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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Gluten Intolerant vs Celiac
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19 posts in this topic

My daughter is currently on the elimination diet.  I REALLY want to tease out if she is gluten intolerant or celiac because I don't WANT to throw out all the cutting boards and toaster and knives if she isn't celiac...but I also don't want to keep USING them if she is just gluten intolerant.

She is 2 weeks gluten-free and 7 days in knowingly ate a small amt of gluten and it flattened her for 2 full days.  The third day was also rough and then boom she was AMAZING again. Alert engaged etc.  The difference was drastic even though we hadn't seen a sign improvement in those 7 days.  That little bit of gluten was severe.  And it gave us an idea of what to look for in her.  Today we went to Wendy's and I prechecked on the website that the items she wanted were gluten-free.  A baked Potato, frosty and a piece of grilled chicken.  They all were but the chicken is often cut on the same cutting board as breaded items so it had a warning.   We went in and the manager was AMAZING and handled the item herself.  I was so focused on the chicken that when my daughter changed her order to fries at the last second I didn't bat an eye.  Tonight she crashed like she had been "glutened".  Just like the time last week.  I wondered if the chicken had somehow been contaminated and my son said "Maybe it is the fries".  I almost died!!  The fries!!!  I never looked!  So I went on line and looked and sure enough they are NOT gluten free!!  I felt awful!   Given that - do you think it is likely that she is celiac and I should hold a yard sale for all my contaminated stuff?? 

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Posted (edited)

I think you should get an actual medical test to see if your child has Celiac before you diagnose her.  Celiac is a real disease and should be treated as such.

 

and what if you guess wrong?  You decide she is just gluten intolerant so you don't worry about trace amounts of gluten, like fries in a  shared fryer.  I don't know her age, but  untreated Celiac in growing  children,  can cause a lot of issues - growth problems, bone density issues, bad teeth and gums, fertility issues when she is older,....the list goes on.

Edited by kareng
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2 hours ago, Mermaid's Mom said:

My daughter is currently on the elimination diet.  I REALLY want to tease out if she is gluten intolerant or celiac because I don't WANT to throw out all the cutting boards and toaster and knives if she isn't celiac...but I also don't want to keep USING them if she is just gluten intolerant.

She is 2 weeks gluten-free and 7 days in knowingly ate a small amt of gluten and it flattened her for 2 full days.  The third day was also rough and then boom she was AMAZING again. Alert engaged etc.  The difference was drastic even though we hadn't seen a sign improvement in those 7 days.  That little bit of gluten was severe.  And it gave us an idea of what to look for in her.  Today we went to Wendy's and I prechecked on the website that the items she wanted were gluten-free.  A baked Potato, frosty and a piece of grilled chicken.  They all were but the chicken is often cut on the same cutting board as breaded items so it had a warning.   We went in and the manager was AMAZING and handled the item herself.  I was so focused on the chicken that when my daughter changed her order to fries at the last second I didn't bat an eye.  Tonight she crashed like she had been "glutened".  Just like the time last week.  I wondered if the chicken had somehow been contaminated and my son said "Maybe it is the fries".  I almost died!!  The fries!!!  I never looked!  So I went on line and looked and sure enough they are NOT gluten free!!  I felt awful!   Given that - do you think it is likely that she is celiac and I should hold a yard sale for all my contaminated stuff?? 

If you REALLY  wanted to find out if she has celiac disease, you would have jumped at the chance when you were offered to have her tested  for around $90 (see previous thread).   I understand that you want to resolve her many issues, but besides a celiac blood panel and/or an endoscopy, there is no way for sure to determine if she has celiac disease.  It can not be based on symptoms alone because some folks never have symptoms!  

I could have sworn that my 19 year old niece had celiac disease.  But she does not (she failed every single celiac test).   Instead,  She was diagnosed with Crohn's.  She went through four GI's.   I am sure a gluten-free diet might have helped her a bit, but her Crohn's would have gone untreated.  

Again, I understand that you are desperate.  But can you base a decision on a few internet searches?  

Living with celiac disease is hard.  You thought your daughter completely bought into the gluten-free diet, but she went and ordered fries without knowing that they were gluten free or not.  You ordered grilled chicken that had been cut on a board used for breaded chicken too.  A huge risk.   See?  This diet is hard, hard, hard.   

How can you ask strangers on the internet to diagnose your daughter (we can not)?

It is your choice and she is your kid, but since she has been glutened a few times and she has only been gluten free for a two weeks, I suggest re-thinking a gluten challenge and get her tested.  Have that yard sale.  Since you are in the fence about parting with your cutting board and toaster, ask family and friends to contribute their junk.  You will be able to off-set the cost of the celiac test.  

Karen's advice is excellent.  Listen to her.  She has attended several celiac conferences.  She is dedicated to helping others with celiac disease.     I get that some people have no choice but to diagnose themselves.  But most of those are adults.  I am sorry too that you are not working with a celiac-savvy doctor.  Very sorry.  

I hope that your daughter's health improves.   

 

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I appreciate the importance of testing.  I respect the fact that you all value that science.  I am normally a person who values the same thing.

Here is what you don't know :

Something is poisoning my daughter.  It has slowly been stealing her from me.  It has now reached a critical point where we have been to a Neurologist to test for Cerebral Palsy etc.  But it is none of those things.  Neurologically speaking she has nothing "wrong".  But some days she has no idea of what day of the week it is.  Even though she asks all day.  Some days she can't get to school from the fatigue.  Some days she can't understand a simple question like "do you want roasted potatoes or mashed?"  Literally needs that broken down for her.   When she is not in the fog she is whip-smart.  Will discuss how odd it is that the Mona Lisa is an Italian painting but in a French museum - who knew?

Over the summer she and I went to 43 medical appointments.  No one suggested celiac or gluten intolerance.  I always felt that she was gluten intolerant (but that it only played a minor role in her issues).  After ALL the tests came back this Summer I was defeated.  I realized that we had to just accept that this is how it is.  By that point her issues were so bad that she was legally given the status of disabled.  She is considered having an invisible disability.  She gets money every month from the government.  School has modified her education so that she can keep up.  Fine.  I accept it.

