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Why Do I Now Get Sick From Gluten When I Didn't Before Going Gluten Free


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#16 Skylark

 
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Posted 11 January 2012 - 06:24 PM

Well then, I apologize for my strong post. I have to be honest - you shocked me. I mean REALLY shocked me. Please understand that my post was out of honest concern. I am very happy to hear that you will be staying gluten-free.

I can answer some of your questions because I am a scientist and read the celiac literature like a fiend; probably more than your doctors do. Some references by way of apology?

You have what doctors call silent celiac disease. There are definitely people who are a 1 on a 1 to 10 scale, but no way of predicting who will be the 1 and who will go on to become a 10. You might find this study useful, where an age-matched cohort is compared. In the celiacs where the disease stayed silent, there was risk of worse bone health, hypothyroidism, and lower ferritin but no increase in morbidity or mortality. http://www.ncbi.nlm....pubmed/20685275 Notice how some of the folks in the study developed symptomatic celiac during the study showing it's progressive nature. Others were fine.

Celiac disease can be progressive. We also tend to develop autoimmunity, particularly thyroid autoimmunity, and other forms of autoimmunity don't go away by stopping gluten. 30% of celiacs have least one other autoimmune disease, and the gluten-free diet is somewhat protective against developing more. This study talks about the various ways celiac shows up, in both celiacs with GI symptoms and silent. There can be anemia, joint pain, neurological autoimmunity and neuropathy, and there is an increased risk of some cancers.
http://www.ncbi.nlm....pubmed/15825130

As for your family, celiac is genetic but the incidence is rising and it's not simply a result of improved diagnosis. http://www.ncbi.nlm....pubmed/17944736 It is entirely possible that you are the first person in your family to develop the autoimmunity on a susceptible genetic background. There is no way to know whether you would stay similarly healthy eating gluten; chances are reasonable that it would catch up with you in some way.

It's also reasonably likely that you would have started reacting to gluten whether or not you kept eating it, so don't feel like going gluten-free was the cause of your strong reactions now. Also we've noticed around here that pregnancy tends to trigger and/or worsen celiac. That may be the reason for your powerful reaction to the pizza.
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#17 IrishHeart

 
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Posted 12 January 2012 - 07:18 AM

I started questioning my gluten free diet because I felt I had lost all social side of my life it was not for the occasional pizza or cookie because I hardly eat those items anyways.

I thought about it long and hard and asked my OB her opinion if it would be of any harm to try eating gluten again and she said “NO”! I agree that I should not have taken her advice and rest assured before I even posted my question I was not planning on eating gluten again.

I have found that no one is truly an expert on Celiac. There is still a lot of research that needs to be done. Half the time my specialists can’t even answer what I think are simple questions like “are there different degrees of Celiac?” “From a scale of 1 to 10 do some develop extremely bad symptoms at a 10 were others are a 1 and hardly have any issues and could go on living eating gluten?” If the medical community cannot even answer this simple basic question I find it hard to believe anything I read about Celiac Disease unless the person has science to back it up.


Julie,

You can now tell your OB that she could not be more wrong and she should not give advice about Celiac Disease if she does not know how the disease mechanism works. Telling a Celiac it's okay to eat gluten? Are you kidding me??? :angry:

There are some very reputable experts on Celiac, hon--Dr. Guadalino, Dr. Fasano, Dr. Green, among others. They have devoted their lives to scientific research. This is why we suggested you do some reading.

Everything I have read explains pretty clearly that there are several types of Celiac--including Silent Celiac ---which seems to be how yours manifests.

Skylark has provided you some good resources.

but the answer is still the same---no matter what your symptoms are---mild or horrible---you should not eat gluten. I cannot believe the doctor who diagnosed you did not make that clear, but EVERYTHING WRITTEN ABOUT IT STATES THIS EMPHATICALLY.

Do the "average doctors" know anything about celiac disease?

Not much <_< --I saw dozens of them in every specialty including a Gastroenterologist. Even he missed it. And I saw HIM for 12 years!

I do not know how you can possibly say there is no science to back it up, Julie. That is just not true, honey.

