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Before You Knew It Was Gluten...?


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34 replies to this topic

#16 alex11602

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Posted 11 July 2012 - 12:36 PM

Big yes to question 1 and a huge huge no to question 2....I was a pastaholic! I made pasta literally every night for dinner and had saltines in the morning to settle my belly. Actually because of how upset my stomach would get gluten was one of the only things I ate because I thought plain pasta was light food to keep my stomach from hurting, oh how wrong I was...
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#17 ker0pi

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Posted 11 July 2012 - 01:59 PM

1) Yes
2) No, I have always felt like I was starving I ate every 2 to 3 hours and I found simple carbs, fruit and vegis just left me feeling empty and hungry. The only thing that would "last" and kill the constant nagging hunger was bread or gluten of some sort. I ate toast or a bagel every morning for breakfast with my eggs. Had whole wheat pasta nearly every night for dinner and then a piece of bread before bed to help me get to the morning without waking up in the middle of the night starving. I have always been "under weight." As a teenager I use to keep fig newtons next to my bed so I could eat 2 or 3 when I woke up in the middle of the night ravenously hungry. Gluten seemed to be the only way to control my blood sugar crashes. I've been gluten-free for 3 weeks and haven't experienced a blood sugar crash in 2 weeks, now I keep nuts handy for the hunger. I did not have the GI issues most people talk about and had no idea gluten was causing all my pain and joint inflammation.
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#18 mushroom

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Posted 11 July 2012 - 03:29 PM

1) Yes

2) Yes and no. Devoured bread and pizza, but had given up pasta and Mexican food (that turned out to be both wheat and corn :rolleyes: )
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

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Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
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#19 wheeleezdryver

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Posted 11 July 2012 - 04:56 PM

1. yes-- every spring since I was a teen, I would get a rash on my hands and arms... I've been gluten free for 2 years now, the only ime I've gotten that rash was the week of the 4th of July when I accidentally glutened myself.

2. no
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Becky (me)-35yo; hypothyroid 8yrs (symptoms at least 1 yr prior); Plantar Fasciitis (PF) (tendonitis in foot) 4 yrs; ovary & softball size cyst removed Feb 2008; Sleep Apnea 3yrs; Dec 2008- realized wheat affects hormones-- went semi- gluten-free (aka, gluten lite!). Interstitial Cystitis (IC, aka painful bladder syndrome) (self dx. controlled by diet- can't have acidic foods/ drinks). July 2010-- realized there was more going on, was going to do the sensitivity/ Celiac testing, decided it wasn't worth it! Am now truely learning to live the gluten- free lifestyle!
My DH-38 yo; born w/ Spastic cerebral palsy. legally blind, uses wheelchair. back surgery Aug 2007, has continued back troubles.

#20 Lisa

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Posted 11 July 2012 - 05:19 PM

I NEVER liked pizza, pasta or bread and frequently ordered a hot dog without the bun, nor beer.

I had severe symptoms for two months and was diagnosed through an endoscopy exam, with something I had never heard of before.

I can remember a few issues as a child.
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Gluten Free - August 15, 2004

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#21 ~**caselynn**~

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Posted 11 July 2012 - 05:23 PM

1. Yes definitely.

2. I went in spurts, but there was always a constant because I was a college kid, pizza and beer. Those two combined are no where near low gluten haha but I had laid off many other gluten filled items unknowingly, just because I felt so horrible I think.
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#22 cyberprof

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Posted 11 July 2012 - 06:30 PM

...
2) No, I have always felt like I was starving I ate every 2 to 3 hours and I found simple carbs, fruit and vegis just left me feeling empty and hungry. The only thing that would "last" and kill the constant nagging hunger was bread or gluten of some sort. I ate toast or a bagel every morning for breakfast with my eggs. Had whole wheat pasta nearly every night for dinner and then a piece of bread before bed to help me get to the morning without waking up in the middle of the night starving....



