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

[JulieAC]

Nine months ago I was diagnosed with Celiac Disease. My only symptom for it was bloating. I have been on a gluten free diet ever since but over the past couple of months I have decided that I would rather suffer the long term consequences and bloating and eat gluten again. Four weeks ago I had 3 bites of a cookie then a week later a piece of bread with no side effects so I thought I would be fine. Well a week ago I ate two pieces of pizza and I was vomiting two hours later and it took me a day of having a nausea stomach to recover. Last night I had two bites of something that could have been contaminated and was sick again.

My question is why if I never got sick eating gluten before am I now getting sick? Let me add I am 18 weeks pregnant and not sure if it is making my reaction to gluten 10x worse. Also I assume I had to have been contaminated over the past 9 months and why didn

[eatmeat4good]

People who do not have Celiac/Gluten Intolerance can go on and off of gluten as many times as they like with no reaction. However, those of us with Celiac/Gluten Intolerance will have reactions ranging from mild to severe with some reactions so mild that they are imperceptible. However, damage is still being done to your intestines if you are Celiac. If you were very good at avoiding gluten for those 9 months then the antibodies produced by your body may have calmed down. Then you ate the bites of cookie. Your body recognized the enemy but it had sent all the soldiers home...the antibodies may not have been there anymore. Then you ate the bread. Your body said WTF?? Gluten is back? Let's call in the troops and mount for a huge attack on the enemy. So the antibodies built up in ready for another gluten invasion. Then you ate the pizza and the war was on. Nausea and vomiting and feeling awful and damaging your intestines. You can't feel the antibodies your body produces. Celiac is an autoimmune disease. Likely you would not have been able to go on eating gluten with only mild symptoms for the rest of your life. If you had not stopped eating gluten, there would have been other symptoms like thyroid disease, miscarriages, depression, anxiety, muscle weakness, headaches. The list is over 300 symptoms so your body could have presented you with a lot more problems if you had not stopped gluten. This is not a preference thing. If you are pregnant you really need to be very careful. Many of us have had miscarriages before we were diagnosed with Celiac. It is very common among women with Celiac. find some gluten free alternatives for you pizza and cookies. For some of us the reactions intensify over time. The body is so relieved to be rid of gluten that it reacts strongly when even traces of gluten or cross contamination happen. Sometimes reactions appear to go away. That is why they used to say that children outgrew Celiac. Then they learned these people developed secondary autoimmune diseases and suffered from vitamin deficiency diseases and maybe developed lymphoma from untreated Celiac. We now know you cannot outgrow it. And you cannot prevent the damage from gluten if you are Celiac. And the only treatment is being strictly gluten free.

[IrishHeart]

I am always very sad when I read a post such as yours. We just had another young woman tell us she would rather eat a dinner roll and be happy for the moment than care about the future consequences. I gave her a similar "lecture" (so get ready ) and told her if she were my daughter, I'd boot her in the arse (figuratively speaking) for being so ridiculous.

You need to read about Celiac Disease--- as it is obvious you do not understand how the disease process works or why consuming gluten is a dangerous decision. In a sense, you are "lucky" ----you "only had bloating" but that does not mean you are any less susceptible to suffering the same consequences as the rest of us who have more obvious symptoms. I assure you, the bloating is nothing compared to what is going on INSIDE you.

EATMEAT4GOOD has done a great job explaining WHY you feel so yucky right now--but you really need to get it through your head that NO gluten is safe. Sorry, hon--but I'm giving it to you straight right now because you are treading in dangerous waters, especially because you are pregnant.

Saying you would rather "suffer the long term consequences and bloating so you could eat gluten again" is about as reckless as it gets--ESPECIALLY since you will soon be raising a child. You will need to be healthy and strong--not have your immune system in distress.

You KNOW there are long-term consequences----you just said it---yet you do not seem to care. For what? A bite of a cookie, some pizza? There are plenty of gluten-free alternatives available to make or purchase--pizza, cookies and breads ---to satisfy your cravings.

I am especially concerned about your attitude--or perhaps naivete?-- because so many of us who were DXed later in life would have given anything to know what we were dealing with at a much younger age--- so we could have been spared a lifetime of ill health and the debilitating and tragic consequences of Celiac. I lost the last 4 years of my life --literally, it all came to a stand still--as I was trying to figure out what had struck me down to the point where I wondered if death would be easier. I was in HORRIFIC pain 24/7 and in such a fog from gluten and malabsorption, I lost my ability to think clearly, comprehend new information, read, articulate and even drive my car. I could not eat or drink ANYTHING and keep it in me. I lost 90 lbs. and all my strength. I was awake every night for hours, FOR TWO YEARS --anxious and agitated and out of my head from dehydration and illness. If I had not lived it, I would find it difficult to believe it myself.

