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So Confused


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31 replies to this topic

#1 GlutenFreeAustinite

 
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Posted 29 April 2012 - 11:12 AM

So, i'm 18 years old, been gluten free for almost 2 years due to migraines. After consulting with my doctor, I've started eating gluten again, until the end of May, so that I can be blood tested for celiac disease, with a possible biopsy. I've been back on gluten for two days, and my symptoms are surprising. Normally when I eat even small amounts of gluten, I get sick (really bad stomachache for several days, bad migraine), and while I definitely don't feel healthy, my reaction is unusually mild considering I've eaten a TON of gluten comparatively speaking. (I'm supposed to eat one gluten-filled meal per day--so I've had flour tortillas, Oreos, battered chicken) Thus far, I've had a constant stomachache, a headache one evening, and constipation. While my stomach hurts, it doesn't feel like a typical gluten reaction, and I keep doubting myself. Am I really gluten intolerant/celiac/whatever? Have I subjected myself to two years of unnecessary change and irritation? I know the purpose of this gluten challenge is to figure out what's going on, but now I don't even know if I need to figure anything out!

Sorry for the rant, but I'm utterly frustrated. Yes, I know it's only been two days, but ugh!
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#2 IrishHeart

 
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Posted 29 April 2012 - 11:57 AM

I've been back on gluten for two days, and my symptoms are surprising. Normally when I eat even small amounts of gluten, I get sick (really bad stomachache for several days, bad migraine)

Thus far, I've had a constant stomachache, a headache one evening, and constipation. While my stomach hurts, it doesn't feel like a typical gluten reaction, and I keep doubting myself.


First of all, are your migraines gone off gluten? Then how was this "unnecessary change and irritation"?

Maybe you were expecting it to be more intense, but you admit readily that you have:

a constant stomachache
a headache
and constipation


Those aren't bad enough? Yikes! they sound pretty bad to me.
The point is--If you did not have a gluten problem, you would not have ANY symptoms.

I think you are still not feeling the cumulative effects just yet. It may well get worse. :unsure:

Also, one gluten item a day is not a lot of gluten.

It is my understanding that you need to eat a lot more than that for 3 months before testing.
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

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

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

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

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

"LTES"  Gem 2014

 

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


#3 GlutenFreeAustinite

 
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Posted 29 April 2012 - 12:22 PM

The migraines are gone, yes, but they don't appear to be a consistent symptom of glutening...the few times I have gotten into gluten, I haven't had one.

I do have a stomachache, but I typically have way, way, worse from much less gluten. That's what's odd--I'm definitely reacting, but it's much milder than normal.

I have been eating more than one gluten item per day--just last night, I had chicken with breading, breaded onion rings, and Oreos. Friday night I had flour tortillas. So I've been eating a TON. My thought is that I've shocked my system, and am not fully reacting yet because I've been overloaded.
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#4 IrishHeart

 
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Posted 29 April 2012 - 12:49 PM

Keep eating, give it a few days....I hope you can tolerate it. :unsure:
I am afraid of what's coming for you, to be honest.

Take probiotics to keep the bowels running. Constipation is no picnic.

I still think it takes more than a month on a gluten challenge, hon. Takes 3 months, I thought?

Again, if you did not have a gluten intolerance, you would have NO symptoms. See what I am saying?

Good luck and I hope it is not too rough for you.
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

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

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

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

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

"LTES"  Gem 2014

 

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


#5 GlutenFreeAustinite

 
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Posted 29 April 2012 - 01:02 PM

That's the plan....the reaction isn't fun now, but i have a feeling it will get worse.

Psyllium fiber helped with that today, so I'll keep taking it, and hope it gets better. In my book, it's better than the opposite, but I don't like it.

I'm not entirely sure. My doctor says the amount of time typically varies--anywhere from 4 weeks to three months.

That's what I was thinking too. I'd feel fine if I wasn't at the very least gluten intolerant.

Thanks!
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#6 IrishHeart

 
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Posted 29 April 2012 - 01:05 PM

That's the plan....the reaction isn't fun now, but i have a feeling it will get worse.

Psyllium fiber helped with that today, so I'll keep taking it, and hope it gets better. In my book, it's better than the opposite, but I don't like it.

