Is It Too Late For Me?

[miss vivian]

Hi.. Nice to meet you all.

I am not doing so well right now. I was diagnosed via blood test after going to a gastro for upper abdominal pain. Nothing else was bugging me, except for the pain that would come and go... I was sure that I had an ulcer...

I had felt this pain off and on in my life - I remember once when I was about 18 - and then it happened again at around 30 or so.. I was on a cruise and I had that dull ache in my gut... it was bad.

So, now here I am. I feel like I breath out the taste of blood. Something is rotting in my stomach, I just know it's bad news. I feel like something is inflammed in my chest... almost like an asthma sufferer would feel.

I'm going for an endoscopy on Oct 30, and yes, I am totally off gluten because I am not interested in damaging myself any further. My blood test was pretty conclusive. I'm just going to see how bad I am inside.

Tonight I am dealing with this terrible feeling of inflammation. yeah, that's what it feels like, in my lungs or on my esophagus, I'm not sure which one.

I am barely eating. I eat a pretty good dinner, but lunch a breakfast have been kind of tough as I am on the go a lot.

My upper GI and all of my standard bloodwork from my primary care doctor were good..........Am I over reacting?

My fear is that the damage is extensive, and I won't be able to heal....

I would like to share my other symptoms with you, and see if any others have had similar experiences..

Internal tremors when dozing off to sleep.. Acute anxeity when dozing off to sleep. Fluctuations in blood pressure.. The feeling of pressure, like something was going to burst out of my chest at any moment.(like tonight) Joint pains. Bone pains. Irregular periods ( my whole life) Watery/bloodshot eyes... Being grouchy...etc. Lower right abdominal pain that comes and goes.. sometimes is acute.....

Also have noticed that my sense of smell has INCREASED since I've been off gluten.. Smells make me sick... I notice people's breath if they're walking in front of me - and it makes me sick.

I just want to be able to heal.. I will never go off this diet.. I just hope that it's not too late for me..

Prayers to all of you and thanks for reading and responding if you can.

-V

[ravenwoodglass]

Hi.. Nice to meet you all.

I am not doing so well right now. I was diagnosed via blood test after going to a gastro for upper abdominal pain. Nothing else was bugging me, except for the pain that would come and go... I was sure that I had an ulcer...

I had felt this pain off and on in my life - I remember once when I was about 18 - and then it happened again at around 30 or so.. I was on a cruise and I had that dull ache in my gut... it was bad.

So, now here I am. I feel like I breath out the taste of blood. Something is rotting in my stomach, I just know it's bad news. I feel like something is inflammed in my chest... almost like an asthma sufferer would feel.

I'm going for an endoscopy on Oct 30, and yes, I am totally off gluten because I am not interested in damaging myself any further. My blood test was pretty conclusive. I'm just going to see how bad I am inside.

Tonight I am dealing with this terrible feeling of inflammation. yeah, that's what it feels like, in my lungs or on my esophagus, I'm not sure which one.

I am barely eating. I eat a pretty good dinner, but lunch a breakfast have been kind of tough as I am on the go a lot.

My upper GI and all of my standard bloodwork from my primary care doctor were good..........Am I over reacting?

My fear is that the damage is extensive, and I won't be able to heal....

I would like to share my other symptoms with you, and see if any others have had similar experiences..

Internal tremors when dozing off to sleep.. Acute anxeity when dozing off to sleep. Fluctuations in blood pressure.. The feeling of pressure, like something was going to burst out of my chest at any moment.(like tonight) Joint pains. Bone pains. Irregular periods ( my whole life) Watery/bloodshot eyes... Being grouchy...etc. Lower right abdominal pain that comes and goes.. sometimes is accute.....

Also have noticed that my sense of smell has INCREASED since I've been off gluten.. Smells make me sick... I notice people's breath if they're walking in front of me - and it makes me sick.

I just want to be able to heal.. I will never go off this diet.. I just hope that it's not too late for me..

Prayers to all of you and thanks for reading and responding if you can.

-V

Yes you can heal. It will take time and there is a lot you need to learn but you have found a good place to do so. Ask any questions you need to and be sure to read as much as you can, gluten free is much more than just food. It is doable though and hopefully you will soon be feeling better than you have in a long time.

