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So Far.......so....weird?


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#1 MEH

 
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Posted 11 February 2011 - 08:22 PM

I was once diagnosed with Multiple Sclerosis and for years believed I had MS. I have B-12 deficiency, too, and must do monthly injections. I have asmthma. And acid reflux. I have been to every doctor and had every test. I've had aches and pains, blood sugar issues, brain fog, irritability, bloating, fatigue and insomnia for so long that I don't know what life is like without it.

It only occcured to me a few weeks ago that this could ALL be wheat related when I realized on a few separate occassions that sandwich bread and pizza made me brain fogged, sick and gassy.

So, as an experiment, I gave up wheat for a few days. And my whole life changed. Over night. Maybe instantly. No more brain fog. No more gas. No more bloating. More energy. Reduced acid reflux. I'm breathing better. I'm not feeling crazy and moody! The list goes on.

I was on the Montel Williams show once for a piece I wrote on MS! I was very active in the MS community. But I started to realize after several years that it must be something else...my issues didn't seem to follow an MS-like pattern.

Why did not ONE doctor in the last twenty years mention wheat sensitivity? And with all the research I've done, why didn't it occur to me? I literally had no idea this might be a problem, and yet everything I look up in regards to wheat sensitivity, I see my own symptoms time after time.

I haven't felt well my whole life! And now, at the age of 48, I am suddenly getting it?

I plan to continue to be gluten-free for two months..and by then, I am sure I will be able to self-diagnose to some degree. I am not sure that I want to be gluten-challenged because even after a week without gluten, I know I never want to feel the way I used to!

But, right now I am feeling mad.

If I could only recount the hours I spent, the money I spent, the time and effort and tears and difficulty...and the whole time....it was an allergy, maybe?

I have lost years here.

Days when I couldn't think straight and then the next day I'd be better.

Weeks lost. Months lost. Years lost, when I add them up.

If this indeed is what is wrong with me.... I vow to spend the rest of my life educating doctors!

For now, I can't tell you how nice it is to look down at my stomach and not look four months pregnant!

Lighter on my feet today.

Lighter in my life.
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#2 mushroom

 
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Posted 11 February 2011 - 08:39 PM

CONGRATULATIONS!!! MEH. It is an amazing experience when the light bulb suddenly illuminates the room, isn't it? And so frustratingly maddening to think of all that lost time, all that darkness, all that suffering, all those wasted doctors' visits, grrrr... but yes, lighter on your feet, lighter in your life, let's focus on the joy of discovering the true nature of your malady, and the easy cure for it :rolleyes: :D

But good luck on the educating doctors bit :o ; I know you're only 48, but I really don't think you have enough years left :lol:
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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

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

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
Now tolerant of lactose

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#3 Cypressmyst

 
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Posted 12 February 2011 - 01:57 AM

Oh I know how you feel. Believe me. There are days when I want my childhood back. I was sick all the time, had the same doctor for 4 years and he never once bothered to do his job. Just kept saying "eat more fiber." or yelling at me to stop throwing my Metamucil down the drain when my Mom wasn't looking. :angry:

He's dead now or I'd have more than a few choice words for him I can tell you.

MS is caused by gluten. As are all auto-immune disorders as near as I can tell from my many, many months of arduous research. I can only conclude that Doctors don't want to hear it because it isn't a pill and it goes against the mantra of wheat being the staff of life.

Don't give up on the MS community! If you were active go there and spread the word about how they can get well. Tell them your story and help to get them off the drugs and the poison!

Check out this blog by the Gluten Doctors for more on this.

And here she postulates as to why it is so commonly overlooked.

I really think gluten is poisoning all of us, some just take longer to show symptoms than others. Depends on how stressed the body is and your genetics. Cancer and Heart Disease are now being linked to this stuff too.

Congrats on figuring out gluten was killing you. Now for the fun part of watching yourself age backwards. B) Pretty nifty.



I know you're only 48, but I really don't think you have enough years left :lol:



Mushroom that cracked me up. :lol:
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Grain Free
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Free Willy
Freedom's just another word for nothin' left to lose...