Except a few months later...I don't accept it. I see that she goes in and out of this confusion.  That she is being pulled in and out of this state but SOMETHING.  And I want to find out what happens before we lose her.  I decide to go down the Gluten free path again and almost fall over when I read the symptoms of celiac.  Then Gluten Ataxia.  I swear she is being poisoned by Gluten.  I would have tested her that day (bloodwork) but to the advice of my trusted physician who said "90% come back neg and even if it does I am going to give you the same medical advice as if it came back positive".  I am not putting my daughter through an endoscopy (that is a whole nother bag of issues that I am not getting into) and I cannot stomach the thought of feeding her Gluten for 12 more weeks when I see the damage it is doing.  After 14 days gluten-free I seriously doubt my daughter would agree to it either.  She is at the point now that she is reading the labels of her toothpaste.

If my refusal to "test" my daughter is an issue that will forever cloud any questions that I ask on here please let me know now as I will go somewhere else with my questions.

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Hi MM,

I think you are assuming gluten intolerant is ok and there isn't any need to be careful with gluten if it is NCGS.  We don't really know if that is true.  Certainly people with NCGS can have symptoms from exposure to gluten. We don't know much about NCGS yet, so we don't know if there are any long term consequences to a person with NCGS eating gluten.  Some people with celiac disease get the NCGS label because they fail the celiac testing for some reason.  Celiac disease testing isn't perfect.  NCGS testing is non-existent.

You are really new to the whole idea of the gluten-free diet at this point.  It took me about 6 months to get half straight on it.  It is real easy to make mistakes at the beginning of the gluten-free diet.  That's why a whole foods diet is suggested, which makes things simple.  Restaurants, especially fast food joints, are not a good choice regardless of their gluten-free claims.   I would not suggest eating at any restaurants for 6 months.  And then only eating at restaurants that are verified by other celiacs as being safe.   You can often find reviews of restaurants on this forum.  There are also some apps like FindMeGF that can help.  There is a restaurant gluten-free certification program also.

http://www.gfco.org/

I can't say I use the GIG certification really, but I don't eat out much either.  It is better to take food with you than go to a restaurant in the diet beginning.  Snacks like fruit, nuts, and boiled eggs are easy to carry.  It seems gluten is hiding everywhere in the American food industry.  Gluten is added to many processed foods that it might not seem like would have it.  Barley malt is often used as a flavoring for instance.  And wheat flour is used to thicken things.  It's a minefield!

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Posted (edited)

23 minutes ago, Mermaid's Mom said:

I appreciate the importance of testing.  I respect the fact that you all value that science.  I am normally a person who values the same thing.

Here is what you don't know :

Something is poisoning my daughter.  It has slowly been stealing her from me.  It has now reached a critical point where we have been to a Neurologist to test for Cerebral Palsy etc.  But it is none of those things.  Neurologically speaking she has nothing "wrong".  But some days she has no idea of what day of the week it is.  Even though she asks all day.  Some days she can't get to school from the fatigue.  Some days she can't understand a simple question like "do you want roasted potatoes or mashed?"  Literally needs that broken down for her.   When she is not in the fog she is whip-smart.  Will discuss how odd it is that the Mona Lisa is an Italian painting but in a French museum - who knew?

Over the summer she and I went to 43 medical appointments.  No one suggested celiac or gluten intolerance.  I always felt that she was gluten intolerant (but that it only played a minor role in her issues).  After ALL the tests came back this Summer I was defeated.  I realized that we had to just accept that this is how it is.  By that point her issues were so bad that she was legally given the status of disabled.  She is considered having an invisible disability.  She gets money every month from the government.  School has modified her education so that she can keep up.  Fine.  I accept it.

Except a few months later...I don't accept it. I see that she goes in and out of this confusion.  That she is being pulled in and out of this state but SOMETHING.  And I want to find out what happens before we lose her.  I decide to go down the Gluten free path again and almost fall over when I read the symptoms of celiac.  Then Gluten Ataxia.  I swear she is being poisoned by Gluten.  I would have tested her that day (bloodwork) but to the advice of my trusted physician who said "90% come back neg and even if it does I am going to give you the same medical advice as if it came back positive".  I am not putting my daughter through an endoscopy (that is a whole nother bag of issues that I am not getting into) and I cannot stomach the thought of feeding her Gluten for 12 more weeks when I see the damage it is doing.  After 14 days gluten-free I seriously doubt my daughter would agree to it either.  She is at the point now that she is reading the labels of her toothpaste.

If my refusal to "test" my daughter is an issue that will forever cloud any questions that I ask on here please let me know now as I will go somewhere else with my questions.

Hi again MM,

Looks like we cross-posted.  Please don't be offended by the interest in getting people to be tested.  So many times people come on the forum and miss the opportunity for testing because they started the gluten-free diet thinking it wouldn't matter to the testing, but it does,  Then if they decide to get tested later it is very unpleasant for them to do a gluten challenge.  So we try to encourage people to be tested first.

But in the case of your daughter, or anyone with brain/neuro issues from gluten, I agree.  Testing is not the most important thing, preventing more damage is more important.  I did not have the full diagnosis myself.  I had been gluten-free for 4 months before I saw the doctor for celiac testing, so it was too late then.  And the way it affected me, I was not willing to do the gluten challenge either.

I hope your daughter feels better soon.  I really think she probably has gluten ataxia and celiac disease.  You should know that the immune antibodies don't stop after the gluten food has left the gi system.  The antibodies can stay active for weeks or months in some cases.  So it's real important to avoid any traces of gluten to keep the immune system reaction down.

We often suggest B-12 for new people as it is one of the vitamins that affects nerve healing and B-12 is often low in untreated celiacs.

What common nutrient deficiencies might an adult experience prior to diagnosis?

