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Keep Going Gluten Free Or Stop?


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#1 Tiredsean

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Posted 22 February 2013 - 05:28 AM

It's been 1 1/2 months of me going gluten free trying to find the reason why my muscles are in pain and tense.Also other symptoms like cold hand and feet,light sensativity sometimes,Dizzyness etc.All symptoms are still present which leads me to believe they aren't gluten related or dairy since I stopped that to.Im now leaning towards nightshades (solanine poisoning) ,egg ,chicken and caffeine.Caffeine makes everything worse instantly which leads me to believe it also may be a caffeine intoerance/sensativity.When I pop antihistamines my symptoms drop off except I get tires thoughts???
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#2 IrishHeart

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Posted 22 February 2013 - 06:30 AM

Have you had your thyroid checked? Could cause the same symptoms (cold, fatigue, muscle aches) Just a suggestion.


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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

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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.
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#3 Tiredsean

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Posted 22 February 2013 - 06:50 AM

Yes I had tsh free t3 and t4 checked all well within normal.I thought the same thing.Most of my symptoms follow hypothyroid except weight loss which is mainly my massive diet change going gluten free/dairy free/ junk food free.The next item after that flows with all my symptoms is a food sensativity given all symptoms listed above plus sinus problems.My muscles used to be always tense not sore,since I dropped my coffee intake to one super small cup a day they now ache but aren't tense.This is why I'm now leading to caffeine,or egg/nightshades .Ive been echo scanned entire abdomen and kidneys, mris,thyroid tests,diabetes, X-rays of lungs,kidney blood tests for everything and more snd more they can't find anything.Last option I have once I weed out food is Lyme disease which in Quebec is possible.Nightshades is a 90 day trial however to flush out solanine poisoning so it will be a long run.I have a Celiac question :if I lost huge sums of weight is this a sign I am celiac or is it normal no gluten = weightloss
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#4 IrishHeart

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Posted 22 February 2013 - 08:35 AM

Some people do lose a lot of weight from unDxed celiac, yet some do not.

And yes, many people can lose weight initially when they give up breads. pastas, wheat-filled goodies, but once the gut starts absorbing nutrients again, weight gain can occur.


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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 

"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 nvsmom

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Posted 22 February 2013 - 08:43 AM

I think you might as well get tested for Lyme while continuing the gluten-free diet. In Alberta, those Lyme tests can take weeks to get back, and I think you should give the diet a bunch of more time. 

 

I have/had pretty severe joint pain on and off for years; it would flare up badly, last a few months and then hang around as stiffness. It would be bad enough that i could not open bottles, holding toothbrushes was difficult, I and couldn't get my left arm above my head. After eating gluten-free 6 months my joint pain is going away. I have some stiffness and weakness left but the pain is gone.  It took a long time for the gluten-free diet to have any affect for me (I'm assuming it was the diet anyways-  lol).

 

As for your question, it is not uncommon to lose weight on the gluten-free diet. My theory is that it's weight from inflammation, based on where I lost my weight. In my first two months gluten-free I lost over 15 lbs which is really bizarre because I was eating more junk food, and more food overall, at the time. For the last few weeks I have been accidently glutening myself with chocolates that I thought were gluten-free (savouring one chocolate every few days). I wasn't having a severe GI reaction so i didn't really clue in (thought it was a flu) but now I am bloated and puffy looking again; I look like I gained 15 lbs in the past 3 weeks.... I think it's inflammation.

 

Best wishes to you.


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#6 IrishHeart

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Posted 22 February 2013 - 08:53 AM

I agree. I never like to say how long it has taken me to get relief from the excruciating muscle and bone/joint pain I have from celiac because

I know I am not the norm. Most people see significant improvement in weeks or even a few months. I'm 2 years post-DX and still struggle, and I have had intense physical therapy and massages all this time. 

 

I was tested for Lyme 4 times (all negative) before an infectious disease specialist finally said he felt this was not a contributing factor to the pain I had, but

they kept testing me anyway. You should at least rule it out.

 

Symptom abatement when taking antihistamines could mean you have some food  allergies, different from a gluten intolerance. 

 

Everyone is different and you may just need to be patient to see more resolution of symptoms. Hang in there!


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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 

"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 Tiredsean

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Posted 22 February 2013 - 10:38 AM

Yeah I'm gonna call my doc and get tested for lyme.Then ill back off caffeine and nightshades and still maintain my gluten free diet.I won't cut eggs yet simply because I actually need to eat.I checked fibro but where I hurt doesn't reflect fibro points.I do get real muscle knots in my upper back and pain,buttocks and facial muscles,outter shoulders all at random times etc, the light sensativity and cold hands and feet are also random but usually sametime as pain.What a pain in the butt this food sensativity is geez!
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#8 frieze

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Posted 23 February 2013 - 09:15 AM

Yeah I'm gonna call my doc and get tested for lyme.Then ill back off caffeine and nightshades and still maintain my gluten free diet.I won't cut eggs yet simply because I actually need to eat.I checked fibro but where I hurt doesn't reflect fibro points.I do get real muscle knots in my upper back and pain,buttocks and facial muscles,outter shoulders all at random times etc, the light sensativity and cold hands and feet are also random but usually sametime as pain.What a pain in the butt this food sensativity is geez!

have you had vit/min levels checked??