...dang...there goes chocolate... :bawl:

#4 ravenwoodglass

 
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Posted 12 February 2011 - 04:24 AM

I am glad you figured it out. I was thought to have MS and a slew of other things also. I was the about same age as you when I was finally diagnosed. I would love to write to all my old doctors but as of yet, over 8 years later, I am still to angry to do so. Be sure you are avoiding wheat, rye, barley and oats and not just wheat. If you still have contact with Montel you might want to clue him in on the possiblity also. Ask any questions you need to here and do be aware that some ups and downs are common in the first weeks.
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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)

#5 hnybny91

 
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Posted 12 February 2011 - 06:17 AM

it was suspected at one time that I had early signs of MS too. It is crazy all the things gluten can do to your body!
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#6 mamaw

 
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Posted 12 February 2011 - 07:58 AM

Yiu have a wonderful story,but I agree doctors just don't understand or maybe don't care to. Please continue to educate anyone who will listen. You are proof that happy endings do happen but everyone must take charge of their own being. We are the ones who know how we feel not the doctor...
You are so blessed & I wish you continued health...Itoo was given a very negative result from alot of testing & illness through the years ALS. I went gluten-free & have never been better but the other autoimmune goodies are catching up with me from the wrong dx years ago...


Blessings to you
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#7 Takala

 
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Posted 12 February 2011 - 01:00 PM

Oh, I heard that also, more than once, that it was likely MS. :angry: It was on one of the MS alternate natural therapy type boards (you know, the ones the medical and pharma professions really hate) that said some forms of it seemed to respond to a grain free diet. Unfortunately I lost the bookmark a few years ago and can't find the blog again, there are a lot of other supposedly good for MS diets out there now and of course they are all different and all "controversial."

The same thing with the sero negative arthritis boards. What the two diseases have in common is that both patient populations seem to come from peoples who descend from those living closer to the Arctic circle in the past - Northern Europeans and the like - introduce them to the standard westernized, high wheat diet and things tend to go to hash with the auto immune problems.
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#8 Judy3

 
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Posted 12 February 2011 - 02:55 PM

I can so relate to this post. I was through the 'wringer' so to speak for years, sick as a child all the time. I thought everyone had nausea all the time when they ate so I didn't complain. I'm 53 years old and was diagnosed 3 months ago. I haven't felt this good in my entire life. I would love to rant and rave at the doctors too but have decided that I have a whole life to live and things to do that I couldn't do before. No more muscle pain, no more nausea, stomach pain or bowel issues. I can go where I want and do what I want and this is precious to me as it is to you too.

We should have a 'Diagnosed Later in Life' club and go on an annual gluten free cruise to celebrate getting our lives back (or starting them finally pain and sickness free). :P


Glad you finally found something that works for you... hang in there it gets better every day!
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*Judy

Food allergies to fish, seafood, tree nuts, aspartame(Equal),flax seed, and many drugs
Stomach issues since childhood
Hypoglycemia (low blood sugar) age 6-44
Diabetes age 44 to present now going back to Hypoglycemia since gluten free.
Diagnosed with Fibromyalgia in 2005 and it's gone now that I'm aspartame and gluten free. Hmmm
Celiac disease- negative test in 2009, positive tests in Nov. 2010
Gluten free started 11/08/2010
Genetic tests positive- DQ2, positive -DQ6 (?) negative- DQ8 11/15/2010

#9 ravenwoodglass

 
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Posted 12 February 2011 - 04:26 PM

We should have a 'Diagnosed Later in Life' club and go on an annual gluten free cruise to celebrate getting our lives back (or starting them finally pain and sickness free). :P



Sign me up, especially if there are some older unattached nice guys that are going. ;) :D
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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)

#10 yolo

 
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Posted 12 February 2011 - 11:18 PM

I so relate. A year before I finally figured out I needed to be off all trace gluten, I was diagnosed with having reduced myelin sheath (down to 50% of what is normal). Before I went off trace gluten I thought I just had a gluten "allergy." I experimented by going off all trace gluten that I could think of that I might be in contact with, and soon discovered I felt so much better!! Of course this in itself was a learning curve.