I refused to give up. Once I learned what Celiac can do, I came to regard gluten as poison. I call it my "kryptonite".

That is how you must think of it as well.

I can list a few of my "long term consequences" for you: I suffered devastating multiple miscarriages and failed fertility treatments,(and sadly, never being able to carry to term) because of undiagnosed celiac disease ; a very early menopause with painful endometriosis, uterine and ovarian fibroids, cysts, and mercifully, a hysterectomy; gall bladder disease, osteoarthritis, osteopenia, serious dental issues, severe migraines, a burning GI tract from mouth to rectum, chronic insomnia, crippling chronic spine, bone and joint pain, burning neuropathy, impaired brain function, ataxia, endocrine system disorders, including thyroiditis and hypoglycemia; hypocalcemia, B-12 & Folate deficiency anemias, severe hair loss, massive loss of muscle mass and tone (I am in physical therapy and massage therapy twice a week for the last 2 years trying to regain my strength and my ability to walk, stand and lie down without pain. At one point, I could not open a jar or lift a soup can).......shall I tell you more?

No, I am sure you get the picture. Do not think you can't develop more problems than just bloating. You're just kidding yourself. kiddo.

This isn't about the food, honey!!----because there are plenty of yummy gluten-free alternatives to eat. It's about the chance to live your life in a healthy and happy way.

Just stay off gluten.

Be healthy and happy and be around to watch your children grow up.

Best wishes to you!

[Skylark]

You are 18 weeks pregnant, celiac, and eating gluten? If we were in person I would slap you, same as I would slap a pregnant woman drinking alcohol. Active celiac disease causes miscarriages; you might not have even conceived had you not stopped eating gluten. As if that wasn't enough, poisoning yourself makes you a worse mother for that child. At least your body has enough sense to recognize poison now.

You want my consequences of undiagnosed celiac? I almost landed in a mental hospital for bipolar illness which resolved gluten-free, and I have Hashimoto's that is slowly burning out my thyroid gland. My grandmother was so osteoporotic she had a hunchback and her foot collapsed under her, and my mother has permanent neurological damage from autoimmunity and B12 deficiency. This is not a diet you play around with because you don't have the fortitude to say "no thanks" to a dinner roll.

[kwylee]

People who do not have Celiac/Gluten Intolerance can go on and off of gluten as many times as they like with no reaction. However, those of us with Celiac/Gluten Intolerance will have reactions ranging from mild to severe with some reactions so mild that they are imperceptible. However, damage is still being done to your intestines if you are Celiac. If you were very good at avoiding gluten for those 9 months then the antibodies produced by your body may have calmed down. Then you ate the bites of cookie. Your body recognized the enemy but it had sent all the soldiers home...the antibodies may not have been there anymore. Then you ate the bread. Your body said WTF?? Gluten is back? Let's call in the troops and mount for a huge attack on the enemy. So the antibodies built up in ready for another gluten invasion. Then you ate the pizza and the war was on. Nausea and vomiting and feeling awful and damaging your intestines. You can't feel the antibodies your body produces. Celiac is an autoimmune disease. Likely you would not have been able to go on eating gluten with only mild symptoms for the rest of your life. If you had not stopped eating gluten, there would have been other symptoms like thyroid disease, miscarriages, depression, anxiety, muscle weakness, headaches. The list is over 300 symptoms so your body could have presented you with a lot more problems if you had not stopped gluten. This is not a preference thing. If you are pregnant you really need to be very careful. Many of us have had miscarriages before we were diagnosed with Celiac. It is very common among women with Celiac. find some gluten free alternatives for you pizza and cookies. For some of us the reactions intensify over time. The body is so relieved to be rid of gluten that it reacts strongly when even traces of gluten or cross contamination happen. Sometimes reactions appear to go away. That is why they used to say that children outgrew Celiac. Then they learned these people developed secondary autoimmune diseases and suffered from vitamin deficiency diseases and maybe developed lymphoma from untreated Celiac. We now know you cannot outgrow it. And you cannot prevent the damage from gluten if you are Celiac. And the only treatment is being strictly gluten free.

This is a great explanation to a question I get asked alot. Thanks! I'm going to be quoting you on this!

[kwylee]

Let me add I am 18 weeks pregnant...

I would have rather never stopped eating gluten then live a life of eating a little bite and now getting sick.