[Jestgar]

I was about 42 when I stopped eating gluten. Some things cleared up right away. Some things took a couple years. Just stick with and every day you'll get a little bit better.

[psawyer]

My biopsy was done just days before my 46th birthday. I was in desperate shape, having lost about 70 pounds, down to almost skin and bones. I still have residual issues, such as osteoporosis, but my intestines have healed and, on the whole, I feel the best that I have in decades.

It is never too late.

[miss vivian]

Thank you all for your responses..

I am just in the early stages of all of this.. am very grateful to have learned that I have this. Honestly! I did shed a few tears on the second day when it really sunk in how serious this is.. And then I started to feel a sense of enpowerment - because I know that I was the only one who seemed to take these symptoms seriously.

So, as a result, and in a weird kind of way, I feel like I've discovered a lot more about myself as a person. A strong person, which is something that I never really considered myself as being.

I am glad to be here - and am thoroughly grateful for your quick and reassuring responses! You guys ROCK!

I am hooked on this forum already!

Peace! Viv

[MollyBeth]

Hey Miss Vivian, I'm new to all this myself and you are right...It is so overwhelming and it can get serious...but it's also very manageable. Once I figured that out and got organized around my house...making the transition to gluten free went well for me. Some hope for you with the tremors when dozing off to sleep...I had this problem my whole life in my legs and my doctor always linked it to the fact that I'm ADD but in the two weeks since changing my diet they've decreased quite a bit. I'm hoping tht as I continue to heal they'll go away completely. Welcome to the Forum! It's helped my adjustment go very smoothly!!!

[ShayFL]

You CAN heal!! I suffered greatly for 12 years and recovering nicely. Hang in there!! WE are here when you need us.

[jerseyangel]

Hi Miss Vivian

I just wanted to welcome you and let you know that I wasn't diagnosed until I was 49. I had symptoms since childhood, which became worse after the birth of my second child. I lived with my "illness", whatever it was.....I was misdiagnosed many times for the next 20 years or so until a case of the flu in 2003 made me terribly ill to the point I couldn't work anymore. I just never seemed to recover fully from it.

I was in pretty bad shape by the time I went gluten-free 3 years ago, but slowly I have gotten so much better. Hang in there, it's daunting at first, but soon the lifestyle becomes second nature.

[Jenny (AZ via TX)]

It's not too late! I was diagnosed this year at age 47. I have probably had it since my teens. Migraines, dizziness, some tummy stuff, etc. I've been gluten free for about 7 months now. I do feel better but know I'm not totally healed yet. Just take it slow, there is a lot of information to take in and it can be overwhelming at first.

[VioletBlue]

I was diagnosed at 44. The worst of my symptoms have gone away. I'm still dealing with other allergies and chronic bronchitis and a few other things, but the worst of the gluten issues are long gone. In December I"ll have been gluten-free for two years.

The chest pain or uncomfortablness could well be from acid reflux damage. If you look at an anatomy chart, the esophagus runs down the middle of your chest. The acid can cause a burning sensation in the esophagus which people interpret differently, some as pain, some as burning and some as pressure. For me the acid reflux went away after a few months on the gluten-free diet.

I found that my sense of smell and taste changed somewhat over time on a gluten-free diet. For awhile there gluten pasta smells made me nauseous. That may also account for the changes in taste you have. Also for me, the acid reflux can leave an unpleasant taste and smell. I don't know if others smell it from me, but I smell it when I breathed out or coughed.

The worst of the damage is most likely reversible. Few people don't recover on a gluten-free diet.

[miss vivian]

Thanks, everyone for the responses. It's good to know that a person who has been suffering for so long can eventually feel better - all by staying on a diet! I don't think that the food is bad at all. I just feel that I am damaged inside, and somehow, it seems to be WORSE since I went gluten free... But I also got upset for a few days, and I think it hurt my system.

I was enjoying some gluten free rice pudding, but I think that maybe I need to lay off the dairy because I have had a lot of squishing noises in my lower abdomen, and PAIN... but that's a pain that I've learned to live with...

I hope that I can repair the acid reflux, if that's what it is... I dunno.. Still in a whirlwind over all of this and I've known since Oct 2nd.. Almost a month!

I am now curled up with a blanket, and about to read as much as I can from this forum... It's great.

