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Member Since 26 Dec 2007
Offline Last Active Yesterday, 05:02 PM

#928812 First Time Posting And Desperately Seeking Answers And Support

Posted by GFinDC on 29 August 2014 - 03:59 PM

Hi Dswaterman,


It is somewhat common for people when first going gluten-free to develop more noticeable symptoms as time goes on.   The immune system may get more sensitive to gluten, or something else might be going on, like symptoms being more noticeable since they are less frequent.  The immune system is pretty serious about keeping us alive.  When it detects an invader it goes on the attack, and doesn't stop for weeks or months.  So each time you let a little gluten slip into your diet you are priming the immune system for another round of attack.  Even if it is just a little unavoidable gluten at a restaurant, the immune system don't care.  It's going to go full bore boogie on it.


The way to temper symptoms is to avoid them in the first place.  To stop taking unnessecary chances when eating out etc.  To plan ahead and bring your own food when needed.  Or just settle for a salad or fruit if that's all you can get.


It's a learning process going gluten-free.  The simpler you keep your diet the less chance of a slip-up there is.  It also makes sense to double-check everything you consume.  Are your vitamins and meds gluten-free?  How about you coffee creamer or tea?  Spices?


Getting better at being gluten-free means making some changes in our approach to eating.  For a celiac, eating gluten-free is a medical diet, not an option.  A good way to start is to stick with whole foods you cook yourself at home.  That way you have only your self to question about ingredients.


Helpful threads:

FAQ Celiac com

Newbie Info 101

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#925345 Is This Likely Celiac Disease?

Posted by GFinDC on 26 July 2014 - 04:22 AM



You should ask the doctor to do 6 to 8 biopsy samples during the endoscopy.   That's the recommendation from some medical board altho I forget which one.  One sample is not enough, and many doctors will only do one or two unless they are told to do more.  Can you look up celiac support groups in your area?  They may have ideas for doctors who are familiar with celiac disease.  It's best to choose a doctor who is familiar with diagnosing celiac and treating it as many are not up to speed on the current guidelines.  There is a doctors sub-section on this forum which might have someone listed for your area also.  Try searching that too.

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#924505 Help! Positive Blood Test For Celiac, But Nothing Abnormal On Biopsy. Adv...

Posted by GFinDC on 20 July 2014 - 07:34 AM

HI Valerie,


I suggest you consider yourself celiac based on the positive blood antibodie results.  The endoscopy results are not always positive for various reasons.  For one thing they can only reach the first 5 feet or so of the small intestine.  But the small intestine is around 20 to 22 feet long.  So they aren't even testing the majority of it for damage.  You could have villi damage at 6 feet and the doctor would never see it.


Antibodies aren't present for no reason.  The immune system learns to make them in response to an irritant.  And the immune system learns real good.  It doesn't forget to make antibodies just because your doctor says something.  It'll keep making antibodies and fighting the gluten for the rest of your life.  Whenever you consume gluten the antibodies will kick into action and their lifetime is weeks to months.  So small amounts of gluten can cause weeks of symptoms.


Otherwise it's all a lot of fun tho.  :)  Eating gluten-free gets easier after you've got some experience at it.  Some people find that staying away from processed foods for the most part and eating whole foods instead is better at the beginning.  The fewer processed foods we eat the less chance of gluten sneaking into the diet there is.

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#924420 Peanut M&ms

Posted by GFinDC on 19 July 2014 - 04:51 AM

I don't eat the peanut or regular M+M because they have dairy in them and I react to that.  Just saying because it's not always gluten that makes us sick.

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#917407 Joint Pain After Being gluten-free 2 Years - Could Celiac Still Be Causing That?

Posted by GFinDC on 23 May 2014 - 04:08 PM



You could try some food eliminations to see if they affect your joint pain.  Nightshades are one food group that would be good to remove, (peppers, tomatoes, potatoes, eggplant).  Soy is another problem food for many.  It doesn't cost any money to eliminate the foods, and no doctor visit, so it is an easy thing to test yourself on.

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#916868 "follow" Members To See What They Say, Like Facebook?

Posted by GFinDC on 21 May 2014 - 03:59 AM

You can also try clicking the "view new content" button on the top right of the main forum screen.  That lets you see a list of all the threads with recent posts.  Then you can scroll through that list and see who made the last post or who started the thread.

