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Gluten Reaction- Is It Celiac?


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#1 rachelh4207

 
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Posted 21 March 2012 - 10:26 PM

My 2 yr old daughter has many, MANY signs of celiac so I went off gluten with her three weeks ago because I really felt that it was celiac and as many bowel issues as I have had in my life, I thought- "I probably have it too!".

My prior symptoms:
-horrible constipation every since I can remember- Even though I only drink water and we eat healthy
-Very gassy all the time- Rolling gas in my stomach a lot. PAINFUL!
-headaches
-irritability (I thought this was a normal thing for all women, but thought I would through it on the list too)
-Female problems- Very irregular cycles from the get go.
-Feeling tired all the time even though I get PLENTY of sleep at night (usually 9 hours)
-Easy bruising
-Nausea almost daily but don't throw up everyday- but do randomly when I am nauseated.
-had a colonoscopy in Nov and had a polyp (I am only 25)


So I went off gluten with my daughter so that it would be easier for me to keep up with it for her and because I thought, well it couldn't hurt! So all of a sudden I stopped having trouble getting out of bed in the mornings and my gas STOPPED! Nausea gone too. During my first week off of it, I was SO MOODY! I mean worse that I have ever been! But now I am pretty stable I guess- not so much mood swings.


I had oatmeal twice during this three weeks and had horrible gas afterwards that I thought was a sign, but last night I thought, maybe it was something else and I was imagining this whole thing. So last night when I was slicing our bread (we bake our own) I thought man this smells good. And so I had three slices. Around 10 PM. Just before 2am I woke up sweating and having horrible stomach pains and very very nauseated. Stomach rumbling and moaning. And very very thirsty! There is no way I am making this up or imagining this because the pain is severe and actually woke up me from a dead sleep. This NEVER happens.
So what now? Does this mean I could have celiac or at least a gluten intolerance? Or would someone else have had a reaction like this one if they went off gluten and then went back on? Should I be tested or what? i feel awful. But am almost grateful to have a reaction to tell me that this may be what my daughter felt ALL the time. And even thought we got negative tests (she was off gluten at the time)- it doesn't mean she doesn't have it maybe.
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#2 rachelh4207

 
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Posted 21 March 2012 - 11:00 PM

Also I should add that I was diagnosed with IBS as a teenager.
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Rachel

#3 ravenwoodglass

 
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Posted 22 March 2012 - 04:38 AM

It does sound like you have an issue with gluten. The being woken up at night is one sign it is not IBS because according to my GI that doesn't happen with IBS. If you want to be tested for celiac do get back on gluten for at least 3 months or so and then go in and get the blood work done and an endo if you feel the need for one. However you don't need a doctors permission to be gluten free but it might help your DD get a diagnosis which she will need to be kept safe in school as celiac is genetic.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#4 Cara in Boston

 
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Posted 22 March 2012 - 04:54 AM

If the tests were done when you were off gluten, they are useless. If you are wanting a shot at accurate tests, you need to be eating sufficient gluten for a sufficient amount of time (my MD said 4-6 months, but they all seem to differ). Even a short time gluten-free - a week - can alter the test results.

You don't need a diagnosis to eat gluten free. You will probably end up eating a healthier diet anyway. You will, however, need a doctors diagnosis for you child so that schools, camps, college dorms, etc. will be obligated to comply with your wishes to keep your daughter healthy.

If you have a supportive MD, you can get a diagnosis of "gluten intolerance" based on a positive response to the gluten-free diet. This should be enough for "proof".

But, if you decide later you want to get tested, the gluten challenge could be more difficult. The longer you are gluten free and healthy, the more sensitive you can become. Your future reactions to gluten may be much more severe that what you have experienced in the past - so continuing to eat gluten for the next few months and getting tested again might be easier now than waiting until later.

Hope this all makes sense.

Good luck-

Cara
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#5 rachelh4207

 
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Posted 23 March 2012 - 08:20 AM

Makes perfect sense. I would like to know if I have it, but with all the "false negative" stuff I am like, why bother? I think DD3 has so so so many signs to celiac so I know she NEEDS the gluten-free diet and now that I look over issues I have had, and my other three girls have had- I think, what if they have a gluten issue too?? Nothing as big as my dd3 but they all have weird vague symptoms. I want the whole family on gluten-free just to take the cooking two different meals stress off me, but I know i need to make SURE that is what we want.
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#6 surviormom

 
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Posted 10 April 2013 - 05:27 AM

I have been gluten free and doing well, but had some bob's red mill gluten free oatmeal, two days in a row, and feel nauseated both mornings.  What is wrong with oatmeal? 


