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Electra

Yet Another Sign Of Celiac How Can I Have So Many?

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Ok I just read this and I'm in in shock yet again. Not only have I had about EVERY Celiac symptom in the last few years, but I just came accross this info. I have had 2 nasal surgeries and still have major sinus problems and polyp problems that I have my 3rd nasal surgery scheduled for. Man this is unbelievable!!

"Upper respiratory complaints such as sinusitis, allergies, asthma, bronchitis"

http://www.labspec.co.za/coeliac/PAGE2.HTM

Why do the darn results take so long UG??


~~Angie~~

DX'd With Narcolepsy In 1995

Dx'ed With Celiac On 12-18-06

Positive Biopsy On 2-1-07

DX'd With Pernicious Anemia 4-24-07

Daughter Has DH, so I suspect she also has Celiac!!

"If Alcoholism was Celiac Disease they would make us drink ourselves into kidney failure before they would admit we had the disease"

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Because doctors can't think outside of the gluten box.


Rusla

Asthma-1969

wheat/ dairy allergies, lactose/casein intolerance-1980

Multiple food, environmental allergies

allergic to all antibiotics except sulpha

Rheumitoid arthritis,Migraine headaches,TMJ- 1975

fibromyalgia-1995

egg allergy-1997

msg allergy,gall bladder surgery-1972

Skin Biopsy positive DH-Dec.1 2005, confirmed celiac disease

gluten-free totally since Nov. 28, 2005

Hashimoto's Hypothyroidism- 2005

Pernicious Anemia 1999 (still anemic on and off.)

Osteoporosis Aug. 2006

Creative people need maids.

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Inflammation causes swelling. Swelling causes polyps. So that could be your problem, however heed this warning...

I had my second sinus surgery in two months today. The sinuses in the middle of the brain. They thought it was filled with polyps - it was filled with a solid, fungus that was gelatinous (sp). I think I may have celiac, but that just made it easy for a fungal infection to set in (immune system compromised). It took 2 surgeries, several trips to the ER, Lumbar Punctures, and 10 specialists to believe me that when I ate sugar, my brain swelled. Lovely, eh?

Make sure they culture the crap no matter how little (I haven't eaten sugar for weeks but ate some last night - so they could see)!!!!!! The first ENT refused to culture! Said he would find nothing but thickened tissue. I begged him - he told me I was crazy when I suggested candida or some type of fungus. I was having all kinds of weird symptoms like immune deficiencies, he still wouldn't. Of course it got 10 times worse because they put me on 5 antibiotics and steroids because it kept getting worse. All that helped the fungus. Now it was ten times worse than before the first surgery, I am hoping that I will recover.

One note: fungus can not be destinguished through a CT Scan or MRI - it looks like infection or polyps or debry. They can not usually culture from drainage - they have to go in and pull some out. I think the first ENT saw it, pulled it out and thought it was snot or something. This University ENT who gets sent weird cases, knew what it was and is culturing to find out what kind.


Chronic Ear Infections

Chronic Tooth/Jaw Infections

Chronic Sinus Infections

Recent Sinus Surgeries

New Migraines

New Occipital Neuralgia

New SUPER HIGH ANA

New Vitamin D deficiency

New High Calcium - hyperparathyroidism?

Recent Sugar & Wheat Intolerance - Facial Flushing and Headache

Lyme Negative

12/06 Tested (-) for Celiac after 2 - 3 months Gluten Free

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Guest cassidy

I felt the same way. I had so many symptoms and all those years I was told it was all in my head. I had surgery for reflux when I was 10 - I have a scar from my breastbone to my belly button. I only have reflux when I eat gluten. If only they had figured it out back then I could have been spared that surgery.

I just can't believe how many parts of the body celiac can affect. It was nice to go gluten-free and have all my symptoms disappear. If anyone had told me if I stopped eating an invisible, tasteless speck of food I would feel amazing, I don't think I would have believed it.

I always try to educate people when I can. If I can help one person get diagnosed and not suffer as long as I did, then at least I'm trying to make things right.

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Hmmmmm.... That is interesting... For about 2 years now I have had chroinc sinus infections. I have been on mega antibiotics and nothing every helps I have just had to live with it! I never thought sinus problems could b a sign of celiac though... I wonder if this will improve when I am on the diet for a while?

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I'm shocked at all of the symptoms I've had all these years too. I just hope all of my Chronic Fatigue Syndrome symptoms are related ...

About the sinuses ... I have never been able to get a good breath through my nose. Anyone else ?

Marcia


Jan 1990 - Dx CFS/ME/FM (URI's, Ataxia, myoclonus, orthostatic hypotension, insomnia, brain fog, swollen lymph nodes, sore throat... ) Completely Disabled (housebound and bedridden at times)

2004 - Digestive pain all the time.

May 2004 - Hiatal hernia, erosive gastritis, gastroparesis (endoscopy)

August 2004 - Colon polyps, diverticulitus, internal hemorrhoids (colonoscopy)

No relief from Nexium, Prilosec, Protonix, Zelnorm, Miralax, Imodium, Lomotil ...

