You could ask your dr to test you for vitamin and mineral levels.  Celiacs often have some vitamin deficiencies before going gluten-free.

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#904512 Diagnosis Received

Posted by on 30 January 2014 - 03:47 PM

Hi Simon,


Here are a few threads about NCGI.  Research has proven that it exists, but they don't know a whole lot about it yet or what kinds of damage it may do over time.  NCGI does cause an immune response, but a different response than in celiac disease.  So how serious is it?  Nobody knows for sure right now.  It's interesting though that there is a possible link in Crohn's disease and the innate immune response.


Since no long term studies have been done on NCGI that consequences of it are just a guess at this point.  But we do know the inflammation can cause plenty of problems in the body.


If you can switch to eating mostly whole foods your chances of getting into hidden gluten are much lower.


Non-celiac wheat sensitivity article

Innate immune response in AI diseases

Gliadin Triggers Innate Immune Reaction in Celiac and Non-celiac Individuals

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#904412 Am I Likely To Be Dx-Ed? Please Help!

Posted by on 29 January 2014 - 09:05 PM

Hi Scared,


You can call Quest Diagnostics and ask them about testing.  You don't need a doctor's permission to sue their testing service.  But you would need to go to an office to have the blood drawn.  There are other testing services but I don't remember their names right now.


You might ask the doctor why there is gut atrophy ?  There has to be a reason for it.  If he says it is not celiac disease he should be testing you for the other possible causes.  The current recommendation for celiac biopsies is 6 to 8 biopsy samples.


The problem with waiting till later for the testing is you would need to do a gluten challenge and that can be very unpleasant.  Of course you don't have to be diagnosed by a doctor to eat gluten-free.  Anyone is free to choose to eat what they want without a dr's permission slip.  It's just if you are definitely wanting a diagnosis it is much better to do that testing now rather than later.


Quest Diagnostics


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#904332 Am I Likely To Be Dx-Ed? Please Help!

Posted by on 29 January 2014 - 10:02 AM

I suggest you still get the blood tests done.  If your doctor won't do them maybe another doctor will.

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#903029 ~So Confused! Help Me Understand! Dr. Saying My Ms Isn't Ms It...

Posted by on 17 January 2014 - 11:27 AM

This Dr. Hadjivassiliou has done a lot of the newer research on celiac affects on the brain.  Celiac can cause UBO's (unidentified bright objects) on MRI's.  If you were on immune system supressers when you had the celiac testing, the testing wouldn't have worked right.  Useless testing basically.  Sometimes celiacs get what we call brain fog on this forum.  Might be similar to what you described.

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