Much has been written about it that is supported by science. Here:

http://sites.google..../jccglutenfree/

http://www.celiac.or...e&id=3&Itemid=9

http://celiaccenter.org/

http://www.cureceliacdisease.org/

You may wish to read some more about it. I have read so much, my eyeballs hurt, :blink: but I do it so I can understand what went so wrong in my body.

I think you are right about the phases many go through when we are first DXed--grief, anger--and right now, you may be having some denial because you do not have overt symptoms and you are (seemingly)the only one in the family with symptoms--ones that they recognize as celiac-related anyway. I do understand why you think this way, I really do!

But you need to know what you are dealing with--inside and out--because it is possible that your children may inherit it as well. That's been proven scientifically---that it is an inherited disease.

I said the same thing. Why I am the first one with Celiac in my large family? Someone has to be diagnosed first, that's why. Now, all of my family's various AI diseases--and my parents' health histories--make SENSE.

It is not easy being the "trailblazer"--and honestly, none of them want to really hear about it or think gluten is an issue for them because no one is as sick as I was.

It's up to you what you do with the information, of course. But the science speaks the truth--and we are trying to help you----but if you choose to deny it, well, that's your decision, too.

I am only trying to help you see what the disease can do if you do not take gluten out entirely.

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

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

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

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

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

"LTES"  Gem 2014

 

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


#18 DaJa

 
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Posted 12 January 2012 - 01:36 PM

Im sorry that everyone attacked you for your hopes. All of you are a little paranoid about gluten since we need to avoid it on daily bases without getting sick and without feeling so isolated.Sometimes we are even judgemental and angry why people eat it when it makes YOU sick. I admire your hope and courage for trying and believing in the higher power it reminds me of myself few months ago when i got really sick. No point of explaining how i felt since we all know it and it not nice story to listen to. My point was , no one in my family has Celiac, everyone are very healthy and live long lifes , by some chance i have it and undortunately have to learn how to accept and live with it . What you are experiencing is very normal reaction and is part of the acceptance/denial/anger we all go through.
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#19 IrishHeart

 
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Posted 12 January 2012 - 02:10 PM

Im sorry that everyone attacked you for your hopes. All of you are a little paranoid about gluten since we need to avoid it on daily bases without getting sick and without feeling so isolated.Sometimes we are even judgemental and angry why people eat it when it makes YOU sick. I admire your hope and courage for trying and believing in the higher power.


I am not paranoid, judgmental or angry at all. In fact, I am so reasonable, I try to do all I can to stop people from being paranoid about following a gluten-free lifestyle. And it does not matter if someone only gets a bit of gas from gluten or if they are struck blind---they are still symptoms of the same disease. And to say we are angry and judging her because she does not get as sick as we do is an astonishing and baseless comment.

Whether you believe it or not, purposefully ingesting gluten is hazardous if you are a Celiac.

We are explaining the LONG TERM consequences because we CARE. I am getting a little tired of defending what was said here to help this young woman, but I'll try one more time because it is important and because if you know me, you know I never give up.

We are mostly realists who deal with the harsh reality of what this disease does to the body. If you come on this forum looking for help, you are getting loving assistance from the people who LIVE with it and have overcome great difficulty, illness and major health complications as a result of celiac disease.

We want to help.

We know what needs to be done to stay healthy. Many of us could have degrees in "glutenology" for all the research we have done.

We know more than most doctors. That's not bragging; that's a stone cold fact.

I am not sure what you are suggesting here...and please, correct me if I am misunderstanding what you said, but it sounds as if you are saying that it is okay to consume gluten and believe/hope that a higher power will save you from harm?

If so, I am speechless. :unsure:

And it takes a lot to make IH speechless.

My higher power tells me to use the wisdom I have been given and to follow the KNOWN course of treatment for Celiac Disease. No Gluten, period.
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

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

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

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

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

"LTES"  Gem 2014

 

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


#20 Skylark

 
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Posted 12 January 2012 - 02:38 PM

None of us are paranoid, judgmental or angry.