Iron, calcium, and Vitamin D are the most common deficiencies, but some present with deficiencies in B12, copper, folate, magnesium, niacin, riboflavin, and/or zinc. Nutrient deficiencies associated with celiac disease are due to intestinal damage caused by protein in wheat, rye, and barley. In most cases, nutrient deficiencies that were caused by damage from celiac disease will naturally resolve as your intestine heals. Many gluten-free dieters choose foods that aren’t fortified with vitamins and minerals like their gluten-containing counterparts. Thus, we suggest a general multivitamin to prevent against nutritional deficiencies. August, 2015

A
 
Edited by GFinDC
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10 minutes ago, GFinDC said:

Hi again MM,

Looks like we cross-posted.  Please don't be offended by the interest in getting people to be tested.  So many times people come on the forum and miss the opportunity for testing because they started the gluten-free diet thinking it wouldn't matter to the testing, but it does,  Then if they decide to get tested alter it is very unpleasant for them to do a gluten challenge.  So we try to encourage people to be tested first.

But in the case of your daughter, or anyone with brain/neuro issues from gluten, I agree.  Testing is not the most important thing, preventing more damage is more important.  I did not have the full diagnosis myself.  I had been gluten-free for 4 months before I saw the doctor for celiac testing, so it was too late then.  And the way it affected me, I was not willing to do the gluten challenge either.

I hope your daughter feels better soon.  I really think she probably has gluten ataxia and celiac disease.  You should know that the immune antibodies don't stop after the gluten food has left the gi system.  The antibodies can stay active for weeks or months in some cases.  So it's real important to avoid any traces of gluten to keep the immune system reaction down.

We often suggest B-12 for new people as it is one of the vitamins that affects nerve healing and B-12 is often low in untreated celiacs.

What common nutrient deficiencies might an adult experience prior to diagnosis?

Iron, calcium, and Vitamin D are the most common deficiencies, but some present with deficiencies in B12, copper, folate, magnesium, niacin, riboflavin, and/or zinc. Nutrient deficiencies associated with celiac disease are due to intestinal damage caused by protein in wheat, rye, and barley. In most cases, nutrient deficiencies that were caused by damage from celiac disease will naturally resolve as your intestine heals. Many gluten-free dieters choose foods that aren’t fortified with vitamins and minerals like their gluten-containing counterparts. Thus, we suggest a general multivitamin to prevent against nutritional deficiencies. August, 2015

A
 

GFinDC - THANK YOU!   I am not trying to be disagreeable.  I am not trying to ruffle feathers or come across as "knowing better".  I am just trying to do the best for my baby.  She does have Sensory Processing disorder.  She is orally defensive.  Unless you have lived in those shoes you have no idea of what the limitations are.  She can barely tolerate the dentist after one bad experience.  If I outlined to you the process (and months) it took of getting to the point that she trusted the dentist to clean her teeth you would not suggest the endoscopy.  She could be 6 months of needing to eat gluten as we baby stepped our way to success. 

Oh and she has been b12 and iron deficient for months and we go weekly for injections!  Thanks!  She is also now on a probiotic and omega 3 but a good magnesium is my next purchase.  Going to look for one today!

Oh And I use "you" in the general sense not directed at YOU :)

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Posted (edited)

But she has only been sort of gluten-free for 2 weeks?  Why not run and get her tested today?  Just the blood test.  They are very accurate for Celiac disease, despite what that doctor said.   If its positive - you might get more support from doctors.  If its negative - you know something there,too.  I do understand trying to find out what is wrong.  Part of medicine is testing and eliminating possibilities to narrow it down.  

It sounds like there might be much more than Celiac or gluten intolerance going on.  Sound like she must be getting some psychological/behavioral/occupational therapy, too?  Maybe they can give you some suggestions.  I hope you keep fighting for some proper medical help for your child.

 

I see this often - people self-diagnosing with Celiac/gluten intolerance. Often its harmless to be mostly gluten free.  But sometimes it just keeps them from addressing the real issues.  I don't want to see that happen to your child.

 

 

Edited by kareng
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I have been using  liquid health vitamins, and Doctor best. Both brand present forms of b-vitamins and magnesium that can be mixed in juice. I take a lot of pills as is and being about to drink something is much easier for me. Might be nice think to look into for your daughter, to make it easier on her.   I also think I linked a alternate food page, I think a lot of them can be bought in canada also. As for fries making your own can be a fun adventure, and quite easy and you can use different gluten-free seasonings, or blend your own like I do. 

I know it might be hard but we highly suggest not eating out for a few months during the initial healing phase. I know she had odd and particular diet with how things need to be consistent on her palate. I might suggest rice dishes, rice gruel. Sorta was one of my stables when I started the gluten-free diet years ago. Sorta miss it now days lol. So many combinations from savory cooked in a broth with powdered seasonings, to sweet with blended fruit, jams, and nut butters in it.

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1 hour ago, kareng said:

But she has only been sort of gluten-free for 2 weeks?  Why not run and get her tested today?  Just the blood test.  They are very accurate for Celiac disease, despite what that doctor said.   If its positive - you might get more support from doctors.  If its negative - you know something there,too.  I do understand trying to find out what is wrong.  Part of medicine is testing and eliminating possibilities to narrow it down.  

It sounds like there might be much more than Celiac or gluten intolerance going on.  Sound like she must be getting some psychological/behavioral/occupational therapy, too?  Maybe they can give you some suggestions.  I hope you keep fighting for some proper medical help for your child.

 

I see this often - people self-diagnosing with Celiac/gluten intolerance. Often its harmless to be mostly gluten free.  But sometimes it just keeps them from addressing the real issues.  I don't want to see that happen to your child.

 

 

Our Dr is very supportive.  In fact she said I will be recommending you go down this path for your daughter even if the results come back negative.  So let's just do it anyway!   There is more than Celiac going on.  We are aware of that.  I apologize if I don't give you the entire medical history but I assure you she has been seeing a Psychologist off and on as needed since 6 years old and has been seeing an OT weekly for two years. 

I don't want to come across as across as flippant to your advice and suggestions but I need to assure you that she is in good hands.  I am not self- diagnosing her.  I am not taking everything at face value.  It is an onion we have spent the past 3 years peeling away the layers. We have a LOT of answers - I personally know what is mostly going medically in regards to her issues. 