Shame on me for skimming over your original comments and missing the most tragic sentence. I'm glad you have started to follow the forum, because clearly you didn't realize what gluten is capable of doing. I can't say anything better and more directly than those comments above. I truly hope you read and reread those words, and please show the intelligence and mindset that your unborn baby (and probably the beautiful baby as your profile pic) is counting on.

[GFinDC]

Nine months ago I was diagnosed with Celiac Disease. My only symptom for it was bloating. ...

Hi Julie,

That seems to be fairly common actually. People seem to have stronger reactions after going gluten-free. I know I did, or at least thought I did. Celiac destroys the villi lining your small intestine. Those villi help you absorb nutrient vitamins and minerals that your body needs. When they are damaged you may not be able to absorb those nutrients and therefore develop disease conditions due to starving your body of them. That doesn't mean you will automatically lose weight, some people even gain weight. But you should probably ask your doctor to check your vitamin and mineral levels.

The gluten-free diet is a tough adjustment for some people. But you can get used to it after while. There are lots of options for other things to eat. The recipe section of the board has tons of things to try. There are also threads on breakfast ideas and snack ideas, lunch and dinner threads too. Crock potting seems popular.

It is also a very healthy diet, if you go with a whole foods approach. Cooking all your meals from whole foods avoids lots of preservatives, food colorings, and other stuff that is not really food but additives.

Something to think about is the hereditary aspect. Your kids may develop celiac also. So knowing how to eat gluten-free may be helpful to your kids as they grow up.

You aren't the only person who has had complaints about the gluten-free diet of course. There are lots of threads here by people who aren't real happy about having celiac at times. Venting is fine. We are kind of used to it But we do learn from each other and that helps us get better.

And welcome to the site!

[domesticactivist]

Normally I'd say it's your business if you want to eat gluten despite the damage and suffering. But by now you must be aware that you could lose your baby over this. I doubt that's a consequence you are willing to risk.

Being pregnant may be making sticking to the diet more difficult emotionally, but hopefully it will also give you the motivation you need to stay gluten-free at least until after your child is born.

Have you looked into getting the help of a therapist so that you'll have someone you can talk to about the feelings you are experiencing? It's normal to go through the stages of grief (sometimes repeatedly) after getting a diagnosis. Being able to talk in person with someone who understands might help.

[eatmeat4good]

This is a great explanation to a question I get asked alot. Thanks! I'm going to be quoting you on this!

Thank you sweetie.

Quote all you want.

Knowledge is power.

People need to know.

[BettyG]

Hi JulieAC,

I, too, was recently diagnosed with celiac and am having a hard time adjusting. I feel your pain. That's one of the reasons why I came to this site, to get support on managing the disease and the emotions I'm going through. Which is why I'm amazed and so upset that people are threatening to "slap you". No one has the right - no matter what they have gone through - to threaten anger or violence towards another person. It is because they have walked the path that you are beginning on that they should be more understanding.

I really appreciate reading the advice from eatmeat4good and GFinDC, but unfortunately what stands out from this chain are the vile posts in between. I came looking for help in what is proving to be a difficult time and I found hate. I will continue to look for another forum for support because I'm not sure I can find it here. I wish you luck on your journey, JulieAc.

[kareng]

Hi JulieAC,

I, too, was recently diagnosed with celiac and am having a hard time adjusting. I feel your pain. That's one of the reasons why I came to this site, to get support on managing the disease and the emotions I'm going through. Which is why I'm amazed and so upset that people are threatening to "slap you". No one has the right - no matter what they have gone through - to threaten anger or violence towards another person. It is because they have walked the path that you are beginning on that they should be more understanding.

I really appreciate reading the advice from eatmeat4good and GFinDC, but unfortunately what stands out from this chain are the vile posts in between. I came looking for help in what is proving to be a difficult time and I found hate. I will continue to look for another forum for support because I'm not sure I can find it here. I wish you luck on your journey, JulieAc.

Sorry you feel that way.. This woman is harming her baby. People on here don't let that sort of thing go by with " oh, poor girl! Do what you want even if it kills your baby."

I think people are hoping that by pointing out what she is doing to the baby, it will shock her into trying to do what is right for her health and the babys's. And if she didn't realize how serious her actions were, hopefully she does now.

[IrishHeart]

Hi JulieAC,

I really appreciate reading the advice from eatmeat4good and GFinDC, but unfortunately what stands out from this chain are the vile posts in between. I came looking for help in what is proving to be a difficult time and I found hate. I will continue to look for another forum for support because I'm not sure I can find it here. I wish you luck on your journey, JulieAc.