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Gluten Free 2012 - Dairy Free 2012 - Acid Reflux Diet 2013

Chronic Gastritis 2013 - Peptic Duodenitis 2013 - Hiatal Hernia 2013 - C-Diff 2013 - Endometriosis 2013 - Uterine Fibroids 2013

Patellar Tendonitis 2013 - Arthritis 2014 - NCGI 2014 - Erosive Esophagitis 2014 - Barretts 2014


I have a long list of physical ailments that were being grouped into age/gender by doctors.

Began Gluten Free and Casein Free after an Allergy Test trying to find answers to health problems that the doctors just were not answering well enough. Looking back through history, I have a lifetime of allergies and gastro issues.


Learn from yesterday, Live for today, and Hope for tomorrow. The important thing is not to stop questioning.

Albert Einstein

#7 kareng

 
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Posted 10 April 2013 - 05:30 AM

gluten-free oatmeal does bother some Celiacs.  Most "experts" recommend you not eat it until you have been gluten-free 6 months - 2 years.  Seems to differ.  I think they mean you shouldn't eat it until you feel better (healed).


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Thanksgiving dinners take 18 hours to prepare.  They are consumed in 12 minutes.  Half-times take 12 minutes.  This is not a coincidence.  - Emma Bombeck
 
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#8 surviormom

 
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Posted 10 April 2013 - 06:31 AM

gluten-free oatmeal does bother some Celiacs.  Most "experts" recommend you not eat it until you have been gluten-free 6 months - 2 years.  Seems to differ.  I think they mean you shouldn't eat it until you feel better (healed).

Thanks.  I had been eating it, but had not had that great weight loss I had heard so many have.  So I thought there is still something in my diet wrong.  Spring Break.  I slept in just like the kids for 10 days, woke late had an apple just about every day, then lunch.  Skipped the oatmeal.  Now back to the oatmeal and 2 hours after I am sick each day.  It has to be the oatmeal.  Oatmeal go bye-bye.  You have a beautiful day.


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Gluten Free 2012 - Dairy Free 2012 - Acid Reflux Diet 2013

Chronic Gastritis 2013 - Peptic Duodenitis 2013 - Hiatal Hernia 2013 - C-Diff 2013 - Endometriosis 2013 - Uterine Fibroids 2013

Patellar Tendonitis 2013 - Arthritis 2014 - NCGI 2014 - Erosive Esophagitis 2014 - Barretts 2014


I have a long list of physical ailments that were being grouped into age/gender by doctors.

Began Gluten Free and Casein Free after an Allergy Test trying to find answers to health problems that the doctors just were not answering well enough. Looking back through history, I have a lifetime of allergies and gastro issues.


Learn from yesterday, Live for today, and Hope for tomorrow. The important thing is not to stop questioning.

Albert Einstein

#9 kareng

 
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Posted 10 April 2013 - 06:35 AM

Thanks.  I had been eating it, but had not had that great weight loss I had heard so many have.  So I thought there is still something in my diet wrong.  Spring Break.  I slept in just like the kids for 10 days, woke late had an apple just about every day, then lunch.  Skipped the oatmeal.  Now back to the oatmeal and 2 hours after I am sick each day.  It has to be the oatmeal.  Oatmeal go bye-bye.  You have a beautiful day.

 

 

The gluten free diet isn't about weight loss.  Eating less calories will give you weight loss. 


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Thanksgiving dinners take 18 hours to prepare.  They are consumed in 12 minutes.  Half-times take 12 minutes.  This is not a coincidence.  - Emma Bombeck
 
dancing-turkey.gif
 
 
 
 

 


#10 surviormom

 
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Posted 10 April 2013 - 06:35 AM

I slipped last week too, and had a 1" sliver of ice cream cake, it was my son's birthday.  But I paid for that, all week, that is how I have narrowed this down to oatmeal.  My how we have gotten to know our bodies.  :)


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Gluten Free 2012 - Dairy Free 2012 - Acid Reflux Diet 2013

Chronic Gastritis 2013 - Peptic Duodenitis 2013 - Hiatal Hernia 2013 - C-Diff 2013 - Endometriosis 2013 - Uterine Fibroids 2013

Patellar Tendonitis 2013 - Arthritis 2014 - NCGI 2014 - Erosive Esophagitis 2014 - Barretts 2014


I have a long list of physical ailments that were being grouped into age/gender by doctors.

Began Gluten Free and Casein Free after an Allergy Test trying to find answers to health problems that the doctors just were not answering well enough. Looking back through history, I have a lifetime of allergies and gastro issues.


Learn from yesterday, Live for today, and Hope for tomorrow. The important thing is not to stop questioning.

Albert Einstein

#11 surviormom

 
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Posted 10 April 2013 - 06:45 AM

The gluten free diet isn't about weight loss.  Eating less calories will give you weight loss. 