Wow, I've never heard anyone describe me exactly like that. My hubby never believed me that fruits and veggies would make me feel sick and light headed. Even eating them with fat and protein didn't help. Pasta and bread were necessary for me to feel "full". But I was not skinny. :huh:
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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

#23 ker0pi

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Posted 11 July 2012 - 06:46 PM

Wow, I've never heard anyone describe me exactly like that. My hubby never believed me that fruits and veggies would make me feel sick and light headed. Even eating them with fat and protein didn't help. Pasta and bread were necessary for me to feel "full". But I was not skinny. :huh:


My hubby SAW the effects fruits and vegis had on me, he would watch the crazy sugar crash after I had an apple and think it was insane. I would have to have bread to stabilize and not feel so light headed and dizzy. I resisted trying a gluten-free diet for so long because of how I felt if I didn't eat bread or pasta. I can't believe there's someone else out there like me either. I have always had people assume I was bulimic because of how much I would eat but stay so thin. It wasn't until all the joint pain started and I could no longer stand for more than 5 minutes at a time that I gained any weight, after 4 years of minimal activity I only gained 15 lbs and still ate like that, all high carbs. It's crazy what gluten can do to your body.
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#24 Roda

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Posted 11 July 2012 - 09:07 PM

#1 YES. I've battled with constipation issues since I was born. I had to have impactions removed several times prior to age 5. After that age we learned to manage it as best we could with diet(low dairy and more fiber). Since early 20's would still have the C but would get bloated up and look 10 months pregnant. Had two miscarriages and then found out I had hashimoto's in 2000. Was started on medications. Managed to go on and have two successful pregnancies last on born in 2004. Felt good while breastfeeding my son until Feb. 2006. Over the course of the next 2.5 years I had episodes of tachycardia, horrible reflux, unresolved anemia and not feeling well in general. My endo helped me get tested due to my research on anemia and hashimotos. A lot of what I read referenced celiac and it sounded so much like me. I think I have had at least a gluten intolerance since childhood and the birth of my second son is what really brought it to the forefront.

#2 NO. After my second son was born I had to go on an elimination diet because he had horrible reflux and would break out in rashes. So I had eliminated dairy, oats, rice and tree nuts. I ate a lot of fresh fruit, veggies and meat. I inadvertently went gluten light not knowing anything about celiac. I started reintroducing the eliminated foods when he was around 10 months old. I breastfed until he was 16 mo. old and when he was 14 months is when I started having issues.
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Me:
Celiac disease(positive blood work/biopsy- 10/2008), gluten free oat intolerent, Hashimoto's Thyroiditis/Disease, Raynaud's Disease


DS2(age 9):
celiac disease(positive IgA tTG, no biopsy- 11/2010)


DS1(age 13):
repeated negative bloodwork and negative EGD/biopsy. Started on a gluten free trial(8/2011). He has decided to stay gluten free due to all of the improvements he has experienced on the diet.


#25 bdw062590

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Posted 11 July 2012 - 09:31 PM

I guess this is a two-part question:

1. Once you figured out gluten was the problem and you'd had some time to look back, did you find yourself remembering symptoms and reactions from long, long ago, and suspect you'd had a gluten issue for far longer than you'd originally thought?

And,

2. Did you notice that perhaps you unconsciously preferred a lower-gluten diet (just weren't that "into" wheat-based carbs), as if your body was trying to protect you with a natural disinterest or aversion?

Just curious. I'm looking back and realizing there were subtle clues...


Not diagnosed yet but...

1. Looking back I connect a lot of problems with symptoms that didn't make sense until now.
2. I ate like a 260 pound overweight kid would eat, hot pockets, cheez-its, sammiches, doughnuts, cake, cookies, ice cream, massive amounts of energy drinks, soda.
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#26 txgal748

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Posted 15 July 2012 - 12:50 PM

1) Yes. Eczema as a child and neuro symptoms.

2) No. I love baked goods. Never had stomach problems.
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#27 Huggenkiss27

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Posted 16 July 2012 - 08:21 AM

1: Yes
2: Yes. After college (and being the sickest I have ever been) I moved to a small mountain town. I started dieting and lost 80 pounds and was only eating meat, veggies, and fruits. I realized that I felt amazing and continuted to eat that way. When I moved to Houston everyone always wanted to go out and I slowly got sicker and sicker until diagnosis about a year and a half after I moved. For the most part I've always preferred meats to carbs.
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#28 jeanzdyn

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Posted 16 July 2012 - 04:19 PM

I guess this is a two-part question:

1. Once you figured out gluten was the problem and you'd had some time to look back, did you find yourself remembering symptoms and reactions from long, long ago, and suspect you'd had a gluten issue for far longer than you'd originally thought?