I am sorry you interpreted anything that I said as "hateful" or vile. I do not see that in any of my words. I suggest you re-read what I have said before you make such statements. On the contrary, my heart aches for anyone who is stricken with this disease and the last thing I would want is for anyone to suffer what I have suffered for so long.

I am always very supportive of anyone new to this forum and I have given many newbies a shoulder to cry on and I have offered dietary and nutritional recommendations. You are new here--so you may not have seen enough posts to know how much we all care for others on here.

If someone makes a mistake we are the first ones to say "there, there, it's okay" and we have laughed and cried with each other through various life events. And when anyone is upset and needs to vent, we are here for them.

The one thing I will NEVER do, however, is enable someone to purposefully harm themselves by consuming the one thing we all know is hazardous to us.

If we are not honest, then what it is the point of asking for our experience and advice? Maybe you did not like the tone of some of the posts, but the people who offered their honest thoughts are all seasoned vets who are compassionate and caring and want the OP to take her DX seriously and stay healthy. I sincerely doubt anyone meant they would really do any physical harm--for pete's sake! I think it was a figure of speech.

I wish you well ---and hope you will reconsider sticking around so you can see all the good that is done here.

[Skylark]

I, too, was recently diagnosed with celiac and am having a hard time adjusting. I feel your pain. That's one of the reasons why I came to this site, to get support on managing the disease and the emotions I'm going through. Which is why I'm amazed and so upset that people are threatening to "slap you". No one has the right - no matter what they have gone through - to threaten anger or violence towards another person. It is because they have walked the path that you are beginning on that they should be more understanding.

I really appreciate reading the advice from eatmeat4good and GFinDC, but unfortunately what stands out from this chain are the vile posts in between. I came looking for help in what is proving to be a difficult time and I found hate. I will continue to look for another forum for support because I'm not sure I can find it here. I wish you luck on your journey, JulieAc.

You are new here and I can only assume you have no idea how many miscarriages undiagnosed celiac women have experienced. I was and still am shocked that someone could have a celiac diagnosis - not even gluten intolerant but celiac - and deliberately eat wheat during a pregnancy. I'm not the one hating here; JulieAC is the one who is risking a pregnancy over a piece of pizza! The thought of it makes my head spin! There is a real chance she could lose that baby. Maybe she's far enough along to not miscarry, but nobody knows that. Either way she will still risk her baby being born with malnutrition-related birth defects if she goes back to eating gluten.

Would you stand by and watch someone drink or do drugs during a pregnancy, or say something gentle and nice they might not listen to, or would you go to great lengths to try to get their attention?

We are very compassionate here, and if you stick around you will get a lot of support. I can only assume that you didn't take the time to read my other posts around the board, where I wasn't desperately trying to get someone's attention and help an unborn child with a loud and clear wake-up call.

[cyberprof]

BettyG and JulieAC,

I hope you both will stick around. While I totally disagree with some of the punative responses (a slap is never what I would think even in the abstract) but I do understand where they are coming from:

Untreated celiac = pain and needless suffering.

Eating wheat as a celiac while pregnant is a huge risk, both to mom and to baby.

There would be similar comments on a baby forum if a pregnant woman was admitting to drinking alcohol in a bar. What JulieAC and other newbies don't know is the number of babies miscarried or still-born by women on this forum and that's the reason for the response. We even have members who were born of untreated celiac mothers, and who were born with scurvy (malnutrition) as a result.

Internet forums by their nature always have some sort of controversy as not everyone will agree. But the knowledge available on this board, IMHO, is not available anywhere else.

[JulieAC]

I can

[Skylark]

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. Open Original Shared Link 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.

Open Original Shared Link

As for your family, celiac is genetic but the incidence is rising and it's not simply a result of improved diagnosis. Open Original Shared Link 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.

[IrishHeart]

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???

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:

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

You may wish to read some more about it. I have read so much, my eyeballs hurt, 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!

[DaJa]

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.

[IrishHeart]

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.

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.

[Skylark]

None of us are paranoid, judgmental or angry.

Well, some of us have our judgmental days.

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.

[IrishHeart]

Well, some of us have our judgmental days.

:lol: We posted simultaneously...You will notice I edited that to say "I"---so as to not speak for the rest of the choir.

[GFinDC]

I tend to agree with you on the paranoid thing, not strictly speaking paranoiia, ( what, who said that ! ) 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. 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!

[srall]

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.

[IrishHeart]

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. )

[srall]

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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