But the chronic fatigue, brain fog and digestive issues cannot be explained by all that we have already uncovered.

I assure you I am not "green" in this area - gluten free is a new arena but I have dissected a human brain before and am well educated.  I assure you she is not falling through the cracks nor are we being flippant about her issues.

I am genuinely not sure why this blood work is your hill to die on?

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1 hour ago, Ennis_TX said:

I have been using  liquid health vitamins, and Doctor best. Both brand present forms of b-vitamins and magnesium that can be mixed in juice. I take a lot of pills as is and being about to drink something is much easier for me. Might be nice think to look into for your daughter, to make it easier on her.   I also think I linked a alternate food page, I think a lot of them can be bought in canada also. As for fries making your own can be a fun adventure, and quite easy and you can use different gluten-free seasonings, or blend your own like I do. 

I know it might be hard but we highly suggest not eating out for a few months during the initial healing phase. I know she had odd and particular diet with how things need to be consistent on her palate. I might suggest rice dishes, rice gruel. Sorta was one of my stables when I started the gluten-free diet years ago. Sorta miss it now days lol. So many combinations from savory cooked in a broth with powdered seasonings, to sweet with blended fruit, jams, and nut butters in it.

Thanks for those suggestions!  I will look for those brands.   We are already "homemade" fry snobs! LOL!  I mostly cook everything from scratch - my kids turn up their noses at store bought cookies, cakes etc.   We actually had a cousin here and that mom gave money for me to treat the kids to Wendy's (her sons fave spot) and I mistakenly thought I could be smart about letting her eat there also but realize now that is not possible.  So does she now! LOL  And skipping take out will not be a hardship for her. 

Rice is tricky for her because her mouth doesn't like all the pieces.  That it can go all over.  I am going to implement some of our therapy tricks to eventually make rice more mouth friendly but for now it gets a big thumbs down.

So much to learn still!  Thanks for your help!

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7 minutes ago, Mermaid's Mom said:

Our Dr is very supportive.  In fact she said I will be recommending you go down this path for your daughter even if the results come back negative.  So let's just do it anyway!   There is more than Celiac going on.  We are aware of that.  I apologize if I don't give you the entire medical history but I assure you she has been seeing a Psychologist off and on as needed since 6 years old and has been seeing an OT weekly for two years. 

I don't want to come across as across as flippant to your advice and suggestions but I need to assure you that she is in good hands.  I am not self- diagnosing her.  I am not taking everything at face value.  It is an onion we have spent the past 3 years peeling away the layers. We have a LOT of answers - I personally know what is mostly going medically in regards to her issues. 

But the chronic fatigue, brain fog and digestive issues cannot be explained by all that we have already uncovered.

I assure you I am not "green" in this area - gluten free is a new arena but I have dissected a human brain before and am well educated.  I assure you she is not falling through the cracks nor are we being flippant about her issues.

I am genuinely not sure why this blood work is your hill to die on?

I think I explained.  Celiac is actually a disease.  Knowing she actually has or does not have a disease is a piece of the medical puzzle.   I am not here to argue with you, just telling you my opinion. Obviously, with info I had from the first post - it sounded a bit "flippant".  I hope being gluten-free helps her, whatever the reason.  

 

p.s. - I have dissected brains, too.  Hate that feeling when you cut into the skull... Much prefer hearts.  lol :D

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1 hour ago, kareng said:

I think I explained.  Celiac is actually a disease.  Knowing she actually has or does not have a disease is a piece of the medical puzzle.   I am not here to argue with you, just telling you my opinion. Obviously, with info I had from the first post - it sounded a bit "flippant".  I hope being gluten-free helps her, whatever the reason.  

 

p.s. - I have dissected brains, too.  Hate that feeling when you cut into the skull... Much prefer hearts.  lol :D

Thank you.  I appreciate your perspective.

Based on what I understand about the tests false negatives and the knowledge that we can't proceed with an endoscopy at this time I am going to proceed as if she is Celiac.   Our Dr has been with us since the beginning.  Knows all her issues and limitations and truly feels an elimination diet is our best diagnostic tool right now.  When my daughter is an adult she can choose if she wants to eat Gluten and do all the proper testing herself. 

I really hope this decision doesn't make me a pariah on this board but I understand when others are passionate about something.

I really do appreciate everyone sharing their knowledge with me and I hope they continue to do so.

And thank you for your well wishes for my daughter I can hear the sincerity in your words.  :)

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8 minutes ago, Mermaid's Mom said:

I am genuinely not sure why this blood work is your hill to die on?

Because it offers the possibility of answers, rather than uncertainty. 

You want relief for her now and who couldn't understand that, but the diagnosis is as much for her when she's 20, 30, 40 or older. At this moment your daughter still has the option of a methodical, scientific, confirmation or exclusion of celiac disease. Once she progresses on the gluten free diet that becomes harder and harder to achieve. It involves a gluten challenge that can be very difficult going. 

Because she has a long life ahead, that diagnosis could prove incredibly valuable to you initially and to her and maybe even her own children in the years to come. Not merely for ensuring that schools, colleges, workplaces, hospitals etc take the dietary requirements seriously, but as a source of support and when your not around to keep her on the diet. It's what she'll fall back on when her friends are offering her a slice of pizza and she's tempted.

The people answering you in this thread understand more than anyone that a lifetime commitment of avoiding gluten is not a small thing and therefore if at all possible it should be taken on the best evidence available. In this case a full celiac blood panel and, if the physician calls for it, endoscopy.

That said, the decision is for you to take in conjunction with your physician and please don't mistake the advice given for any lack of empathy for your daughter or yourself. :)

 On this point:

12 hours ago, Mermaid's Mom said:

I REALLY want to tease out if she is gluten intolerant or celiac because I don't WANT to throw out all the cutting boards and toaster and knives if she isn't celiac...but I also don't want to keep USING them if she is just gluten intolerant.