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#914783 It Was Supposed To Be Over At Gluten Free! Help :(

Posted by GFinDC on 02 May 2014 - 05:11 AM

Hi AC18,


Here's links to the beginners info threads.  Something else people sometimes forget to check is vitamins and medicines they may be taking.  They may have gluten also.  Maybe if you give us a list of things you eat we can help spot problems.  If there are any.


Your doctor told you everything looked pretty good right?  Well, that's stretching it a bit.  The endoscope can only see the first 5 feet or so of the small intestine.  There are 20 to 22 feet of gut in the small intestine.  So they can't even see most of it.  Saying the first 5 feet looks fine and assuming that means the rest is fine is a mistake.  There's no way for them to know that without a different test procedure.


Being celiac sometimes means we need to learn how to be patient with our bodies.


Helpful threads:

FAQ Celiac com

Newbie Info 101

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#914055 Omission Beer - Ok, I'm Omitting It.

Posted by GFinDC on 26 April 2014 - 08:08 AM

Here's some information on the Omission beer situation.



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#912400 Doctor Refuses To Test 6 Year Old - What Would You Do?

Posted by GFinDC on 12 April 2014 - 10:39 AM



Can your doctor prove she is getting adequate nutrition?  Celiac can cause mal-absorption and that could cause the dental enamel problems and the fingernail ridges.  The doctor should do a test for nutirional levels and look for anything that is low.  They should not dismiss her symptoms without testing for the obvious causes.

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#911441 My Body Hates Me! I Just Want Someone To Talk To.

Posted by GFinDC on 04 April 2014 - 09:32 PM

Hi Msholland,


It seems you are in a bit of a pickle.  You already know that gluten and dairy both make you sick.  And now when you eat gluten a new symptom has appeared, a skin rash that itches. Well, it itches on your fingers anyway. even if it doesn't itch elsewhere.  It is a symetrical rash though, and that aspect matches dermatitis herpetiformis (DH).  For "some reason" the IgA antibodies IN DH cause itching.  The symetrical aspect of your rash seems important to consider.


You have experienced a progression of symptoms as far as the rash goes.  It is getting worse (per your description) every time you eat more gluten.  It started out not too bothersome but now it is getting bad.


It might help to check with some of the DH section peeps who have experience with DH.  It seems tome that DH peeps sometiems don't "pass" the standard gut antibodie test but still have celiac disease.  The antibodies concentrate their attack on the skin first, instead of the gut with them.  Eventually that changes after time with continued gluten exposure and they have gut symptoms too.  At least that's my understanding.  But at the beginning they have trouble passing the standard gut related testing.  That 's why the skin biopsy is an important test for DH.


That seems to the same situation with people who have gluten ataxia as a primary symptom.  They have symptoms from antibodies attacking the brain before they get gut related symptoms later on.  It's progression of symptoms, sometimes starting in the gut, but sometimes starting other places in the body.


Anyway, I think you should carefully consider whether or not it is worthwhile to you to get a formal diagnosis via gut or blood testing.  Some forum members have reporteed developing DH during a gluten trial and it taking months to recover from the rash that resulted.  And these were sometimes people who didn't have DH symptoms before.


So, is it worth it to you to take that risk?  You are looking at possibly months of extremely itchy rashes, and also reducing your iodine intake in order to recover.  It could take more than months to recover in fact.  Sometimes people deal with the rashes for a year or more.  It's not fun from what I've read.


Celiac diseae testing is not perfect at this point.  There are a lot of improvements that it would be nice to have in place.  But they aren't here right now, and it may be years before improved, definitive testing is available for all aspects of gluten problems.  Plus many doctors don't understand proper testing procedures for celiac anyway.


If you can find a local celiac disease support group they might be able to suggest a good dr.  There is also a doctors forum on this site that has suggestions for doctors in some areas.  I suggest you also check into the DH section of the forum for firsthand info regarding DH.  I don't have it msyself (thank God) but some other members do and can offer great advice.  I hope you tread carefuly with gluten challenges, because once DH gets established it can get very bad fast, and it doesn't go away easily.

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#910638 Forum Section For Non-Celiac On The Gluten-Free Diet?