July 2005 - GP recommended WFDFSFEFCF + vegan (Also, anything that hurts free)

Immediately stopped needing naps and digestive pain reduced.

Sept 2005 - GFDFCFSFEF + chemical free - Immediately stopped feeling jittery / buzzing and digestive issues were much better.

June 2006 - Dx B12 and iron deficient. Started B12 injections and using cast iron pan.

August 2006 - MYOCLONUS GONE. (off Klonopin)

September 2006 - ATAXIA, INSOMNIA and Feeling like the floor was moving under my feet gone.

June 19, 2007 - Positive DQ2, Dx Celiac

October 2007 - Sleeping like a baby, waking up with energy, but still having fatigue/stamina issues

Nov 2007 - Started Paleo diet for chronic hypoglycemia

April 2008 - GTT normal. I'm no longer hypoglycemic. Started Low oxalate diet for kidney stones.

May 1, 2008 - Began salt loading for OI/NMH - noticed immediately muscle weakness was gone. I was sodium deficient but my labs don't reflect it. Still working on OI and PEM.

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OMG, Marcia -- I have so many of your symptoms along with those of other people on this board. I have fibromyalgia, horrific allergies, B12 deficiency, recently diagnosed osteoporosis and vitamin deficiencies, and really really bad low blood sugar. My glucose fell to 28 mg during the glucose tolerance test. Tell me PLEASE that your blood sugar has improved on the gluten-free program! I'm so afraid to remove gluten because I can't touch brown rice and other foods that are high in carbs. Sigrid

[quot ates

ame='marciab' date='Dec 9 2006, 07:06 PM' post='244422']

I'm shocked at all of the symptoms I've had all these years too. I just hope all of my Chronic Fatigue Syndrome symptoms are related ...

About the sinuses ... I have never been able to get a good breath through my nose. Anyone else ?

Marcia

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Actually, I'm not sure what is up with my blood sugar levels right now. I am currently in the process of figuring out when my blood sugar level is causing symptoms. And just what and how much to eat to correct it.

I never realized this could be why my vision gets fuzzy after eating sweets until this week. :unsure:

ALSO, I am menopausal now and having waves and waves of hot flashes, so my body is in repair :)

Hope your blood sugar levels get better on the diet. There are plenty of other carbs to chose from. Have you tried quinoa, buckwheat or millet ? I use them instead of rice all of the time.

Marcia


Jan 1990 - Dx CFS/ME/FM (URI's, Ataxia, myoclonus, orthostatic hypotension, insomnia, brain fog, swollen lymph nodes, sore throat... ) Completely Disabled (housebound and bedridden at times)

2004 - Digestive pain all the time.

May 2004 - Hiatal hernia, erosive gastritis, gastroparesis (endoscopy)

August 2004 - Colon polyps, diverticulitus, internal hemorrhoids (colonoscopy)

No relief from Nexium, Prilosec, Protonix, Zelnorm, Miralax, Imodium, Lomotil ...

July 2005 - GP recommended WFDFSFEFCF + vegan (Also, anything that hurts free)

Immediately stopped needing naps and digestive pain reduced.

Sept 2005 - GFDFCFSFEF + chemical free - Immediately stopped feeling jittery / buzzing and digestive issues were much better.

June 2006 - Dx B12 and iron deficient. Started B12 injections and using cast iron pan.

August 2006 - MYOCLONUS GONE. (off Klonopin)

September 2006 - ATAXIA, INSOMNIA and Feeling like the floor was moving under my feet gone.

June 19, 2007 - Positive DQ2, Dx Celiac

October 2007 - Sleeping like a baby, waking up with energy, but still having fatigue/stamina issues

Nov 2007 - Started Paleo diet for chronic hypoglycemia

April 2008 - GTT normal. I'm no longer hypoglycemic. Started Low oxalate diet for kidney stones.

May 1, 2008 - Began salt loading for OI/NMH - noticed immediately muscle weakness was gone. I was sodium deficient but my labs don't reflect it. Still working on OI and PEM.

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Actually, I'm not sure what is up with my blood sugar levels right now. I am currently in the process of figuring out when my blood sugar level is causing symptoms. And just what and how much to eat to correct it.

I never realized this could be why my vision gets fuzzy after eating sweets until this week. :unsure:

ALSO, I am menopausal now and having waves and waves of hot flashes, so my body is in repair :)

Hope your blood sugar levels get better on the diet. There are plenty of other carbs to chose from. Have you tried quinoa, buckwheat or millet ? I use them instead of rice all of the time.

Marcia

Oh, so sorry that the blood sugar is not that stable -- sorry for your sake and also because I was hoping that it was related to celiac :-( I've been going through menopause for years and can really relate to that hot flash state. Thankfully, that's over for me.

Re other carbs, my current diet has about 50 g of carb per day because I'm completely intolerant. Millet puts me to sleep -- it's our real killer. Haven't tried buckwheat or quinoa yet but if either of them has more than 7 g of carbohydrate, forget it. That's all I can tolerate at one time except in my almond or peanut butter, which will be lots of fun to have without my rye crackers since I can't eat celery or rice crackers.