I tested negative for celiac and so I would be classed as non celiac gluten sensitive (experts prefer the term sensitivity rather than intolerance). I may not have the markers in my blood or detectable intestinal damage but even tiny amounts of gluten have a profound affect on me, primarily neurological, including ataxia, brain fog, optic neuritis, depression, anxiety, irritability, optic neuritis and then on to other fun stuff like severe chest pains, stomach cramps, skin rashes, back pain etc. etc. I cannot begin to express just the impact this has had on my life. 

Research is still ongoing but it appears that NCGI sufferers are more likely than celiac patients to report primarily neurological symptoms. So if this is what your daughter has I would encourage you to move away from the impression that whilst celiac must be treated seriously, NCGI is something you can be more relaxed about. It can be very serious indeed and if I don't follow the gluten free diet strictly I can be in for weeks or months of suffering the consequences. Essentially I live my life as if the celiac diagnosis was positive. 

So if you eschew further testing, I'd suggest that's the assumption you have to make in your daughter's case. At least until a strict elimination diet has been followed for long enough to establish any impact on her symptoms. 

Best of luck to you both :)

 

 

 

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Mermaid's Mom,

You are NOT a pariah.  If any one is on this board is.  Let me be the Pariah.

You are overwhelmed and rightly so.

We have the benefit of having had this disease for many years and all the information (can feel like judgement) I think to a new comer but I know every on this board would help you if they could.

That said I have pre-typed some of my next thought so as to organize them but I forewarn they will be long because I am trying to educate and have a lot of information to cover so here goes nothing.

I wrote this earlier today.   I will let you know when I go back to citing other things as I type my response.  I genuinely hope this is helpful.

Mermaids Mom,

As I was reading your thread about whether it is Non Celiac Gluten Sensitivity or Celiac disease I couldn’t but be helped be moved.

I wrote this piece of prose (as I sometimes do when I am inspired)

We Can’t See the Forest or the Trees

If tree’s (symptoms) are diseases in the forest of health we can spend so much time in identifying our tree/disease we forget we are in a forest.

There is abundant life in the forest.

The forest is healthy the trees are only symptoms.

When we see the tree’s we so no way out.

When we see are in a forest – we get healthy and find our way out.

Or else we go around in circles.

What if each tree was different nutrient in this forest of health/nutrition – a sign of which way to turn.

If/but they (nutrients) all function together to provide shade and recovery (fruit) from each individual tree – for high quality health.

When we step back from inspecting each tree we see how the forest functions.

It is then we find our way out.

Step back and consider that nutrition is the key to a healthy forest/life and your life will flourish when each tree takes its rightful place in the forest.

Some in the understory (trace minerals) some in the canopy (cornerstone nutrients (Magnesium) like the large oaks.

Together they make up the forest of life.

Life is a web of life.

Where do we fit in that web sometimes is hard to know.

But health is alimentary (of or pertaining to the Gut/GI) axis.

When your 2nd brain –your GI system is not healthy your first brain will never function properly.

Your tree (disease) is never properly identified because they don’t see the forest for the trees.

And each tree looks the same – because when you are lost – they all look the same!

Pellagra looks the same as Celiac disease and one is confused for the other in the Majority of CASES!

This article/link on Celiac.com talks about why this is. https://www.celiac.com/articles/24658/1/A-Differential-Diagnosis-How-Pellagra-Can-be-Confused-with-Celiac-Disease/Page1.html

May God bless your journey it is not a long way – if you know the way.

To quote Robert Frost in his poem “TheRoad not Taken”

I shall be telling this with a sigh

Somewhere ages and ages hence:

Two roads diverged in a wood, and I—

I took the one less traveled by,

 

And that has made all the difference.

I encourage you to walk down the Pellagra path to see if it leads you to a healthy end.

It could make all the difference. I know it did for me.

Read this article on the Hindawi that attributes many of the effects of aging on/to undiagnosed or sub-clinical Pellagra. https://www.hindawi.com/journals/cggr/2012/302875/

What a novel concept. That poor nutrition can present their selves as disease in old age (or any age really) see below about babies can inherit vitamin deficiencies from their own mothers.

And it not only old age where/when Pellagra can show up either. They say even when quoting “Foetal implants develop PD pathology, illustrating the point that the niche microenvironment is the key [357–363]. Stem cell implants in PD and other conditions survive and connect but form strange lesions and connections suggesting that lack of stem cells is not the real deficit.”

PD is short for Parkinson Disease

Amazing science information if you ask me that is completely ignored as far as I can tell that Pellagra (a Niacin deficiency) in even children can and does affects’ babies mental conditions.

How do we know this is true? We don’t know unless we test or take the Vitamin.

Even more amazing to me science confirms this in new research about Eczema in babies linking low B-Vitamin levels in the mother to Eczema in babies. See this link http://www.nutraingredients.com/Research/Mother-s-vitamin-B-levels-affect-eczema-risk-study-finds

Read and reread the Hindawi article you will not find a better source on the “Lesson’s from Pellagra” that we still need to relearn today.

Please read my blog on celiac.com where I discuss how this what I call a “Silent Epidemic” is often confused for Celiac disease today linked here for your convenience or visit the website in my profile if any of these interest you enough to research it (Pellagra) in greater detail than the links I have provided. https://www.celiac.com/gluten-free/blogs/entry/2103-why-and-how-pellagra-is-often-confused-with-celiac-disease-andor-other-gidigestive-problems-the-science-of-pellagra-a-hidden-epidemic-in-the-21st-century-presentingrevealing-as-ncgs-andor-possbily-celiac-disease/

where I note “common symptoms of Pellagra in Celiac’s occur 58% of the time” as reported in the International Journal of Celiac disease. Link provided here http://pubs.sciepub.com/ijcd/3/1/6/

The gluten free works blog post about this topic of a Vitamin B3 deficiency in Celiac’s linked below is a also a good summary of this topic. https://glutenfreeworks.com/blog/2010/06/23/niacin-vitamin-b3-deficiency-in-celiac-disease/

I hope this is helpful.

2 Timothy 2:7 Consider what I say; and the Lord give thee understanding in all things.

Posterboy by the Grace of God,

Mermaid's mom it is me again.