I'm not entirely sure. My doctor says the amount of time typically varies--anywhere from 4 weeks to three months.

That's what I was thinking too. I'd feel fine if I wasn't at the very least gluten intolerant.

Thanks!


You bet, hon. I really feel bad that you're going through all this, but in the long run, DX or not, please....listen to your body. :)

I would hate to see your vicious migraines return. I had those intermittently for 30 years....and I would have just as soon blown my own head off to make that pain stop. Those are AWFUL.

:(
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

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

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

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

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

"LTES"  Gem 2014

 

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


#7 pain*in*my*gut

 
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Posted 29 April 2012 - 04:22 PM

The migraines are gone, yes, but they don't appear to be a consistent symptom of glutening...the few times I have gotten into gluten, I haven't had one.

I do have a stomachache, but I typically have way, way, worse from much less gluten. That's what's odd--I'm definitely reacting, but it's much milder than normal.

I have been eating more than one gluten item per day--just last night, I had chicken with breading, breaded onion rings, and Oreos. Friday night I had flour tortillas. So I've been eating a TON. My thought is that I've shocked my system, and am not fully reacting yet because I've been overloaded.



If I were you, I would try to eat more gluten foods for a true gluten challenge. Breading on fried foods does not have that much gluten. You need to eat the equivalent of 3-4 slices of bread EVERY DAY for at least 4-6 weeks ( sometimes longer) for the results to be valid.

I hope your challenge stays tolerable!
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Celiac DX 9/2011 ~ Gluten free ever since
Hashimoto's Thyroiditis 10/2011
Premature Ovarian Failure 11/2010
Rheumatoid Arthritis 10/2011
Sjogren's Disease 10/2011

"The best way out is always through" ~Robert Frost

#8 GlutenFreeAustinite

 
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Posted 29 April 2012 - 06:35 PM

I've been eating quite a bit...I'm trying not to shock my system too badly in the first three days. Like today, I ate pita chips and two yeast rolls. I'll start eating more true bread product this week.

I'm actually not too bad, and while I still have my stomachache, I can manage this for now.

One big question I've always wanted to ask....how much of a given gluten reaction can be attributed to not having eaten the stuff for a while? Like when I was vegetarian, I started adding back meat, but for a while, I couldn't eat too much of it because the meat upset my stomach. Does something similar happen with gluten?
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#9 nora_n

 
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Posted 30 April 2012 - 03:41 AM

I too get lots of symptoms when getting little gluten but not much when provoking with cookie or much gluten. Have heard it is like that with others too.

Ehen I had the gluten challenge, I then got the mouth blisters back, and migraines, then I had to double the thyroid meds and my weight started dropping off. I stayed tired or got worse (I was as tired when I got up as when I went to bed, and I had a really bad sleep)

After the gluten challenge and staying offf gluten, migraines disappeared, cold sores totally stopped, and after gluten-free for sevenmonths I woke up one morning and was not so awfully tired.

But, no immediate reactions back then.
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gluten-free since may 06 after neg. biopsy symptoms went away and DH symptoms which I had since 03 got gradually better.
daughter officially diagnosed celiac and casein intolerant.
non-DQ2 or DQ8. Maybe DQ1? Updated: Yes, double DQ5
Hypothyroid since 2000, thyroxine first started to work well 06 on a low-carb and gluten-free diet
Lost 20 kg after going gluten-free and weighing 53 kg now. neg. biopsy for DH. Found out afterwards from this forum that it should have been taken during an outbreak but it was taken two weeks after. vitaminD was 57 nmol/l in may08)

#10 ravenwoodglass

 
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Posted 30 April 2012 - 04:03 AM

I've been eating quite a bit...I'm trying not to shock my system too badly in the first three days. Like today, I ate pita chips and two yeast rolls. I'll start eating more true bread product this week.

I'm actually not too bad, and while I still have my stomachache, I can manage this for now.

One big question I've always wanted to ask....how much of a given gluten reaction can be attributed to not having eaten the stuff for a while? Like when I was vegetarian, I started adding back meat, but for a while, I couldn't eat too much of it because the meat upset my stomach. Does something similar happen with gluten?