Posted by GFinDC on 27 March 2014 - 09:13 PM

I was thinking it might be good to have a section of the forum for non-celiacs who are following the gluten-free diet.  There lots of people interested in eating gluten-free these days for various reasons.  Celiac disease is one very  important reason to eat gluten-free.  But other people might want to eat gluten-free because they have health issues that might be improved even though they don't test positive for celiac disease.  Some examples would be people with NCGI (non-celiac gluten intolerance) which there are no standard medical tests for right now.  Another might be people with Crohn's disease, who sometimes follow the gluten-free diet and find it helps their Crohn's symptoms.  Another group would be diabetics, who might sometimes follow a very low carb diet to control their glucose levels, which means they end up essentially following a gluten-free whole foods diet.  Then there are a large number of people who just want to try gluten-free to see if it helps their symptoms that haven't got an official doctor's diagnosis yet.


There is a pre-diagnosis section of the forum that fits some of these categories, but it doesn't fit them all.  It seems to me the best place for people to get information on eating gluten-free effectively is right here on this forum.  Opening it up to non-celiacs and making it more welcome to people without an official doctor's blessing seems like it would make it easier for them to find information.  Many people these days want to try eating gluten-free for a while to see if they feel better.  While the forum is geared towards supporting celiacs, it seems like it could be used to help support other people also.  Some have a clear medical condition that is benefited by eating gluten-free, others may have a less clear medical situation but want to try gluten-free as a test.


Many of us have experienced years of trying to get a medical diagnosis for our celiac disease, so we know it can be hard to get a real answer from the medical establishment.  Medicine seems to be advancing at a rapid pace, but it is not at the point where we know everything about the effects of gluten and wheat etc on the human body.


What I suggest would be nice, is to have a section of the forum for people who want to try eating gluten-free to see if they feel better, for whatever reason.  There doesn't seem to be a better informed group of people on eating gluten-free than right here on this forum.  So many people could benefit from asking questions here and not feeling like they aren't accepted just because they aren't celiacs IMHO.  I think this forum is pretty accepting of non-celicas, including those with NCGI, but an actual section set aside for non-celiacs might be good to set up.  Hopefully it could be made clear that people posting in that section are not celiacs and are not asking for celiac advice so much as gluten-free eating advice.  There is plenty of confusion in the public about eating gluten-free, and there is plenty of knowledge here to share.


There are some obvious issues that could arise.  Like celiac members getting irritated about non-celiacs taking the gluten-free diet less seriously than them.  And people with Crohn's or diabetes not understanding the strict avoidance of gluten that celiacs have to do.  And people giving advice will have to remember that it is non-celiacs they are talking to and trying to help.


It seems to me that there is a concentration of knowledgte on this forum about eating gluten-free, and many people wanting to learn the same.  But they may not feel welcome because the forum is so geared to celiacs and NCGI only.  Or it may appear that way to an outsider at least.


So, what do the other peeps think?  How about the Scott-head who is the admin and chief honcho?  Personally, I think eating gluten-free and whole foods is good for many people, even non-celiacs.  Can we share the hard learned rules and help some other peeps?


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#910636 Possible Celiac?

Posted by GFinDC on 27 March 2014 - 08:24 PM

Hi Fenrir,


The link below will take you to a series of articles about the liver and celiac disease.  Some light reading for your weekend entertainment.  My understanding is that liver enzymes are often elevated in untreated celiac disease due to cell death releasing toxins into the blood stream.  I am thinking they call that cell apoptosis or some such like word.  The antibodies attack and destroy the vili lining ithe small intestine (made up of cells) and that causes the toxins.  So, if that is the problem, going gluten-free should resolve it after a while.  The antibodies decline after going gluten-free and the cell damage reduces or stops.  So then the liver can recover.




Meanwhile on a somewhat sad note, while the gluten-free diet can help a lot of things I'm afraid your nose may be beyond hope even for gluten-free  eating to fix.  But it's ok, we like you just fine as you are. :)

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#908664 Results

Posted by GFinDC on 11 March 2014 - 08:20 PM



It's fine to go gluten-free without positive test results.  There are no tests for non-celiac gluten intolerance (NCGI) yet, so the  only way to know is to trial the gluten-free diet.  And there are probably a lot more people with NCGI than with celiac disease.  Do stick with the gluten-free diet for at least 6 months and record your results.  A food / symptoms diary can help you pinpoint food reactions.

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#907370 Misdiagnosed With Celiac?

Posted by GFinDC 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 GFinDC 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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