I do think karerng is right that if you go very soon her antibodies will still be elevated (not biopsy) but a blood test.

The biggest drop in antibodies are usually in the first  6 weeks gluten free.

Here is article that recently talked about this issue.

https://www.celiac.com/articles/24693/1/Full-Gut-Recovery-from-Celiac-Disease-Can-Take-Up-to-Two-Years/Page1.html

While full recovery can take a full two years most celiac's bowels get better after 6 months.

People have borderline tests for a celiac diagnosis all the time in the absence of a biopsy.

By borderline I mean not definitive to the doctor's conclusion but as jmg said could never "pass" for a biopsy.

And why the doctor said probably he would treat you the same either way is depressing for people searching for "definitve hill" to die on.

Sometimes it is not always black and why.  There is more grey in test's than we would like to admit sometimes.

I wrote a thread post about why I think this is. see this link to the post

I think it is unfortunate for us that biopsy are still required for "defintive" celiac diagnosis instead of getting the considered less diagnosis of NCGS as jmg pointed out is not lesser in suffering.

The suffering is real.  We all get that.

Dr. Rodney Ford wrote a great post about this topic about why he prefers blood serology to the exclusion of a "biopsy" proven diagnosis.

See his article here at this link http://drrodneyford.com/extra/documents/236-no-gold-standard.html

he concludes his article on the topic saying he sees an

Ending of endoscopy

"In the next few years, blood tests (particularly the DGP tests) will take over the endoscopy and  we will see the end of the endoscopy to diagnose celiac disease."

I find that many procedures are done out of necessity to eliminate other diseases as karerg alluded too.

12 hours ago, kareng said:

 Part of medicine is testing and eliminating possibilities to narrow it down.  

AS to whether your daughter is old enough to test positive for Celiac disease is another tricky question because often tests in children test negative once or twice ie. have NCGS before before later finding out later in life that they now have "full blown" celiac instead sadly.

Dr. Rodney Ford has a great thread on this topic as well.  I think it would help you to read it.

http://drrodneyford.com/extra/documents/239-how-early-can-you-diagnose-celiac-disease.html

Dr. Ford believes in early intervention and believes a postive blood test in the absensce of a "biopsy" proved diagnosis is acceptable in children and he recommends this to his patients.  He does not consider it be a false negative.

I like to thank of this way.  Positive is positive.  Either by the blood or biopsy.  Positive is positive but be sure to get your daughter's blood test soon or the antibodies will be too low for even a false positive (as the doctor's might term it or is it a false negative) but the key here it is positive and that is enough for Dr. Ford.

Dr. Hyman covered this well on the HuffPost and his own website over 5+ years ago and still many doctor's don't understand this fact that positive is positive.

http://drhyman.com/blog/2011/03/17/gluten-what-you-dont-know-might-kill-you/

Quoting

"Many doctors consider elevated anti-gliadin antibodies in the absence of a positive intestinal biopsy showing damage to be “false positives.” That means the test looks positive but really isn’t significant.

We can no longer say that. Positive is positive and, as with all illness, there is a continuum of disease, from mild gluten sensitivity to full-blown celiac disease."

I am one of the fortunate ones who had a doctor who realized my blood test was not a false positive and on follow up of my blood antibodies 6 weeks later the subsequent drop in my "off the chart" antibodies dropping to a normal level was more than enough proof for my doctor. 

An obvious cause and affect.

And why you are there having check your daughter B-Complex levels to see if she is also low in Niacin with could also explain many of her symptom's (see above) it is just not diagnosed much today because doctor's don't know to look for it anymore these days.

I hope this is helpful.

You are are right on target with the Magnesium as a Glycinate or Citrate.  Take some for yourself too!  You can't make energy with out it. 3/day i.e with each meal if possible will work wonders for your and her energy levels.

2 Timothy 2:7 Consider what I say; and the Lord give thee understanding in all things.

Posterboy by the Grace of God,

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Thank you Posterboy!  There is lots to process but I want  to thank you for taking the time to share all that information!  Much appreciated!

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Dear Mermaid's Mom,

You're getting a lot of great advice, and, here's even more food for thought!

My husband is "gluten-sensitive", but is not a "Celiac", and from what Dr. Kenneth Fine, M.D. has discovered over the many years, LOTS of people are "non-Celiac", but are still "gluten-sensitive" (formerly called "intolerant to gluten", AND:

Your daughter may be one of these folks.

The GOOD news, is that small intestinal biopsy is NOT NEEDED, because BOTH Celiac Disease patients and NON-Celiac Disease patients who are "sensitive" to gluten, can suffer severe symptoms---so you don't have to subject your daughter to this. Why isn't small intestinal biopsy needed in your daughter's case? Because:

The "CURE" for ALL types of gluten-sensitivity, is the same: Do your best to have her AVOID EATING, DRINKING, TOUCHING, BREATHING any GLUTEN, PERIOD!

The easiest (maybe not the cheapest) way to deal with this possibility (non-Celiac gluten sensitivity) is to--yes, get rid of your old cutting boards, frying pan, toaster, cast iron cookware that has tiny pores in it that trap old gluten, etc., that may be contaminated with gluten, and buy NEW un-contaminated (not used) ones, and try your best to have your daughter avoid gluten, period, (religiously) for at least 3 months.

Also, many folks who are gluten-sensitive, ALSO are "sensitive" to one or more other proteins, such as MILK PROTEINS (whey, casein, etc. etc.). 

And, not everyone realizes, that in some people, "milk protein sensitivity" can cause THE SAME PHYSICAL DAMAGE TO "VILLI" AS CELIAC DISEASE CAN CAUSE, including flattening, blunting, or destruction of the small intestinal "villi"! (Does your daughter drink cow's milk? Does she eat CHEESES? Pizza? Does she eat butter? whey? casein?--check labels with magnifying glass)

So, I recommend that your daughter avoid all milk proteins, too, for at least the 3 months that she avoids gluten, to see if milk proteins might also be a problem in her case.