Thanks again- I enjoyed reading your responses. And thank you for welcoming me to this forum.

[jerseyangel]

miss v--

It might be a good idea to stay off dairy for the first few months. The tips of the villi that are responsible for digesting dairy are injured and some Celiacs are temporarily lactose intolerant because of this.

Hopefully, in 3-4 months, you'll be able to handle it again.

[purple]

Welcome to your new family! Soon you will be smarter than the doctors

Everyone here is so helpful and can answer any question very quickly!

I am here learning for my daughter, age almost 20. I can't tell you how wonderful this forum is but you are finding out. Ask lots of questions.

You will get better but as your body gets the gluten out, you may get some strange symptoms.

My daughter once said she didn't know what normal PMS is supposed to feel like but now she has normal PMS. Gluten can play havoc with any body part.

[frec]

Hi--I was diagnosed at 46. You can heal too, and it will be faster if you have the right nutrients to work with. Make sure your doctor does some blood tests to check on any nutrients you might be short on. Have the doctor check your vitamin D levels. They are low in a lot of people and especially in celiacs. Vitamin D helps your immune system and also helps with anxiety--though it is perfectly normal to be anxious after getting a diagnosis like celiac. B12, calcium, magnesium, and iron are also important to check on. As a middle aged female you should also get a DEXA scan (they're easy, not scary) soon to check for osteoporosis--having celiac really messes up your calcium absorption but you will improve now. Ask your doctor about taking a probiotic to help your intestines heal.

There are a lot of lifestyle changes you can make to help with reflux--easy to find by googling on the web or on this site.

Hope you feel better soon!

[cyberprof]

Miss V,

Yep, sounds familiar.

Internal tremors when dozing off to sleep.. YES

Acute anxeity when dozing off to sleep. YES

Fluctuations in blood pressure.. YES

The feeling of pressure, like something was going to burst out of my chest at any moment.(like tonight) Yes

Joint pains. Bone pains. YES and YES

Irregular periods ( my whole life) No

Watery/bloodshot eyes... YES

Being grouchy...etc. YES.

Lower right abdominal pain that comes and goes.. sometimes is acute.... YES.

That's great that your smell is coming back. I think mine is getting worse.

You'll get there.

As for what to eat, eat light foods, and cook all veggies and fruits for a while. It might help to avoid dairy for 2-3 months.

For food, try mashed potatoes (no dairy), cooked sweet potatoes, rice. Avoid corn and hard-to-digest foods. Plain chicken. Don't eat too much..try 5-6 small meals.

[lovegrov]

I was so sick I couldn't walk by myself and didn't have the energy to talk to people. Eleven days in the hospital, 10 weeks off work, and 10 months to really recover. But I recovered and am fine.

richard

[cyberprof]

Miss V,

Yep, sounds familiar.

Internal tremors when dozing off to sleep.. YES

Acute anxeity when dozing off to sleep. YES

Fluctuations in blood pressure.. YES

The feeling of pressure, like something was going to burst out of my chest at any moment.(like tonight) Yes

Joint pains. Bone pains. YES and YES

Irregular periods ( my whole life) No

Watery/bloodshot eyes... YES

Being grouchy...etc. YES.

Lower right abdominal pain that comes and goes.. sometimes is acute.... YES.

That's great that your smell is coming back. I think mine is getting worse.

You'll get there.

As for what to eat, eat light foods, and cook all veggies and fruits for a while. It might help to avoid dairy for 2-3 months.

For food, try mashed potatoes (no dairy), cooked sweet potatoes, rice. Avoid corn and hard-to-digest foods. Plain chicken. Don't eat too much..try 5-6 small meals.

And I forgot to say that all of the above symptoms are now mostly gone.

[Amber M]

Hi.. Nice to meet you all.

I am not doing so well right now. I was diagnosed via blood test after going to a gastro for upper abdominal pain. Nothing else was bugging me, except for the pain that would come and go... I was sure that I had an ulcer...

I had felt this pain off and on in my life - I remember once when I was about 18 - and then it happened again at around 30 or so.. I was on a cruise and I had that dull ache in my gut... it was bad.

So, now here I am. I feel like I breath out the taste of blood. Something is rotting in my stomach, I just know it's bad news. I feel like something is inflammed in my chest... almost like an asthma sufferer would feel.