Yes, I just kept thinking it would be a bonus that if I had to give up all the foods I enjoyed so much, then there had to be a bonus to it, But I learned there were many other bonuses.  I feel better most of the time.  Joint pain is gone, except for yesterday, my hand hurt yesterday.  I feel energetic again, except this week.  Better mood.  No more itchy skin.  My hsuband has found a bonus in it.  And my dr. had written off many of my ailments as age and gender related.  WRONG.  I forced him to test me and it was negative, but the test was 6 months after I was gluten-free.  After I had started to repair I was a 4 in the IgA and a 15 on the D(do not remember the name of this number - 0-19 was neg, but that was 6 mos gluten-free).  So, life is better, as long as I avoid gluten and I guess oatmeal now.  Again thank you.


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Gluten Free 2012 - Dairy Free 2012 - Acid Reflux Diet 2013

Chronic Gastritis 2013 - Peptic Duodenitis 2013 - Hiatal Hernia 2013 - C-Diff 2013 - Endometriosis 2013 - Uterine Fibroids 2013

Patellar Tendonitis 2013 - Arthritis 2014 - NCGI 2014 - Erosive Esophagitis 2014 - Barretts 2014


I have a long list of physical ailments that were being grouped into age/gender by doctors.

Began Gluten Free and Casein Free after an Allergy Test trying to find answers to health problems that the doctors just were not answering well enough. Looking back through history, I have a lifetime of allergies and gastro issues.


Learn from yesterday, Live for today, and Hope for tomorrow. The important thing is not to stop questioning.

Albert Einstein

#12 kareng

 
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Posted 10 April 2013 - 07:09 AM

Yes, I just kept thinking it would be a bonus that if I had to give up all the foods I enjoyed so much, then there had to be a bonus to it, But I learned there were many other bonuses.  I feel better most of the time.  Joint pain is gone, except for yesterday, my hand hurt yesterday.  I feel energetic again, except this week.  Better mood.  No more itchy skin.  My hsuband has found a bonus in it.  And my dr. had written off many of my ailments as age and gender related.  WRONG.  I forced him to test me and it was negative, but the test was 6 months after I was gluten-free.  After I had started to repair I was a 4 in the IgA and a 15 on the D(do not remember the name of this number - 0-19 was neg, but that was 6 mos gluten-free).  So, life is better, as long as I avoid gluten and I guess oatmeal now.  Again thank you.

 

 

I see now you have other posts about your health, too.  I thought you were one of those annoying people who think a gluten-free diet is for weight loss!


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Thanksgiving dinners take 18 hours to prepare.  They are consumed in 12 minutes.  Half-times take 12 minutes.  This is not a coincidence.  - Emma Bombeck
 
dancing-turkey.gif
 
 
 
 

 


#13 surviormom

 
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Posted 10 April 2013 - 07:46 AM

I see now you have other posts about your health, too.  I thought you were one of those annoying people who think a gluten-free diet is for weight loss!

No, I could list all of my health issues but that would be annoying too.  I had numerous health issues as a child, but no one ever told me it was food related, then as an adult female, I was always diet conscious and ate mostly fruits and veggies, until children....pregnancy, major all day sickness, and I was told eat crackers.  I have had health issues since.  I gained 100 pounds, became a yoyo dieter and tried every diet known, mostly wheat based, and just about every doctor I have seen in the past 10 years has blown off my ailments as of a gender nature and age, no it was after I tried box dieting, again and failed and my doctor had told me it was my hormones, I said test me then we will fix it.  Hormone levels were to be envied by someone my age.  What I was lacking in were vitamins.  Seriously lacking in vitamins, D, B and iron was low.  I went home did more reading and called and said test me again, for gluten. They did, but I had already cut it out, by the time I had gotten in there and talked him to doing the test.  He did not want to, and where I live, you do not just call and get an appt.  You call and  month later you have an appt. unless you are annoying then its 2 or 3 months later you have an appt., for me it was 6 months before we actually got the test done.  But I read, a lot, and I went ahead and changed my diet,  just to see.  And wow.  Suddenly I felt better in the mornings, soon my knee did not hurt, before long, my hand and wrist quit hurting, Oops, anniversary and a birthday, AGHHH I felt awful, and then I had a DH rash, all over, thats when I learned that I had had one all along for years, since first pregnancy (would get it you know on my hiney and was too embarrassed to talk to anyone thought they were really ugly pimples- I know this because they are gone and do not come back any more).  Gluten gone for good, until last week, another birthday and my son said come on mom, you have to have a piece, just a small one.  hmmm.  Well next time I will make some gluten-free cupcakes for mom.  So, that is how I am here.  Yes, I was an annoying dieter, but I am also a sufferer of numerous problems all gluten related, so, I have to be gluten-free, but I wanted to see all it had done to me, disappear, I felt I deserved it to go away, at this point in time there is still about 40 pounds that I would like to see melt away.  Since I heard of people losing I just thought there must still be something I am eating that I should not be.  I now my nausea has just about passed.  Maybe time for a good apple.  I love apples.    Again, you have a great day.  No, I am not using this to lose weight, its to understand what is going on with my body and why it doesn't work like I thought it should.  I learn more every day.