I learned from a very nice lady who works at EnteroLab (run by Dr. Kenneth Fine, M.D., gastroenterologist, who himself is "sensitive" to gluten, but who is not a Celiac Disease patient), that one can get the following blood test done, by one's own doctor, to see if one is or isn't "IgA deficient". 

This blood test is called "total secretory IgA", and if one "passes" this test, it means that one's immune system is working well enough to instruct one's large intestine to MAKE lots of "IgA" antibodies to (against) whatever proteins one is "sensitive" to.

If one "passes" the "total secretory IgA" test, then, Dr. Fine's "EnteroLab" STOOL SAMPLE TESTING, would be reliable, since his EnteroLab stool sample testing, looking for abnormally high levels of "IgA" antibodies to gluten, etc., RELIES on the ability of one's immune system to get excessively large numbers of IgA antibodies MADE by one's large intestine (where stool is also made).

If one "fails" the "total secretory IgA" test, then, Dr. Fine's stool sample testing could possibly show a "false negative" result, since the patient is "deficient" in the patient's immune system's ability to get the patient's large intestine (gut/colon) to produce/make IgA antibodies!

There are additional proteins that your daughter may be "sensitive" to. Even gluten-free CORN proteins can bother some people. Even gluten-free RICE proteins can be troublesome for some, although many gluten-sensitive folks do well with certified gluten-free organic brown rice food products. Even gluten-free buckwheat (not related to wheat) can be troublesome for some.

Consider the possibility of soy protein "sensitivity", etc.

And, remember that "kamut" for example, is actually an ancient form of wheat, and is full of gluten, and

avoid "bulk bins", where "scoopers" can "CROSS CONTAMINATE" gluten-free foods, with gluten.

Sincerely, Carol (retired RN/nurse)

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7 hours ago, concernedlady said:

Dear Mermaid's Mom,

You're getting a lot of great advice, and, here's even more food for thought!

My husband is "gluten-sensitive", but is not a "Celiac", and from what Dr. Kenneth Fine, M.D. has discovered over the many years, LOTS of people are "non-Celiac", but are still "gluten-sensitive" (formerly called "intolerant to gluten", AND:

Your daughter may be one of these folks.

The GOOD news, is that small intestinal biopsy is NOT NEEDED, because BOTH Celiac Disease patients and NON-Celiac Disease patients who are "sensitive" to gluten, can suffer severe symptoms---so you don't have to subject your daughter to this. Why isn't small intestinal biopsy needed in your daughter's case? Because:

The "CURE" for ALL types of gluten-sensitivity, is the same: Do your best to have her AVOID EATING, DRINKING, TOUCHING, BREATHING any GLUTEN, PERIOD!

The easiest (maybe not the cheapest) way to deal with this possibility (non-Celiac gluten sensitivity) is to--yes, get rid of your old cutting boards, frying pan, toaster, cast iron cookware that has tiny pores in it that trap old gluten, etc., that may be contaminated with gluten, and buy NEW un-contaminated (not used) ones, and try your best to have your daughter avoid gluten, period, (religiously) for at least 3 months.

Also, many folks who are gluten-sensitive, ALSO are "sensitive" to one or more other proteins, such as MILK PROTEINS (whey, casein, etc. etc.). 

And, not everyone realizes, that in some people, "milk protein sensitivity" can cause THE SAME PHYSICAL DAMAGE TO "VILLI" AS CELIAC DISEASE CAN CAUSE, including flattening, blunting, or destruction of the small intestinal "villi"! (Does your daughter drink cow's milk? Does she eat CHEESES? Pizza? Does she eat butter? whey? casein?--check labels with magnifying glass)

So, I recommend that your daughter avoid all milk proteins, too, for at least the 3 months that she avoids gluten, to see if milk proteins might also be a problem in her case.

I learned from a very nice lady who works at EnteroLab (run by Dr. Kenneth Fine, M.D., gastroenterologist, who himself is "sensitive" to gluten, but who is not a Celiac Disease patient), that one can get the following blood test done, by one's own doctor, to see if one is or isn't "IgA deficient". 

This blood test is called "total secretory IgA", and if one "passes" this test, it means that one's immune system is working well enough to instruct one's large intestine to MAKE lots of "IgA" antibodies to (against) whatever proteins one is "sensitive" to.

If one "passes" the "total secretory IgA" test, then, Dr. Fine's "EnteroLab" STOOL SAMPLE TESTING, would be reliable, since his EnteroLab stool sample testing, looking for abnormally high levels of "IgA" antibodies to gluten, etc., RELIES on the ability of one's immune system to get excessively large numbers of IgA antibodies MADE by one's large intestine (where stool is also made).

If one "fails" the "total secretory IgA" test, then, Dr. Fine's stool sample testing could possibly show a "false negative" result, since the patient is "deficient" in the patient's immune system's ability to get the patient's large intestine (gut/colon) to produce/make IgA antibodies!

There are additional proteins that your daughter may be "sensitive" to. Even gluten-free CORN proteins can bother some people. Even gluten-free RICE proteins can be troublesome for some, although many gluten-sensitive folks do well with certified gluten-free organic brown rice food products. Even gluten-free buckwheat (not related to wheat) can be troublesome for some.

Consider the possibility of soy protein "sensitivity", etc.

And, remember that "kamut" for example, is actually an ancient form of wheat, and is full of gluten, and

avoid "bulk bins", where "scoopers" can "CROSS CONTAMINATE" gluten-free foods, with gluten.

Sincerely, Carol (retired RN/nurse)

THANK YOU!  For taking the time to give me your thoughts!  I appreciate them all!

Ironically we just took her off dairy this weekend as I felt she was reacting to it.  I think when she dropped Gluten she inadvertently increased her dairy consumption (or maybe it just seemed that way?)  When she was "glutened" the one time it flattened her for 3 days.   Then I noticed that after a heavy dairy meal (baked potato with butter sour cream and cheese) that she would experience a much milder version of symptoms (so tired but not EXHAUSTED, no brain fog but distracted etc.) so we pulled dairy also.