And,

2. Did you notice that perhaps you unconsciously preferred a lower-gluten diet (just weren't that "into" wheat-based carbs), as if your body was trying to protect you with a natural disinterest or aversion?

Just curious. I'm looking back and realizing there were subtle clues...


1. OMG YES!! Actually, I have had gluten intolerance and/or celiac disease for over 30 years BEFORE being diagnosed at all. (by endoscopy and colonoscopy). My symptoms seemed widely varied and unrelated to each other. If I complained of fatigue I was told "everyone is tired", my gastro-intestinal symptoms were "irritable bowel syndrome" --I was to take Mylanta daily, and worst of all the itching that did not include a rash, breakout, or any visible signs was 'all in my head'. (and many many other symptoms, which apparently are attributed to celiac disease according to the helpful folks here at the celiac.com forum).

Going gluten free relieved the itching! That was the first and biggest, most noticable relief of any symptom and my main motivation for staying gluten free --no more horrible, burning itchy skin!

2. Yes again. I had lost interest in pasta almost entirely. I was no longer interested in pizza at all. It should be noted that I had not purchased bread in about 18 years, which does track back to a time of bad intestinal symptoms that led to some dietary changes. The real problem I had, pre-diagnosis, was that when I did have bread served to me at a restaurant or at someone else's house, I could not get enough bread and ate far too much, then felt ill later. But I did not make that connection at that time.

I would say that being diagnosed with celiac AND coming to this forum were huge revelations to me.
At the same time, when I was told of my diagnosis with celiac disease I was not really that surprised.
About 2 years before diagnosis I had experimented with cutting 'wheat' from my diet to relieve that itching skin.

As for subtle clues, I am really annoyed that no doctor in over 30 years even tried to figure out if any of my symptoms were connected in any way, or what they might mean. I was left to wander the Internet, reading medical websites, searching, always searching for some kind of answer. (I was not too far off, shortly before my diagnosis I had started researching Sjogrens Syndrome, which is not that different, just has some different symptoms.)

Also, I would tell you that I decided, on my own, to have a colonoscopy, as it is recommended for folks near my age. Also, I have had too many folks I know and love in treatment for various types of cancer --and at least colon cancer can be detected and cured if you are tested early enough. So, really my diagnosis was more or less accidental and would not have come about if I had not made this decision myself.

I would only add that I was never gravely ill, never hospitalized for any of my celiac symptoms. For that I am very thankful and I feel extremely sympathetic to those who have suffered severe illness and/or been hospitalized due to the celiac disease.
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What is food to one man may be fierce poison to others. —--Lucretius


I miss bread! But I love Kinnikinnick gluten free pizza crust.


Diagnosed celiac disease: November 2011 (biopsy and endoscopy)
other conditions: asthma, arthritis

#29 T.H.

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Posted 16 July 2012 - 08:13 PM

1. Yes.



2. Yes. Very soon after what I think of as 'symptoms' start, I ended up unconsciously changing my diet's focus. I started avoiding the sandwiches and pasta that made up most of my diet when I was young and tended to eat a lot of Asian rice based or coconut based dishes. I never noticed feeling better or worse; these just tasted better to me.

And then my hubby would complain that we didn't eat 'normal' American foods anymore, I'd start adding in more pasta and sandwiches, start catching flus and colds again, and start gravitating toward rice dishes as I recovered.

It wasn't 100%, just a general trend. For example, brownies were not avoided at all, LOL.
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T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive


#30 bigbird16

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Posted 17 July 2012 - 06:08 AM

1) Yes. Even as a kid I remember my stomach hurting after eating donuts and other baked goods.

2) No. My diet before was tons of bread and pasta. Comfort was a big bowl of garlicky, buttery pasta or a piece of toast with butter. Snacks at work were crackers and pretzels.
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Migraines, ataxia, peripheral neuropathy, anxiety, paranoia, joint pain, vivid nightmares, exhaustion & lethargy, brain fog, bloat, GI issues--all gone or significantly reduced since dietary changes were made

Gluten-free (Nov. 2008), dairy-free (June 2009), soy-free (Aug. 2009), all-grains-and-grasses-but-rice-free (Nov. 2011); double HLA-DQ7

"'Always remember, Bilbo, when your heart wants lifting, think of pleasant things.' 'Eggs, bacon, a good full pipe, my garden at twilight....'" (The Hobbit, animated movie, 1977)


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