Soon I also discovered that when I got "cross contaminated" (CC) with gluten, it gave me diarrhea and migraines, and if often enough, it made me weak and more prone to get bacterial infections. After a rocky first six months, I now rarely if ever get ill except again if I get CC'd. Unless I am with my family, or around certain building materials or go to the wrong restaurant, I am fine--and actually more than fine, in peak health!!

So yes it is so very worth it. Like so many of us here I had a life of constant lingering illnesses and weak, achy joints and nerves.

I also recently discovered that I am intolerant of salicylic acid found in many fruits, vegetables and herbs. Being off salicylic acid as well as gluten etc. is making a huge difference in healing my nervous system. Others here have similar sensitivities to casein or soy etc. It is again so very worth finding out about these sensitivities as well as the gluten problem. I applaud your realization and wish you a wonderful journey towards increased health.

The more of us that spread the word meanwhile, the better. And yes do tell Montel!! Plus yes it would be fantastic idea for many of us to celebrate our renewed health together somehow, whether on a cruise ship or some other venue, perhaps in many parts of the country. I think t here a re more of us now who know about this road towards health than there were just five years ago. We should start to think of ways to become more visible to each other just because its a life affirming idea!

Bea
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Diagnosed celiac sprue as infant: failure to thrive & pneumonia-back on grains age 4. Began herbs 1971 combating chronic kidney disease/general ill health 1973. Avoid wheat family and "allergens" by 1980. Late 80's doc. diagnosed candida: cave-man diet. Diagnosed degraded myelin sheath 2006; need co-enzyme B vitamins. Discovered celiac fall 2007; finally told diagnosis as infant. Recently found I am salicylic acid intolerant. Ironically can't tolerate most herbs now. Can now eat brown rice & other gluten-free grains (except corn) & even maple syrup & now homeopathic medicine works! Am still exploring the shape of this elephant but I've made progress!

#11 kayo

 
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Posted 13 February 2011 - 07:18 AM

We should have a 'Diagnosed Later in Life' club and go on an annual gluten free cruise to celebrate getting our lives back (or starting them finally pain and sickness free). :P


I'm already packed - let's go!
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40 year old former foodie on a quest to feel better!

-IgE to oats and rye
-Diagnosed with Colitis via endoscopy/colonoscopy Oct '10
-Following FODMAP diet since June '10, Positve SIBO test, July '10
-Diagnosed non-celiac gluten intolerant June '10 (celiac in March '10, endocsocopy in Oct '10 shows no signs of celiac)
-Osteopenia June '10
-Gluten free since July '09 & Soy free since December '09
-Dairy free since '06
-IBS & Sjogren's diagnosed '05
-RA diagnosed as a toddler


#12 sahm-i-am

 
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Posted 13 February 2011 - 09:15 AM

WOW! What a wonderful post - if this is truly what is causing your poor health and you get organized to educate doctors PLEASE sign me up! I had an oncologist that was convinced I had lymphoma, scared the bejezzus out of me and my family. I even asked her if it could be Celiacs, asked her to run the tests TWICE! She refused, she was so sure I had cancer and started the chemo process. I went to another oncologist who listened to me and it turned out to be Celiacs!! I would love to help educate the medical community. My new GI doctor even said that most of his Celiac patients know more about it than he does, just the nature of people with a gluten sensitivity I suppose!
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Diagnosed with Lymphoma March 2010. After surgery doctors said "Oops!"
Diagnosed with Celiac Disease April 2010. After endoscopy doc said "Aren't you glad?"
Uhhh.....yeah!
DD #1 ('99) tested negative on bloodwork but positive on 2 genetic markers. Went gluten free in July 2010 and has been symptom-free ever since!
DD #2 ('98) tested negative and has no symptoms. Didn't fork out money for genetic testing. Will watch and test regularly.
Husband tested positive in July 2010 and has refused to go gluten free. Uh huh, that's gonna bite him in the a** one day! (Pun intended!)

