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


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#1 JulieAC

 
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Posted 09 January 2012 - 04:29 PM

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 didnt that make me sick? And does this happen to people even if they dont have Celiac but they went on a gluten-free diet for some other reason will they get sick if they started eating gluten again.

I would have rather never stopped eating gluten then live a life of eating a little bite and now getting sick.
  • 1
Diagnosed with Celiac Disease by blood work and biopsy March 2011.

I diagnosed myself by making doctor do blood test for Celiac, my only symptom was bloating, absolutely NO other problems including vitamin deficiency.

Mother was tested and results were negative. Father and Brothers doctor doesnt see need to test since he has no symptoms. No other family member has signs nor will get tested.

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#2 eatmeat4good

 
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Posted 09 January 2012 - 06:18 PM

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.
  • 6
Healing is a matter of time, but it is sometimes also a matter of opportunity.
--Hippocrates

#3 IrishHeart

 
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Posted 10 January 2012 - 07:25 AM

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!
  • 5

"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


#4 Skylark

 
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Posted 10 January 2012 - 09:27 AM

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.
  • 4

#5 kwylee

 
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Posted 10 January 2012 - 11:12 AM

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!
  • 1
K Wylee

Gluten Intolerant, Positive test, June 2010
Casein sensitivity, Positive test, June 2010
Reactive to soy, most processed foods & preservatives, June 2010

#6 kwylee

 
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Posted 10 January 2012 - 11:27 AM

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.
  • 2
K Wylee

Gluten Intolerant, Positive test, June 2010
Casein sensitivity, Positive test, June 2010
Reactive to soy, most processed foods & preservatives, June 2010

#7 GFinDC

 
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Posted 10 January 2012 - 04:36 PM

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 :D But we do learn from each other and that helps us get better.

And welcome to the site! :)
  • 0
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

#8 domesticactivist

 
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Posted 10 January 2012 - 06:38 PM

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.
  • 1
Our family is transitioning off the GAPS Intro Diet and into the Full GAPS Diet.
Gluten-Free since November 2010
GAPS Diet since January/February 2011
me - not tested for celiac - currently doing a gluten challenge since 11/26/2011
partner - not tested for celiac
ds - age 11, hospitalized 9/2010, celiac dx by gluten reaction & genetics. No biopsy or blood as we were already gluten-free by the time it was an option.
dd - age 12.5, not celiac, has Tourette's syndome
both kids have now-resolved attention issues.

#9 eatmeat4good

 
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Posted 10 January 2012 - 06:42 PM

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.
  • 1
Healing is a matter of time, but it is sometimes also a matter of opportunity.
--Hippocrates

#10 BettyG

 
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Posted 11 January 2012 - 11:03 AM

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.
  • 2

#11 kareng

 
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Posted 11 January 2012 - 11:23 AM

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.
  • 4

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#12 IrishHeart

 
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Posted 11 January 2012 - 11:49 AM

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! :rolleyes: 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.

:)
  • 3

"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


#13 Skylark

 
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Posted 11 January 2012 - 12:22 PM

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.
  • 5

#14 cyberprof

 
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Posted 11 January 2012 - 01:15 PM

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.
  • 3
Diagnosed by biopsy 2/12/07. Negative blood tests. Gluten-free (except for accidents) since 2/15/07. DQ2.5 (HLA DQA1*05:DQB1*0201)

Son, age 18, previously delayed growth 3rd percentile weight, 25th percentile height (5'3" at age 15). Negative blood work. Endoscopy declined. Enterolab positive 3/12/08. Gene results: HLA-DQB1 Molecular analysis, Allele 1 0201 HLA-DQB1 Molecular analysis, Allele 2 0503 Serologic equivalent: HLA-DQ 2,1(Subtype 2,5) Went gluten-free, casein-free 3/15/08. Now 6'2" (Over six feet!) and doing great.

"Great difficulties may be surmounted by patience and perseverance." Abigail Adams (1744-1818) 2nd First Lady of the United States

#15 JulieAC

 
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Posted 11 January 2012 - 04:42 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!
  • 1
Diagnosed with Celiac Disease by blood work and biopsy March 2011.

I diagnosed myself by making doctor do blood test for Celiac, my only symptom was bloating, absolutely NO other problems including vitamin deficiency.

Mother was tested and results were negative. Father and Brothers doctor doesnt see need to test since he has no symptoms. No other family member has signs nor will get tested.




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