I'm going for an endoscopy on Oct 30, and yes, I am totally off gluten because I am not interested in damaging myself any further. My blood test was pretty conclusive. I'm just going to see how bad I am inside.

Tonight I am dealing with this terrible feeling of inflammation. yeah, that's what it feels like, in my lungs or on my esophagus, I'm not sure which one.

I am barely eating. I eat a pretty good dinner, but lunch a breakfast have been kind of tough as I am on the go a lot.

My upper GI and all of my standard bloodwork from my primary care doctor were good..........Am I over reacting?

My fear is that the damage is extensive, and I won't be able to heal....

I would like to share my other symptoms with you, and see if any others have had similar experiences..

Internal tremors when dozing off to sleep.. Acute anxeity when dozing off to sleep. Fluctuations in blood pressure.. The feeling of pressure, like something was going to burst out of my chest at any moment.(like tonight) Joint pains. Bone pains. Irregular periods ( my whole life) Watery/bloodshot eyes... Being grouchy...etc. Lower right abdominal pain that comes and goes.. sometimes is acute.....

Also have noticed that my sense of smell has INCREASED since I've been off gluten.. Smells make me sick... I notice people's breath if they're walking in front of me - and it makes me sick.

I just want to be able to heal.. I will never go off this diet.. I just hope that it's not too late for me..

Prayers to all of you and thanks for reading and responding if you can.

-V

Hi, Welcome. I am new here too, 3 months gluten free. You are lucky you got so many responses. I am beginning to feel unwelcome, no one ever answers me it seems. I have many intorerences right now caused by the wheat. My Allergist says I can try a few more things after about 6 months of being gluten free. As for all of your symptoms, I can relate, adding a lot of neurological ones too. I am a mess this week because I forgot to check the label on the Fresh chicken (marinated in garlic and herbs)! I ate it 5 times this week and am paying for it dearly. But what I wanted to tell you about the acid reflux was that I recently read about how acid reducers (all types) used long term can mess up your digestive system too. Then I read about digestive enzymes. I started Acidophilus and "enzymedica-Digest" about 3 weeks ago. I went "cold turkey" off the stomach pills at the same time. I almost had the problem licked until this week. I am back on track again now. I also sleep up on 2 pillows for at least the first half of the night. And, I eat less at a time and not after 7 or 8 in the evening. I make sure I am up for at least 3 hours after I eat. I picked the "Enzymedica" brand because it is a company that only makes enzymes. There is a lot of information out there on Enzymes. I wish I had known this sooner. Maybe it will help. Good luck.

[miss vivian]

Hi, Welcome. I am new here too, 3 months gluten free. You are lucky you got so many responses. I am beginning to feel unwelcome, no one ever answers me it seems. I have many intorerences right now caused by the wheat. My Allergist says I can try a few more things after about 6 months of being gluten free. As for all of your symptoms, I can relate, adding a lot of neurological ones too. I am a mess this week because I forgot to check the label on the Fresh chicken (marinated in garlic and herbs)! I ate it 5 times this week and am paying for it dearly. But what I wanted to tell you about the acid reflux was that I recently read about how acid reducers (all types) used long term can mess up your digestive system too. Then I read about digestive enzymes. I started Acidophilus and "enzymedica-Digest" about 3 weeks ago. I went "cold turkey" off the stomach pills at the same time. I almost had the problem licked until this week. I am back on track again now. I also sleep up on 2 pillows for at least the first half of the night. And, I eat less at a time and not after 7 or 8 in the evening. I make sure I am up for at least 3 hours after I eat. I picked the "Enzymedica" brand because it is a company that only makes enzymes. There is a lot of information out there on Enzymes. I wish I had known this sooner. Maybe it will help. Good luck.

Amber,

Thanks for your response.. I think maybe I got so many responses from so many people because of my age concern. I put that in the subject line on purpose - because it's the truth and I wanted to hear from some of the people who were older like myself and maybe a little worse off - and see how they recovered.

I'm sorry about your suffering.. I hope that things get better soon for you.. I am in a state of shock about my diagnosis, but I am determined to get better.. I have a lot of symptoms that I would never have imagined were related to this - never in a million years would I suspect Celiac.

I appreciate your response , as well as everyone's responses on here.. It's been unbelievable to me how many people are able to share their stories and advice.