 

 

I cannot seem to add a post, too much talking today, so this is what I have to add....yes I was very sick, only go to the bathroom once every couple of weeks, tmi.  Do not like sharing all my info.  But yes, up in the middle of the night when I would go, sweating hurting, painful.  Sick.  Constipated, most of the time.  Here is what I found on this very website.

 

A full 30% of celiac disease patients were in the obese range at the time of their diagnosis. Unfortunately many medical doctors still wont even consider testing overweight patients for celiac disease because they erronously believe that the disease can only occur in individuals who are underweight. This line of reasoning is outdated and incorrect, and is also very dangerous to those who happen to have celiac disease are are overweight—which is now known to be quite common.

 

Which is why it took 15 years for me to find relief.


Edited by surviormom, 10 April 2013 - 09:21 AM.

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Gluten Free 2012 - Dairy Free 2012 - Acid Reflux Diet 2013

Chronic Gastritis 2013 - Peptic Duodenitis 2013 - Hiatal Hernia 2013 - C-Diff 2013 - Endometriosis 2013 - Uterine Fibroids 2013

Patellar Tendonitis 2013 - Arthritis 2014 - NCGI 2014 - Erosive Esophagitis 2014 - Barretts 2014


I have a long list of physical ailments that were being grouped into age/gender by doctors.

Began Gluten Free and Casein Free after an Allergy Test trying to find answers to health problems that the doctors just were not answering well enough. Looking back through history, I have a lifetime of allergies and gastro issues.


Learn from yesterday, Live for today, and Hope for tomorrow. The important thing is not to stop questioning.

Albert Einstein

#14 foam

 
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Posted 10 April 2013 - 08:59 AM

If your still overweight I would say your not very sick YET because sick people from celiac/gluten intolerance are beyond skinny _always_.

 

But this concerns me "Just before 2am I woke up sweating and having horrible stomach pains and very very nauseated"

 

That's how it first started for me, once in a while... twice a while....... couple times a day... You'll loose the pounds alright if you keep on the gluten eventually once your gut is full of holes :), then you'll be desperate to gain weight like poor old mate Bryan in the leaky gut section. In any case if I were you or anyone on the planet I wouldn't eat gluten again.


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#15 sisterlynr

 
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Posted 10 April 2013 - 06:46 PM

If your still overweight I would say your not very sick YET because sick people from celiac/gluten intolerance are beyond skinny _always_.

 

But this concerns me "Just before 2am I woke up sweating and having horrible stomach pains and very very nauseated"

 

That's how it first started for me, once in a while... twice a while....... couple times a day... You'll loose the pounds alright if you keep on the gluten eventually once your gut is full of holes :), then you'll be desperate to gain weight like poor old mate Bryan in the leaky gut section. In any case if I were you or anyone on the planet I wouldn't eat gluten again.

 

 

Oh my . . . where did you get the idea that Celiac patients are always skinny?   

 

I know several friends, family members and myself that are not skinny but overweight.  The weight gain is attributed to the body not absorbing nutrients and going into starvation mode.  Your body then stores fat, to protect the vital organs.  I've read Celiac can cause diarrhea/constipation, weight gain/loss. . . on and on goes the list.  Not every patient has the same symptoms.

 

I have lost 35 lbs in the past 5 months since eating gluten free.  My iron, blood count and B12 have come back to a normal level and my body has also responding to releasing the fat that was stored.  I was always the patient that didn't eat 'what they weighed' and even my doctors didn't understand the why. . .   I was under doctors care for weight loss and it just didn't happen.  I'm am more than happy, along with my doctors to see my body respond to the lack of gluten.  

 

Most importantly for me, the skin rash (DH) is clearing up being gluten-free and my blood counts are back to normal.  I am ecstatic that I'm  experiencing weight loss!  


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Misdiagnosed DH symptoms for 30 years in the form of blisters on shoulders, scalp, sole of foot and lower back.
Type II Diabetes 1995  /   Fatty liver biopsy 2001  ~ Diagnosed with NH Lymphoma in 2007 metastasized to bones & Stage IV by 2008 Chemotherapy in 2008 ~ Breakout of rash from scalp to sole of feet. February 28, 2012 until present
Iron deficiency anemia - July of 2012  /  
Osteoarthritis. September 2012  2012 Rash was diagnosed as Eczema, Grover's Disease, Folliculitis per biopsies of the lesions. September 2012   Started Dapsone and Gluten-Free diet on October 20, 2012 ~ Diag DH 2012.  Not taking Dapsone due to sulfa reaction.  Biopsy in July 2013 indicates Lupus but my doctors do not agree on cause of rash for various reasons.  

 

~Lyn~





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