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

[MEH]

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.

[mushroom]

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

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

[Cypressmyst]

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.

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!

Open Original Shared Link

Open Original Shared Link

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. Pretty nifty.

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

Mushroom that cracked me up.

[ravenwoodglass]

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.

[hnybny91]

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!

[mamaw]

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

[Takala]

Oh, I heard that also, more than once, that it was likely MS. 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.

[Judy3]

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).

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

[ravenwoodglass]

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).

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

[YoloGx]

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

[kayo]

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).

I'm already packed - let's go!

[sahm-i-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!

[T.H.]

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.

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.

[mcc0523]

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.

[Camp Laffalot]

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

[ravenwoodglass]

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

Welcome to the board. Gee I thought I had the record for misdiagnosis at over 40 years! I am soooo glad they finally figured this out for you. It is a big change but it will be so worth it. Ask any questions you need to and I hope you heal quickly.

[Cypressmyst]

Yup, for every person who scoffs and thinks you are a nut-case there is another who listens and gets their life back.

Worth annoying a few folks I think. I'm sure glad my cousin talked to me, even when I did not immediately want to hear it. It did sink in and life is so much better now.

[YoloGx]

I am really enjoying reading the recent comments on this thread. Sometimes I feel a little overwhelmed since a number of my siblings are in denial about their likely gluten intolerance -- and my mother is adamant in insisting she outgrew celiac/sprue when she was 18. I just can't change them. They would have to want to and they don't and won't. however there are plenty of other people I have helped--including my boyfriend and by extension several members of his family as well as some of his associates. His symptoms were more migraines and ADHD. His father had DH and treated his symptoms by drinking too much alcohol.

The lesson is those who listen will and those who won't won't--however the benefits of the crowd that listens far outweighs those that think we're nuts. And honestly the proof is in who is healthier and happier after all.

Bea

[IrishHeart]

Add me to the group!

A lifetime of clueless doctors, horrible pain, illness, miscarriages, surgeries, "oh, it's JUST IBS--take these drugs", "oh, it's probably fibro--take these drugs"...severe sudden weight loss, hair loss, lost muscle mass, teeth yellowing decaying rapidly, osteoarthritis...on and on...one doctor put me on METHOTREXATE because he insisted I needed it to feel better(despite no RA or lupus ) I was so desperate for relief from the pain, and at my family's urging, I reluctantly tried it and was sick and lived in the bathroom for a week. Another wrong road.There's more-- but why preach to the choir?--you have all LIVED it!

I aged ten years in 2. No one could explain why I was deteriorating in front of their eyes?

THOUSANDS of $$$ spent on treatments, doctors, supplements, MRIs, XRAYs, Scans, scopes,pain clinics, ANYTHING to get well....nothing worked.

I've been poked, prodded and given dangerous drugs that did nothing except cause MORE pain and suffering.

Nothing changed...I got worse!!... until I couldn't think straight or sit, lie down or stand without searing pain...I was in hell.

Until I diagnosed myself and had a GP doc confirm. (this is after asking repeatedly for 1 year for someone to hear my pleas about celiac and having a NEG panel)

gluten-free and 6 weeks later, and I no longer have raging anxiety or brain fog that scared me to death. I have so much HOPE now!!

ANGRY at the medical profession for years of misdiagnosis? YOU betcha!

But I offset that anger by educating others on the dangers of gluten. My own family has been the hardest to convince and they are all burdened with autoimmune diseases. They are all in denial. When I am truly healed, maybe they will see the light.

Fortunately, despite the pain, illness and fear, I had a great husband to support me. I know how blessed I am, believe me!! And above all else, I never lost my desire to get my life back or my sense of humor...although most days, it wasn't very funny at all. Some days were very dark. When I say I will write a book, I mean it. People need to know what's killing us all.

All of you are my inspiration!

When you arrange that cruise, please count me in!! LOL

hugs to all!!

[notme]

congratulations to everybody! i just turned 48 last week (misdiagnosed for 25 years) and have been gluten free since july - i feel *awesome*!!! i can't tell you how many people have come up to me and told me how wonderful i look! (now, i'm taking this as a compliment lol i must have looked awful before) people ask me "did you color your hair?" "what's different??" etc - sunday my daughter told me i look 10 years younger yes, i missed alot of time being sick for no apparent reason... but i'm better now so i'm not going to be wasting any more time pining or being angry - woohooo i feel great!! ps - didn't notice how bloated i was until it disappeared.... pps - i can go on that cruise if it's FREE lol

[jenngolightly]

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.

Your story hits a nerve for a lot of people. It takes a long time for most of us to get the right diagnosis because Celiac (wheat sensitivity) presents itself so differently in everyone. There was a time when I was also thought to have MS and that was one of the hardest for me to emotionally cope with. I has so many specialist doctors, and no one talked to each other. But I was taught that doctors know best and to follow their orders. Finally, in 2007 I had to get a new pcp for insurance reasons and she reviewed all of my history and immediately suspected Celiac... I'd never heard of it before. I no longer see any specialists, just my lovely pcp. I've also learned to question diagnoses and to research everything. I admire your passion to educate doctors - it sounds like you have the background to be able to do that well.

[IrishHeart]

congratulations to everybody! i just turned 48 last week (misdiagnosed for 25 years) and have been gluten free since july - i feel *awesome*!!! i can't tell you how many people have come up to me and told me how wonderful i look! (now, i'm taking this as a compliment lol i must have looked awful before) people ask me "did you color your hair?" "what's different??" etc - sunday my daughter told me i look 10 years younger yes, i missed alot of time being sick for no apparent reason... but i'm better now so i'm not going to be wasting any more time pining or being angry - woohooo i feel great!! ps - didn't notice how bloated i was until it disappeared.... pps - i can go on that cruise if it's FREE lol

Hi NOT ME!

Thank you for this post!! I look and feel dreadful (nothing like I did just 2 years ago) BUT every time I read someone's post that says they feel "Awesome" , I am INCREDIBLY encouraged!! Good for you!! I agree---I missed 3 years of my life -- and once I feel better, I am going to take hubby and just TRAVEL and do whatever we feel like!! I guess I hold a bit of anger because my primary care doctor's own children have celiac and he didn't see what was right in front of him for so long. I was in his office repeatedly for so many horrible symptoms, but he kept sending me to specialists.....and I consulted a few on my own. If I had not been my own best advocate, endlessly researching, I wonder if the +scooter" one smug doctor suggested I get wouldn't be under my butt right now.

And the PC doc? I forgave him. I need my energy for healing.

Not sure I can afford the cruise either, but it IS a great idea!! LOL

Enjoy your new good health!!

[MEH]

Thank you all so much for these amazing replies. I am just flabergasted by how much everyone has gone through in their lives.

It's so wonderful to be potentially on the road to healing!

I look forward to being a part of this community....and to feeling better once again...

[ravenwoodglass]

congratulations to everybody! i just turned 48 last week (misdiagnosed for 25 years) and have been gluten free since july - i feel *awesome*!!! i can't tell you how many people have come up to me and told me how wonderful i look! (now, i'm taking this as a compliment lol i must have looked awful before) people ask me "did you color your hair?" "what's different??" etc - sunday my daughter told me i look 10 years younger

Amazing isn't it. I ran into someone I hadn't seen in years a few days ago. Her nickname for me was 'Bones' her first comment after a big hug was 'Your not bones anymore you look great!!!'. The funny thing is I actually weighed more back then but it was all bloat.

[Judy3]

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

Hey I'm all for the older unattached nice guys!!!