I will be in touch. Drop me a line whenever you feel the need to chat.

- Viv

[miss vivian]

I was so sick I couldn't walk by myself and didn't have the energy to talk to people. Eleven days in the hospital, 10 weeks off work, and 10 months to really recover. But I recovered and am fine.

richard

Richard, I am glad to read that you're better. Wow, that must have been an ordeal. Thanks for your response.

[Amber M]

Amber,

Thanks for your response.. I think maybe I got so many responses from so many people because of my age concern. I put that in the subject line on purpose - because it's the truth and I wanted to hear from some of the people who were older like myself and maybe a little worse off - and see how they recovered.

I'm sorry about your suffering.. I hope that things get better soon for you.. I am in a state of shock about my diagnosis, but I am determined to get better.. I have a lot of symptoms that I would never have imagined were related to this - never in a million years would I suspect Celiac.

I appreciate your response , as well as everyone's responses on here.. It's been unbelievable to me how many people are able to share their stories and advice.

I will be in touch. Drop me a line whenever you feel the need to chat.

- Viv

Thanks so much for your response too Viv. I am 51 and I never suspected all of my health problems were wheat related either until a friend mentioned Celiac disease and I started reading about it. I am going thru Entrolab this week to have the stool and gene test. I think my daughter has it too. She has Graves disease and artheritis at 34 years old. Many other symptoms too. I have a granddaughter too. So the gene test is for them. Thanks so much and good luck. Amber

[CMCM]

My mom was finally diagnosed at 45 or so. She nearly died, because this was the mid 1960's and hardly anyone knew a thing about celiac disease. She was truly almost dead of starvation, I think: 85 or so pounds, couldn't keep anything down, and doctors kept telling her it was "in her head." Finally, thankfully, she got a new doctor who asked her if she had ever lived in certain tropical places, thinking her symptoms sounded like tropical sprue. He tested her, did a biopsy which showed her villi to be GONE, her stomach lining was nearly destroyed, lots of other things, and he was smart enough to figure out she had celiac disease. She went gluten free, and was better within a few months, had regained all her lost weight, felt great. They did a re-test of her biopsy and found the villi had mostly regenerated.

She is now almost 88, in great health, no problems at all!

So once you know the facts, eat carefully and avoid all gluten.

[Amber M]

My mom was finally diagnosed at 45 or so. She nearly died, because this was the mid 1960's and hardly anyone knew a thing about celiac disease. She was truly almost dead of starvation, I think: 85 or so pounds, couldn't keep anything down, and doctors kept telling her it was "in her head." Finally, thankfully, she got a new doctor who asked her if she had ever lived in certain tropical places, thinking her symptoms sounded like tropical sprue. He tested her, did a biopsy which showed her villi to be GONE, her stomach lining was nearly destroyed, lots of other things, and he was smart enough to figure out she had celiac disease. She went gluten free, and was better within a few months, had regained all her lost weight, felt great. They did a re-test of her biopsy and found the villi had mostly regenerated.

She is now almost 88, in great health, no problems at all!

So once you know the facts, eat carefully and avoid all gluten.

I will never eat gluten again! My deceased grandmother had intestinal problems all of her life. She lost about 1/2 of them when she was very young. My father and I were talking about it last night. Her mother also had the same problems according to my father. Of course, back then, they probably did not have the disease figured out, or at least named. Now that I look back, I remember my grandmothers problems, and talking about it with her. I'm happy to hear your mom is still doing well!

[ShayFL]

Amber you are most welcomed here. I try to catch "newbie" threads everyday so people dont get overlooked.

[irish daveyboy]

Hi Viv,

I was 57 when I was diagnosed, I suppose I had symptoms all my life without realising it.

I have had 'Acid Reflux' for ever, always seemed tired, susceptible to flu and chest infections,

'mouth ulcers', dry skin, all the classic symptoms.

.

I'm 61 now and a lot happier if not a little too 'rotund' from eating all my gluten-free creations, but that's another story!

.

My Friend who is also a Coeliac had his mother checked and she was biopsy diagnosed at 83, she is so much better in herself now on the gluten-free diet.

.

So in answer to your question: Is it too late for me??

.

The answer is a resounding!! It's NEVER too late!

.

Best Regards,

David