If you don't have problems with gluten then adding it back into your diet is not going to cause a problem. It can take up to a week for the antibodies to build up and cause a definate reaction after we have been gluten free for a bit. You are starting to react already but the worst may still be to come. I hope you don't get too ill but if you do get severely ill do contact your doctor and let him/her know. Some of us are not able to do a full challenge.
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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)

#11 Greyhound

 
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Posted 30 April 2012 - 04:17 AM

It is my understanding that you need to eat a lot more than that for 3 months before testing.

THREE MONTHS??! :o I was told it should be six weeks. Now I'm definitely not going on gluten just for a biopsy.
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Blood test results normal. I refuse to eat gluten for a biopsy. Gluten-free since 15th April. Things slowly improving :-)

#12 IrishHeart

 
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Posted 30 April 2012 - 04:19 AM

The last I heard it was 3 months.

Let me verify that with the Mod who posted that info. BRB!

.............

okay, some Celiac specialists say 2 months, but the 3 months gluten challenge is best for the blood work.
(The University of Chicago Celiac Disease Center)

If the blood work is 3 months, I would think the biopsy is the same.

Maybe this is wrong?

If your symptoms become impossible and life-threatening, you should stop it and tell the doctor.
He should be able to DX you from symptoms alone.

(I would not make it past 2 days back on gluten myself. The neurological symptoms alone would be horrid.) I think the challenge for biopsy is barbaric, IMHO
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

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

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

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

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

"LTES"  Gem 2014

 

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


#13 IrishHeart

 
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Posted 30 April 2012 - 04:39 AM

THREE MONTHS??! :o I was told it should be six weeks. Now I'm definitely not going on gluten just for a biopsy.



Did your doctor tell you this?
Maybe your doctor has a different opinion.
Do what YOU think is best.
  • 0

"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


#14 Greyhound

 
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Posted 30 April 2012 - 07:20 AM

If your symptoms become impossible and life-threatening, you should stop it and tell the doctor.
He should be able to DX you from symptoms alone.

(I would not make it past 2 days back on gluten myself. The neurological symptoms alone would be horrid.) I think the challenge for biopsy is barbaric, IMHO

They're not life threatening health-wise, but they threaten my job (stupid mistakes and bad customer service from brain fog) and are damaging my studies (I'm studying for a degree with the Open University).

Did your doctor tell you this?
Maybe your doctor has a different opinion.
Do what YOU think is best.

It's what I've heard in several places but I can't remember where now. I do NOT want to eat a single bit more gluten but every time I post on the Coeliac UK page on Facebook for advice on this or that, people just keep saying 'you should get diagnosed. You MUST eat gluten. It's worth it in the long run. A few more weeks wouldn't hurt'.

I know I need to see a doctor and I know that getting a proper diagnosis (if it is coeliac disease) requires a biopsy, but it's painful to eat gluten and I simply cannot do it any more. I haven't the strength. People say 'if it's been years then a few weeks wouldn't make any difference' but imagine you'd been locked up indefinitely for several years and someone suddenly came along and said 'oh, you can go now' and then, finally, you had a week of freedom and then someone came along and said 'would you mind going back to being locked up in your cell for three more months?'. Suddenly your tolerance of that situation would be much much lower, even though you'd endured years of it already. It hurts so much, I can barely stay awake, I can never get any refreshed sleep (which can get very scary), I get depressed, and I just can't do it.
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Blood test results normal. I refuse to eat gluten for a biopsy. Gluten-free since 15th April. Things slowly improving :-)

#15 IrishHeart

 
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Posted 30 April 2012 - 10:47 AM

They're not life threatening health-wise, but they threaten my job (stupid mistakes and bad customer service from brain fog) and are damaging my studies (I'm studying for a degree with the Open University).
It hurts so much, I can barely stay awake, I can never get any refreshed sleep (which can get very scary), I get depressed, and I just can't do it.



That sounds life-threatening to me! When I was gluten-headed, I could not drive anymore. I was impaired neurologically. Imagine if I hurt someone or myself?


Hon, it sure sounds like you need to stay off gluten.

What would be the advantage to having a "firm" diagnosis?
That is what motivates most people to pursue one, no matter how much it makes them ill.
  • 0

"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





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