Well, some of us have our judgmental days. :lol:

Paranoid, no. Seems like a pretty pejorative word to use for ones first post on a new message board. Hang around a while and you will start to understand that a little gluten can hospitalize some people, and that the long-term consequences of celiac disease can be far more serious than doctors know (or care to admit). We try really hard to help out and keep people from finding the dangerous pitfalls the hard way. There is a lot of collective wisdom on this board.
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#21 IrishHeart

 
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Posted 12 January 2012 - 02:43 PM

Well, some of us have our judgmental days. :lol:




:lol: :lol: We posted simultaneously...You will notice I edited that to say "I"---so as to not speak for the rest of the choir. ;)
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

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

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

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

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

"LTES"  Gem 2014

 

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


#22 GFinDC

 
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Posted 12 January 2012 - 03:49 PM

I tend to agree with you on the paranoid thing, not strictly speaking paranoiia, ( what, who said that ! :unsure: :blink: ) but the idea that we are highly tuned to think about avoiding gluten and consider it a big, bad problem much more so than a person new to celiac and the gluten-free diet might. Or new to the site might for that matter. When I first went gluten-free and I read posts on this board about people reacting to crumbs I thought that was kind of out there, crazy, whacko, extreme, fantabulous etc. Danged if the same thing didn't happen to me though a few weeks after going gluten-free. I then realized I really did need to clean my toaster completely. And not long after that I bought a shiny new toaster. And I read the posts and warnings on the board about cross-contamination a little more closely too.

I guess what I am saying is I didn't take gluten-free totally serious at first myself, but I learned the hard way to do so. As they say the school of hard knocks is the best teacher. But maybe not the most fun teacher.

I know sometimes I forget how it was for me at first. Not really knowing much about gluten or where it could hide, or what the heck I could eat safely. I spent at least the first 12 months just reading and researching about celiac and learning as much as I could, much of which I promptly forgot due to brain fog or male pattern baldness or some such thing. :) I never did have a great memory. I do remember though how helpful the people on this board were to me as a newbie. Celiac disease is a serious condition and has a potential to do serious harm to a person. That may not be something new people fully realize though. Everyone has to come to terms with having this condition in their own way and in their own time. Some people wait until they have extremely serious consequences before taking the gluten-free diet to heart. I think we kind of hope to nip that attitude in the bud. But it always an individual's choice what they do with their own body. All we can do is give advise and make suggestions. Adjusting to the gluten-free diet is not an automatic thing for most of us, although some do find it easy. I think in cases where there are significant improvements in health and obvious negative reactions to gluten it is easier to stick with the diet and see the benefits. It's just that newbies don't always see it that way at first. But if they stick around we can help them with information and suggestions and maybe they can help us too.

I know from many months/years of reading posts by the other people on this thread that they are sincerely trying to find a way to help. Maybe we all get a little hyper-reactive when kids are involved, but that's not hard to understand I don't think. We aren't perfect but we do try to help.

Anyway, if that isn't one of the longest posts I ever did here I'd be surprised. I do hope all the new people give us old farts a break. We ain't at all such a bad, mean, grouchy bunch of cantankerous curmudgeoons as it may seem. Except maybe Crayon of course, she has robot blood as we all know. :D If you who are new want to see our less serious side, take a gander at the Funny pages / Tickle Me Elbow thread in the gab chat forum. We have our most erudite thoughts enshrined there for posterity. Please join us if you care to as we are very happy to have new people. You will soon see we don't always know everything or consider ourselves experts on every topic. But opinions on every topic, now that's a different story! :D
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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#23 srall

 
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Posted 12 January 2012 - 05:27 PM

I admit I am completely paranoid about gluten. This comes from years of chronic fatigue, secondary infertility, miscarriage, migraines, rashes and very very bad joint pain...not too mention more than once having to give myself permission to just go to the bathroom in the car because I didn't think I could get home in time (for the record I made it every time).

And then I am paranoid on behalf of my young daughter who by age 7 was so sick she had fevers and strep more days than she was healthy, rashes, distended belly, sunken eyes, ruined teeth, ADHD, chronic diarrhea...and oh, I was gearing myself up for a cancer diagnosis, was thankful it was only gluten and dairy (and corn) so...um, yep. Terribly paranoid.

And unapologetic.
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#24 IrishHeart

 
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Posted 12 January 2012 - 05:52 PM

Paranoia is a thought process based on fear and anxiety to the point of irrational and delusion thinking. You are not delusional and irrational, are you?