#13 T.H.

 
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Posted 14 February 2011 - 12:34 AM

The more of us that spread the word meanwhile, the better.


So, so true. I've had this thing since I was in my teens and wasn't diagnosed until I was 38. Then my daughter wouldn't have been diagnosed except we insisted she be tested after my diagnosis. Add on to that the kids of numerous cousins of mine who are all having stomach pain and their doctors ALL have told the parents that their kids are just suffering from 'stress' about school. :angry:

22 years and the doctors are STILL screwing this up!

I think the only way I cope with the anger sometimes is that I decided to be completely overly-chatty and spread the word. constantly. Any time I hear someone talking about aches and pains, stomach pain, exhaustion, depression, etc... I mention celiac disease. I don't say they have it, but I mention it as something they might like to look into. I have brief 'advocacy moments' on blogs that have nothing to do with health or personal stuff. I talk to cashiers about it when they see me buying specialized products for the kids.

Every chance I get, I'm spouting off about this. And I'm sure I annoy the heck out of some people. Sure of it.

But I've also had a number of people come back and say thank you, because gluten WAS their problem. One woman had essentially given up, she'd been so sick for so long and every last test came back negative. She figured she would just die fairly young. And going gluten free was all it took to suddenly feel alive again.

I figure even if it's only a few people, it's still something. It's the rest of their LIFE, and that life is not going to end prematurely because now they finally have a fighting chance. And sometimes, it STILL makes me mad, because it's obvious that doctors failed these other folks, too.

But at least I can think: the docs failed them, but the celiac community didn't. That's something, and it's a good something.
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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


#14 mcc0523

 
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Posted 14 February 2011 - 05:37 AM

I've had "possible MS" mentioned to me, by doctors and other MS patients. I had the "walk", stiff and shuffling of feet. I have a borderline-Chiari malformation, which can cause symptoms that are similar to Celiac/gluten-intolerance, and if I hadn't gone gluten-free, I would have probably had surgery by now. I'm so glad that I had others in my life talk about their own issues with gluten, and eventually convince me to try it, just try it for a few weeks, and see what happens. And I am NOT going back on gluten, not on purpose (I've been cc'ed yesterday... oh I forgot how much the stomach pain SUCKED!)

I have been talking about Celiac and gluten-sensitivity to others. I know my parents could benefit greatly from a gluten-free diet... plus they wouldn't be as likely to cc me. My best friend has gone gluten-free, and he hasn't felt better in years. He is also trying to convince his parents to do so, as they are VERY addicted to the stuff. I'm sure I annoy people... "Oh no, it's the "gluten-free" girl again! Run, HIDE!" But I hope to at least plant seeds, like others who have had Celiac/gluten-sensitivity have done for me in the past.
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DX: Ehlers-danlos syndrome, cervical syrinx, Postural Orthostatic Tachycardia Syndrome, Barrett's Esophagus, GERD, osteoporosis, thyroid disease, anemia, hypokalemia, niacin deficiency, vitamin D deficiency and various other malnutritions.

Although not diagnosed officially yet, I have suspected celiac since October of 2010. At least 2 separate physicians who are experts with collagen deficiencies (such as Ehlers-danlos syndrome) have mentioned the possibility to me, and one has tested (although I haven't gotten the results back yet).

#15 Camp Laffalot

 
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Posted 14 February 2011 - 07:05 AM

I was diagnosed 2 weeks ago by my new internist. She actually LISTENED to my loooooong history and immediately said "I'm going to test you for Celiac/Sprue." Came back positive and I am now on a gluten free adventure!

Talk about being misdiagnosed for years? I will be 72 years old in a few weeks and have been sick much of my life!!!!

Hindsight is 20/20.

Thanks for all the support and answers I've already found on this site! I'll be around a lot!

Gentle hugs around the room!
Mary Ellen
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