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MallysMama

How Can You Tell The Difference?

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I think that (although many of us have common issues) everyone's specific reaction to gluten is different. It's a matter of really knowing your body and knowing the signs that something has gone wrong. It's not neccisarrily D that alerts us, nor does it happen right away for everybody. It was mentioned earlier that some people don't have symptoms and I think that may be the most dangerous situation, because it doesn't mean that damage isn't happening. Over time I have gone from knowing my general symptoms to knowing exactly what is going to happen if I'm glutened. I know that if I'm glutened at dinner, that by about bedtime (although I'm not in pain yet) I'll probably get kicked out of bed and into the guest bedroom because my very loud stomach rumblings and night sweats will be keeping my hubby awake. At about 3a.m. I'll wake up and be wide awake. I'll lay there for hours while the depression sets in. By morning I'll have myself convenced that I'm terrible person, that I have wasted my life, and that I deserve nothing good in my life (hence the depression). Should this happen on a weekend, the only thing that will finally drag me out of my hole at about 10:00a.m. is sever D cramps. I'll spend most of the day doing that, and bloating up, and then for the next week I'll have C and bloating. I'm unable to concentrate or get a good nights sleep (although I'm exhausted) during that time either. Being glutened is the only thing that gives me that kind of reaction. I think when it comes to celiac disease symptoms, it's everything together makes it a clear picture. Plus the severity of the symptoms. We all have off days when we didn't get enough sleep, can't concentrate, or just feel grumpy. I think a gluten reaction is different though. It lasts for days, its always a group of symptoms all at once, and the emotional symptoms are too sever to attribute to just a bad day.

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"No symptoms"

Mallysmama, what you have been describing in your later posts in this thread don't sound like "no symptoms" to me! They sound exactly like symptoms of a very mild constant glutening. And if you have indeed been eating cereal that has malt flavoring, and not being that concerned about cross contamination etc., then you have been constantly glutening yourself all the time.

How would you find out you ask? Well, start being more careful, and make sure that you really are 100% gluten free, for... let's say two months. I bet you would discover that actually, it's possible to be less tired and "lazy", and have strange foggy spells at work...

About what I said about it not being the gluten... apart from the endorphin receptor thingy, which was a good correction, thank you for that. (Do you have an article/reference somewhere, I'd love to read it if you have?) My point was that since it's the antibodies that attack the intestine, the severity of symptoms, and the severity of damage, too, depends on how eager a persons body is to produce those antibodies, right? A person who doesn't react by producing intestine-eating antibodies to gluten can eat gluten all they want and they might get brain fog, but they won't damage their intestine.

Just for the record - I wasn't advising anyone to go off their gluten free diets! I do think it's important to understand this disease beyond a simple "gluten is poison" slogan...

Pauliina

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Paulina--I think that your point was very well taken. I also agree with what you wrote in an earlier post about the Celiac possibly waning in the teens and 20's. That is what happened with me. After always having a sensitive stomach with frequent D after eating as a child, I was fine in my teens and 20's. It wasn't until age 29, after major surgery that I began to get sick again.


Patti

"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

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I definatly think that celiac disease can go through phases during your lifetime. Not neccisarrily just improving during teens and 20s. I was fine as a child. I started showing symptoms in my teens, then improved for 5 years or so, and after a surgery and some lifestyle changes became very sensitive when I was about 23. I have never heard though....does anybody know if celiac disease is degenerative? What do we have to expect over the next 10, 20, 30 years? That may be a stupid question....I've never heard though...