YOUR SYMPTOMS-

IBS for as long as I can remember. ME TOO BUT IN A WEIRD WAY, ATYPICAL l

Diagnosed with CFIDS / Fibromyalgia 1990. Completely Disabled since 1992. ME TOO -- 1986

Hiatal hernia, erosive gastritis, gastroparesis May 2004 by endoscopy. ME TOO. THAT'S WHY I HAD MY STOMACH SURGERIES!

Colon polyps, diverticulitus, internal hemorrhoids Aug 2004 by colonoscopy. NO, FORTUNATELY :-)

GP recommended vegetarian + elimination diet July 2005. WFDFSFEFCF (Also, anything that hurts free)

I CAN'T POSSIBLY GO VEGETARIAN BECAUSE I NEED MEAT AND SOLID PROTEINS EVERY 90 MINUTES FOR THE BLOOD SUGAR.

August 2005 eliminated gluten + most "crap" (msg,etc) HAVEN'T TAKEN ANY ACTION YET

GP dx gluten intolerance via gluten free diet Sept 2005. HAVEN'T BEEN DIAGNOSED YET THROUGH SELF OR OTHERWISE

June 2006 - hypoglycemic (3hr test), iron and b12 deficient ME TOO -- BOTH OF THEM

Stopped Klonopin 8/4/6. Finally stopped jerking. No meds. ME TO -- ON KLONOPIN SINCE 1989! HAVE TRIED TO GET OFF THAT DRUG FIVE OR SIX TIMES BUT EVERY TIME I DO, I CAN'T SLEEP AT ALL AND HAVE REBOUNDS PANIC. I'M TRAPPED ON THE PILL AT THE MOMENT.

September 4 - No longer need a motorized cart for shopping. YEAH ! THIS IS SO COOL :-)

September 6 - I am sleeping 9 hours straight. No meds. THIS IS AMAZING :-)

November 17 - Sleeping fine. WALKING EVERYWHERE !!! Tired, but OOT 1 mth and cleaning up after remodeling. OMG, THAT'S WONDERFUL!

Sorry to do all that screaming with the caps. Couldn't figure out another way to do it. Thanks for all your input. I would love to get off the Klonopin -- it's a nasty drug and affects my personality.

Good luck with your blood sugars and hot flashes. Have you considered hormone replacement or isoflavones?

Talk soon. Sigrid

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Hey Sigrid,

I pm'd you so we would not hijack Electra's thread. Sorry about that ... Marcia


Jan 1990 - Dx CFS/ME/FM (URI's, Ataxia, myoclonus, orthostatic hypotension, insomnia, brain fog, swollen lymph nodes, sore throat... ) Completely Disabled (housebound and bedridden at times)

2004 - Digestive pain all the time.

May 2004 - Hiatal hernia, erosive gastritis, gastroparesis (endoscopy)

August 2004 - Colon polyps, diverticulitus, internal hemorrhoids (colonoscopy)

No relief from Nexium, Prilosec, Protonix, Zelnorm, Miralax, Imodium, Lomotil ...

July 2005 - GP recommended WFDFSFEFCF + vegan (Also, anything that hurts free)

Immediately stopped needing naps and digestive pain reduced.

Sept 2005 - GFDFCFSFEF + chemical free - Immediately stopped feeling jittery / buzzing and digestive issues were much better.

June 2006 - Dx B12 and iron deficient. Started B12 injections and using cast iron pan.

August 2006 - MYOCLONUS GONE. (off Klonopin)

September 2006 - ATAXIA, INSOMNIA and Feeling like the floor was moving under my feet gone.

June 19, 2007 - Positive DQ2, Dx Celiac

October 2007 - Sleeping like a baby, waking up with energy, but still having fatigue/stamina issues

Nov 2007 - Started Paleo diet for chronic hypoglycemia

April 2008 - GTT normal. I'm no longer hypoglycemic. Started Low oxalate diet for kidney stones.

May 1, 2008 - Began salt loading for OI/NMH - noticed immediately muscle weakness was gone. I was sodium deficient but my labs don't reflect it. Still working on OI and PEM.

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Hey Sigrid,

I pm'd you so we would not hijack Electra's thread. Sorry about that ... Marcia

Hey Electra --- I'm not sure if I have polyps but I do have the most outrageous , disabling sinus problems that get worse every year. I've always had some form of allergies since I was a kid but over the decades, they're becoming impossible. I really hope that you can get yours under control with the gluten-free diet.

I should be getting my saliva results back any day now but I'm going to go gluten-free tomorrow -- fingers crossed. I completely dread it because it will leave me with 10 foods at the moment and when I remove grains from my diet, my blood sugar will fall too low :-( Hopefully, that will straighten out over time.

How long do I have to stay on the diet before I can say whether or not it's helping me? Two -- three weeks? What's the average?

Thanks. Sigrid

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