Fearing that something bad or harmful might happen does not in itself suggest paranoia. Those fears may be based on past experiences--and not wishing to repeat anything that will recreate them.

I do not think your careful avoidance of gluten is paranoia necessarily--I think you are very careful--and with good reason. None of us wish to re-live the horror that celiac created--
but the last thing I am going to be is paranoid for the rest of my life. A waste of precious energy.

I am trying to tell this woman--and any other newly DXed people for that matter--- that she needs to be careful and avoid gluten.
That's it.

But I never think being paranoid is beneficial to anyone's well-being. IMHO

There is no need for paranoia. :) That just makes the already difficult transition into this lifestyle extra stressful. Stress that taxes the immune system--is something we do not need.

( and I am hoping this discussion does not take any further turns away from the original topic. The OP is already upset enough as it is. )
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

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

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

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

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

"LTES"  Gem 2014

 

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


#25 srall

 
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Posted 12 January 2012 - 06:02 PM

Paranoia is a thought process based on fear and anxiety to the point of irrational and delusion thinking. You are not delusional and irrational, are you?

Fearing that something bad or harmful might happen does not in itself suggest paranoia. Those fears may be based on past experiences--and not wishing to repeat anything that will recreate them.

I do not think your careful avoidance of gluten is paranoia necessarily--I think you are very careful--and with good reason. None of us wish to re-live the horror that celiac created--
but the last thing I am going to be is paranoid for the rest of my life. A waste of precious energy.

I am trying to tell this woman--and any other newly DXed people for that matter--- that she needs to be careful and avoid gluten.
That's it.

But I never think being paranoid is beneficial to anyone's well-being. IMHO

There is no need for paranoia. :) That just makes the already difficult transition into this lifestyle extra stressful. Stress that taxes the immune system--is something we do not need.




Nope...I'm just careful. Very careful. :) I was just trying to make the point that this is not something to be taken lightly, or to get after people for taking it too seriously.

And to turn this back to the OP: Honestly I had to intentionally gluten myself one time to really get how serious this is. I was on vacation and I thought...gluten free is just too hard so I let loose a little bit. Then ended up in bed for 3 weeks. I've learned a lot since then, and I really have felt this forum to be more helpful than anything else. I've referred a lot of friends here too.

I believe you're a great mom. Hopefully you won't be turned off from the site. I have been here a long time and I'm telling you the most helpful and caring people responded to your post. I think when babies or kids are involved we just get worried...it's a pretty serious situation.

(

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#26 psawyer

 
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Posted 12 January 2012 - 06:30 PM

This seems to have gone off topic in a big way. Please limit your replies to those that are responsive to the original poster and her original topic, and are constructive.
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Peter
Diagnosis by biopsy of practically non-existent villi; gluten-free since July 2000.
Type 1 (autoimmune) diabetes diagnosed in March 1986
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#27 beebs

 
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Posted 12 January 2012 - 06:31 PM

But anyhow -back to your original post - your reaction to gluten will likely become more and more severe. Its the way of the world - mine are far worse now than when I was eating it every day. Doh!
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HLA DQ8, gluten-free since January 2011

#28 IrishHeart

 
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Posted 12 January 2012 - 08:14 PM

Nope...I'm just careful. Very careful. :) I was just trying to make the point that this is not something to be taken lightly, or to get after people for taking it too seriously.

And to turn this back to the OP: Honestly I had to intentionally gluten myself one time to really get how serious this is. I was on vacation and I thought...gluten free is just too hard so I let loose a little bit. Then ended up in bed for 3 weeks. I've learned a lot since then, and I really have felt this forum to be more helpful than anything else. I've referred a lot of friends here too.

I believe you're a great mom. Hopefully you won't be turned off from the site. I have been here a long time and I'm telling you the most helpful and caring people responded to your post. I think when babies or kids are involved we just get worried...it's a pretty serious situation.

(



Thanks for coming back to share your experiences. I know you have worked hard to make things safe for you and your daughter.

( maybe I am a tad paranoid about the use of the word "paranoid" on the forum sometimes :lol: )
All the best,
IH
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

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

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

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

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

"LTES"  Gem 2014

 

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


#29 naserian

 
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Posted 12 January 2012 - 11:15 PM

I cant believe the response that my post created. Thank you to those that provide positive and helpful comments. For the others, how dare you judge me for being a bad mother you dont know my background and who I am. I would never pass judgment on others especially without knowing them.