When I was nursing her as a baby (her first 6 weeks) I wondered if she had a dairy aversion because she was upset after nursing and it coincided with me eating dairy prior to nursing.  It seemed to resolve itself and I never wondered again but it does make me wonder if dairy is a permanent issue?  I have found some amazing dairy replacements and she is still onboard so crossing fingers she stays motivated. 

The GREAT news is that she has ZERO brain fog since going gluten-free!!  It is bizarre and remarkable and amazing all at once.  My husband even sees it and he is always so inclined to be skeptical!

As a family we are ALL adjusting how we eat.  I am now 100% gluten-free along with her and my husband and son will now only eat Gluten outside the home.  We have thrown away all Gluten contaminated items and bought all new cutting boards, toaster etc.  I still do have some pans but cooked them to death and will not cook her food in them for MONTHS!

Interestingly enough I have suspected that I am gluten sensitive for a while now and decided to just try the elimination diet also.   Stomach pains after eating were normal for me and it also interfered with going to restaurants or over to peoples homes for dinner.  Lots of digestion issues over the past few year.  So I went gluten-free and from day one never had another stomach pain.  I wasn't being as diligent as my daughter...If the chocolate almonds say "may contain wheat" I still ate them.  Anyway on Fri night I went to a St Patricks day party and ate only the gluten-free stuff.  Some one raved about the mini meat pies and I took a few bites and then realized it was GLUTEN!  To be honest I wasn't really concerned and even though I threw it out I never thought about it again.

Sat at noon the pains began and I was in and out of the bathroom for 24 hours.  I was REALLY surprised.  I know it may be a coincidence but I doubt it.

All this to say that - I don't really care what the LABEL is I only want to know how to manage it for her!  So far I think we are on the right track!

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Dear Mermaid's Mom,

Good for you! I think you're doing everything right! :-)

Sincerely, Carol (Concerned Lady)

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    • Thanks for the reply. Yes I have been eating it everyday since they said it was a possibility but I hope its enough because I do prefer to eat fresh stuff. Like for example today I ate mainly gluten free stuff (as I normally do) but I had pasta to make sure I got something with gluten. Also do you know how long it takes for the biopsy to come back? Can they tell anything from the naked eye while doing the endoscopy? 
    • Welcome!  No one can say for sure that a positive celiac blood test is going to confirm celiac disease.  Some folks skip the endoscopy for various reasons (health, financial, long wait times in some countries, etc.), but help to confirm with a trial Gluten free diet.  The endoscopy remains the "gold standard" by most celiac experts.   Note that your test may be negative if you stopped eating gluten.  You must be eating it daily two to four weeks prior to the endoscopy.  If you stopped, you might need to postpone the procedure. Ask your GI to take four or more intestinal tissue samples.   Damage from celiac disease can be spotty.   Good luck!  Keep us posted.  We are here to help.  😊      
    • What are your goals and expectations in planning this trip?  What do you think the celiac experts are going to tell you?    You have celiac disease (biopsy confirmed with partial villi blunting).  I am assuming that you had elevated celiac antibodies.  You were diagnosed about three to four months ago and have glutened yourself a few times since going gluten free (totally common and normal!) What isn't your current GI doing that is making you unhappy?  I just want to remind you that it takes a lot of TIME to heal.  Time to learn the diet and not to gluten yourself.  Time to wrap your head around your diagnosis (grieve, etc.)  What most doctors fail to tell you is that it takes a year or longer to heal.  Really.  I kid you not.  Ask anyone around here who walks the celiac walk.  Sure, some researchers think that villi can grow back in just a few short weeks.  But they do not take into consideration the gluten free diet's steep learning curve.  You have glutened yourself and chances are you are going to get nailed again.  It happens to even the seasoned members.   Let's pretend  you have another issue.  Your doctors are first going to want to rule out that celiac disease as the cause of your current issues.  They can do this by testing your antibodies to insure they are in a downward pattern (could take a year or longer for them to get back into the normal lab range).  This test is often done three months after a diagnosis, but some doctors wait until the six month mark?  Why?  Perhaps they are aware that their patients tend to gluten themselves in the early months.  It might discourage patients to give up theGF  diet if they do not see radical improvement.   My GI follows celiac follow-up guidelines.   My PCP is clueless, but she runs the tests that I need when I see her.  Is it the very best support?  No, but I do not expect my doctors to hold my hand.  They have other patients who are much sicker than I ever was.   Please do not take offense.  I am just trying to figure out why you would want to go to a celiac center when you have already been formally diagnosed.  
    • Hello everyone! I am new to this so bare with me if I mess something up I've never posted on a forum. So on Friday I will be getting a biopsy done to confirm celiac disease. I'm wondering if I had a positive blood test what are the chances that the biopsy will come back positive showing blunted villi. I know its hard to say if you aren't a doctor but I'm curious. I guess I'm just looking for reassurance that I'll get a positive result. I know that sounds weird, like "wait you want celiac disease?" but I'm only 21 and I've been sick for so long and been to countless doctors and no one knows whats wrong with me. I finally think this can be the "thing" and maybe I can start to feel like a human instead of a zombie. Thanks for the input in advance! 
    • Wait.  Wait for the six months to pass before getting re-tested.    It takes time to heal.  Time to master the diet.  Time to recover from a mishap (it happens to the best of us).  How much time?  Give yourself two years before freaking out.  Seriously.   You have a better chance dying from plain old heart disease than get refractory celiac disease.  So, direct your efforts to driving safely, exercise, no smoking, easy on the alcohol,  and make healthy food choices!   Here are the stats to prove it!   http://www.nsc.org/learn/safety-knowledge/Pages/injury-facts-chart.aspx But wait, heart disease and cancer were both on the same line....here is more about refractory which is RARE.  Most folks even diagnosed with it were found not to be diet compliant when they thought they were.  So, most refractory statistics are way off.   https://www.cureceliacdisease.org/wp-content/uploads/SU08CeliacCtr_v3final.pdf Please consider asking your doctor for referral for a support group.  It can be hard to deal with an AI issue.  I think it might help you learn to deal with your diagnosis and provide tips on how to handle your anxiety.  Even medication might help.  Limit your time on the internet and enjoy the good things in journey life!   Hugs!  
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