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#9 Tiredsean

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Posted 24 February 2013 - 04:59 AM

Yes iron,b12,calcium,magnesium,folate acid etc s slew of others all well within normal snd b12 off the charts because I supplenented which I stopped,d 3 as well high
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#10 frieze

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Posted 24 February 2013 - 05:15 AM

Yes iron,b12,calcium,magnesium,folate acid etc s slew of others all well within normal snd b12 off the charts because I supplenented which I stopped,d 3 as well high

Did you stop the B12 for at least 4/5 days before the test?  you want the test done on a "steady state" level.  What were the numbers?


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#11 Tiredsean

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Posted 24 February 2013 - 02:48 PM

Range 179-660 I was at 874 .I didn't stop dosing before the test though.However if let's just say my B12 would have been low without dosing I'd understand feeling like crap.But since they were so high and I still felt like crap I guess it isn't b12.What annoys me the most about whats going on is the irregularity of it!! Sometimes I feel almost totally normal ,muscles,sinuses,stomach all just fine.Then it will either creep into me like stiff neck,soreish back,dizzy,sensative to light,sinus pain,post nasal drip,soreish face ,and fatgue.Then over the next few days buttock pain,leg pain sometimes,muscle tension etc even itchy anus(which I've been reading is a symptom of food sensativity god knows why) and tender under left rib. 2-3 days later sometimes a week I back off eat chicken ,fish,veggies,water,fruit especially babanas and my body weeds out one symptom at a time until I'm normal again. Or after two major hits ill get fatigued almost instantly,go to bed wake up anxious,throbbing sinuses,upper teeth hurt,shortness of breath,super cold hands and feet,tremble a bit, burning muscles in back,legs ,heart palpatations etc.and yet again takes inside a week to reset my body.My BM usually smell god awful after these episodes,during I'm usually constipated ,its very tiring being in the dark.What bothers me is eating fresh all the time is causing me significant weight loss.
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#12 frieze

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Posted 24 February 2013 - 06:14 PM

Range 179-660 I was at 874 .I didn't stop dosing before the test though.However if let's just say my B12 would have been low without dosing I'd understand feeling like crap.But since they were so high and I still felt like crap I guess it isn't b12.What annoys me the most about whats going on is the irregularity of it!! Sometimes I feel almost totally normal ,muscles,sinuses,stomach all just fine.Then it will either creep into me like stiff neck,soreish back,dizzy,sensative to light,sinus pain,post nasal drip,soreish face ,and fatgue.Then over the next few days buttock pain,leg pain sometimes,muscle tension etc even itchy anus(which I've been reading is a symptom of food sensativity god knows why) and tender under left rib. 2-3 days later sometimes a week I back off eat chicken ,fish,veggies,water,fruit especially babanas and my body weeds out one symptom at a time until I'm normal again. Or after two major hits ill get fatigued almost instantly,go to bed wake up anxious,throbbing sinuses,upper teeth hurt,shortness of breath,super cold hands and feet,tremble a bit, burning muscles in back,legs ,heart palpatations etc.and yet again takes inside a week to reset my body.My BM usually smell god awful after these episodes,during I'm usually constipated ,its very tiring being in the dark.What bothers me is eating fresh all the time is causing me significant weight loss.

874 is not all that high, and was not a real measure of your 'steady state'.  keep up the same or higher dose for a while longer.  Your bowel issues sound like something is "getting you"  ?another sensitivity, hidden gluten?


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#13 shadowicewolf

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Posted 24 February 2013 - 07:04 PM

A lack of calcium can cause charlie horse type cramps in the body :unsure:


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#14 foam

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Posted 24 February 2013 - 08:10 PM

I need to have B12 levels around 1000 to feel OK. But the level itself isn't that important, If I drop from 1000 to 900 I feel just as rubbish as if I drop from 200 to 100.. In any case I like to hold it steady at 1000 because that's what works.

 

Vit D, you should try hold that at 120-150 but certainly over 100.

 

I used to have knees so sore I couldn't walk properly. They have been 100% perfect since I stopped eating gluten and got my Vitamin levels sorted although in the end the major problem for me is yeast not gluten as such.. but its hard to have a grain without yeast on it so I don't eat grains at all now.


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#15 pricklypear1971

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Posted 24 February 2013 - 09:02 PM

Antihistamines also suppress the immune system - so if you are having autoimmune symptoms it could relieve some of them.

Last winter I was glutened one two many times and went into a tailspin, plus juniper/cedar season...and after taking antihistimes for a few days I could feel the difference. I had to continue very low doses (half adult dose every other day) for a few months.

This year, no gluten and can clearly tell the difference between autoimmune symptoms and allergies. And oh boy is the juniper BAD this year. Ugh!

That's the long explanation if why you may feel better on antihistimines. It may not be a food allergy, it may be dampening your autoimmune reaction.

Or it may be a food or other allergy.

It's hard to tell, usually. Takes time, I think.
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