First off I have taken being gluten free very seriously from day one. The day I found out I immediately removed gluten from my diet and got all new kitchen supplies. You all should know from experience and what I have read is that most of us go through a phase of depression with Celiac. Everyones story is different so no one should judge anyone. My story goes like this my first son was only 9 months when I found out I had Celiac. I was trying to learn to be a new parent and deal with now having Celiac. I even had my son tested and the genetic test for the gene as I will with this baby. Then six months after being diagnosed I was blessed and got pregnant again. My first trimester was horrible so tired I couldnt function and feeling sick all the time. I felt horrible for 3 months and could hardly eat anything and started to lose weight. But the only thing that sounded good was some of the old foods I used to eat, gluten free actually made me feel sick. I have and always will be a super healthy person eating right and exercising everyday (even up to the day I gave birth). If you have been pregnant you know that your hormones get way out of whack. I started questioning my gluten free diet because I felt I had lost all social side of my life it was not for the occasional pizza or cookie because I hardly eat those items anyways.

I thought about it long and hard and asked my OB her opinion if it would be of any harm to try eating gluten again and she said NO! I agree that I should not have taken her advice and rest assured before I even posted my question I was not planning on eating gluten again.

I have found that no one is truly an expert on Celiac. There is still a lot of research that needs to be done. Half the time my specialists cant even answer what I think are simple questions like are there different degrees of Celiac? From a scale of 1 to 10 do some develop extremely bad symptoms at a 10 were others are a 1 and hardly have any issues and could go on living eating gluten? If the medical community cannot even answer this simple basic question I find it hard to believe anything I read about Celiac Disease unless the person has science to back it up. It sounds like many of you have extreme cases so you want to spread the word and I can appreciate that but without more research we just dont know. No one in my family has had a lifelong of pain and suffering and two Grandmas lived to over 85 and my grandpa is still alive at 90. So if no one in my family has suffered the consequences of eating gluten/Celiac Disease and it is a genetic disease so I got it from someone where is the science to show why this is the case?

Think twice next time you pass judgment on others!



I am not a doctor ,i can not answer any question as if i am but i am Gluten intolerant/Sensitive and i talk through experience. I am gluten free for two years it can be difficuld only the times you will let it to be. Celiac/Intolerance for me is like a spectrum i broad rage of differend ways of affecting someone who have it it can affect gut,skin and nervous system ,you can be born with it or develop it later ,it can affect your brain fuction,you may get negative blood test but it doesnt mean it doesnt affect you in any way . No one has a reason to hate you or not be supportive. I guess you may be on denial ,what shocked the most is that you are pregnand and you dont have the time to take a risk to eat something its bad for you ..its not safe to eat gluten since no one knows how this will affect your baby . Its unpredictable you never know any time how it will affect you and the impact of it...in my county we have a quotation....take care of your clothes to be able to keep the half of them .
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#30 kaity

 
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Posted 13 January 2012 - 05:05 AM

no one can judge anyone, i am like u i dont believe the doctors untill i see it for my own eyes, i am sure now u r convinced that you really have celiac, when my son was diagnosed i put him on a strict diet for about 2 months he changed dramatically over that period, but i was still not convinced i thought to my self maybe it is a coincidence so it was birthday and everyone was eating cake, if i would have known that they were going to do me a beirthday party i would have got him his special cake but i didnt know, so everyone was eating cake and he was nagging(he was 2.5 then) so i said to my self what is the worst thing that can happen so i gave him a piece of cake, about one hour later he started crying adn throwing up, ii called the doctor he said that becasue his digestive system was healed and suddenly he ate somethign that triggered it, but before it was already damaged so no more damage was being done that is why every once in a while he would throw up not every time he ate gluten

for those who had bad criticism for what you did i tell them that i would rather get my son exposed to gluten and see the reaction with my own eyes than him be diagnosed by the doctor with celiac and i am not convinced, at least now i make 100000% sure that my son's environment is gluten free

and i am sure that now after u saw your reactions you are going to do the same thing... good luck with your pregnancy
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