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Oops Pauliina--Just realized I quoted you on accident in my post! I'll get rid of that b/c I wasn't thinking you were telling people to go off the diet, but maybe it seemed that way since I accidentally had your post there? I don't know...either way, I didn't think you wre suggesting that. :)


~~~~~~~

Jen

Indianapolis, IN

gluten-free since Feb 2005

dairy-free

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I definatly think that celiac disease can go through phases during your lifetime. Not neccisarrily just improving during teens and 20s. I was fine as a child. I started showing symptoms in my teens, then improved for 5 years or so, and after a surgery and some lifestyle changes became very sensitive when I was about 23. I have never heard though....does anybody know if celiac disease is degenerative? What do we have to expect over the next 10, 20, 30 years? That may be a stupid question....I've never heard though...

Celiac disease is only degenerative if you don't follow a gluten-free diet, because you do more damage to yourself continuously. If you don't eat gluten, you don't damage your body, and will be healthy.


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

------------------------------------------------------------------------------------------------------------------

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I'll spend most of the day doing that, and bloating up, and then for the next week I'll have C and bloating. I'm unable to concentrate or get a good nights sleep (although I'm exhausted) during that time either.

That's very interesting. I felt really rubbish on Monday - v sore stomach, violent headache, and had to come home from work. I had had a headache the night before as well. I thought I may have been glutened the evening before (not 100% sure as it must have been by cc and, being fairly new to the diet, am inexperienced in recognising when I'm glutened). but the whole of the week I've had C and been sooo bloated. I thought it must be something else as I didn't realise being glutened could take so long to pass off. Is this other people's experience too?

BTW, thanks mallysmama for being so honest in asking your questions. I'm new to celiac disease myself (or rather have only recently been dx) so it's difficult for me to answer your qus - I hope you get the answers you need :)


Susie from Coventry, UK

IBS & GERD 2000

Screened for coeliac disease as sister has it - negative blood test

Nov 2005 positive blood tests

January 2006 dx by biopsy

gluten-free and dairy lite since then

I am also neutropenic, anaemic and have hypothyroidism

Feb 08: free protein S deficiency; candida overgrowth; adrenal exhaustion

'My grace is enough; it's all you need. My strength comes into its own in your weakness.' 2 Corinthians 12

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Yes, this is my experience. I get D or loose BM's for a day and painful stomach, heartburn and sometimes nausea. I then will have C for a week or more from being gluttened. That is the worst part. If you get gluttened and then you have C for a week or two afterwards. If it was over in 24 hours that would be great.

For me the brain fog consists of hearing my children talk to me, but I am in a daze or spaced out. It is hard for me to answer. I feel distant. Plus I usually end up depressed. I can just wake up and be a completely different person then I was the day before. It is really aweful. I have bone pain, especially in my legs after being gluttened. I also don't sleep well afterwards which i don't understand, but i guess maybe it is because my body is reacting to the gluten. I guess when you have the flu or something you usually don't sleep well. Maybe it is the same thing sort of.

Monica

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I also improved greatly through my teens. As a child, I had severe constipation (impacted several times), would black out frequently and had unexplained anemia.

As a teenager, health greatly improved, absolutely no problems through high school and early working years.

Early 20's, I declined greatly and have been declining steadily ever since! (Maybe it's just getting old, though......) :P:lol:

Hugs.

Karen


Karen

positive bloodwork, positive biopsy

Celiac, collagenous colitis, hypothyroidism

endometriosis (at age 20)

spinal stenosis (early 20's)

Biopsy August 2006 confirmed complete villous atrophy despite being gluten-free for years and bloodwork within range showing compliance with diet. Doctor has confirmed diagnosis of Refractory Celiac Sprue.

Endoscopy also showed numerous stomach ulcers, have started taking Losec.

Mother to Eileen 13 yrs

Rhiannon 8 yrs

Daniel & Connor 6 yr twin boys......

"Joyfulness keeps the heart and face young. A good laugh makes us better friends with ourselves and everybody around us."

Orison Swett Marden

Laughter is the shortest distance between two people.

-- Victor Borge

"An optimist laughs to forget. A pessimist forgets to laugh."

Tom Nansbury

"Doctor to patient: I have good news and bad news. The good news is that you are not a hypochondriac."

Unknown

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....

Mr J - explain more about how you were diagnosed with the vagus nerver problem. I've never even heard of that part of my stomach. How did you know that was happening to you?

hello MallysMama, it was far from obvious what was happening to me - i just couldn't seem to digest. The gastroparesis diagnosis was circumstantial observation by my docs, i tested normal via the barium test - real-time x-ray of barium liquid drink as it leaves stomach - inability to leave in timely manner is the gastroparesis diagnosis - but a lot of gastroparesis sufferers can empty low nutrient liquids normally anyway, but struggle with meals so its not a good test and the better tests were not available to me. i think i remember that the gastro speciaolist who went into my stomach with the endoscope and observed motility (stomach churning) reported it as "not great". I responded positively to the gastroparesis medicine reglan (got my stomach churning nicely, but couldn't tolerate the side effects). Its well understood that the stomach churning/emptying is controlled by the vagus nerve - some gastroparesis sufferers were inflicted by botched stomach surgery which accidentally severed this nerve. However most like me are deemed idiopathic - medical terminology for not got a clue. except its no longer ideopathic to me at least - i cant say for sure that gluten is the sole culprit, but from my experiences its certainly a major player.

in contrast my osteoperosis diagnosis (scanned twice by 2 different machines) and my peripheral neuropathy (shown via delayed muscle reaction to electrical stimulus) are definitive.

i'm just grateful that those last 2 conditions don't stop me from enjoying my favourite hobby. the neuropathy hasn't gone as far as removing the strength in the grip of my fingers and toes, so i can still hang on to my surfboard and keep feet planted on the deck. reactions at elbows, forearms and knees are normal thus allowing me to balance. its at my extremities that things go wrong, so i tend to drop cups and my handwriting is awful (never was great) but i can live with that

cheers,

Mr J

PS my last paragraph descibes my everyday gluten-free condition as opposed to the temporary fallout from a glutening


age 47

enterolab tests

HLA-DQB1*0602, 0604 - sensetivity genes

Antigliadin IgA and Transglutaminase igA positive

Casein IgA positive

primary problem - gastroparesis - paralysis of the stomach

under control with the right drugs

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