Want To Have A Little Gluten?

[manasota]

I was diagnosed with Celiac Disease over 5 years ago at the age of 60 soon after being diagnosed with breast cancer and Graves Disease.  I have been too sick to work for nearly 15 years due to extreme pain and fatigue--which nobody knew the cause or could offer help.  My disabled (due to degenerative disc disease) husband and I are living off social security and our savings.  Obviously, we did not foresee being unable to work at such early ages (about 50 years old).  My primary goal is to return to work.  Feeling good would be a bonus.  I've been gluten free for 5 1/2 years, SCD for 2 1/2 years, low fructose and low fodmaps for about a year, I think.  All of my limited energy goes to food production, yoga, meditation, lifting light weights (3 lbs), and doing Celiac research on the computer.  I have gotten much info from this forum.  The reason I am posting now (after 5/1/2 years) is that I cannot find much information on the prognosis for someone diagnosed at age 60 or more.  Do you know of anyone diagnosed at age 60 or more who has ever gotten well enough to work again?  Like many of you, I suffered all my life with Celiac-related issues which were neither recognized nor helped by any physicians.  I am soon to be 66 years old.  My lifetime is running out while I wait to realize improved health.  Anybody know if it's even possible for somebody like me??????  I am so sick and tired of being sick and tired.  So, if you're young and thinking that you might just eat a little bit of gluten--DON'T!!!!!!!!!!

[kareng]

Maybe try a part time job?  Like a receptionist in an eye doctor's office? That's my example because it seems my eye doc always has new people who just work a few hours a week.  Sometimes you have to extend yourself to build up the strength and energy to work or walk longer distances or lift greater weights, etc.  

 

When you say "food production" are you growing your own food?  Maybe that could be a way to make money by planting more than you need or selling extra  eggs and meat?

[manasota]

You are very kind and offer good suggestions.  However, every time I "extend myself", I have to pay for it.  Two days ago, I "attended" a 1-hour webinar to update my continuing education for my pharmacist license and a 1-hour webinar for Celiac info sponsored by the National Foundation for Celiac Awareness.  Two extra hours of activity.  Then yesterday, I had to sleep all afternoon because I was in so much pain and so tired i couldn't stay awake.  This happens every single time I extend myself.  Because of this extra need to sleep, I did not have the energy or time to bake the almond flour muffins which are a staple of my diet.  My "food production" consists of baking twice a week and daily cooking on the most simple/elemental level as I must eat everything made from scratch in my kitchen.  It would make a world of difference if I could eat anything readymade; but I can't.  So, my extra 2 hours of "work" required a more than 2-hour payback--and I do not have any energy to spare.

[kareng]

I am wondering if you might have some extra issues?  I was not young when I was diagnosed and probably had active Celiac at least 15 years.  It did take several years, but I find that I can do more and more things by building up to them. Perhaps Celiac isn't really the problem any longer?

[Jays911]

I think kareng may be right.  I got diagnosed this year at 61, and know, in retrospect, that I must have had celiac for at least 20 years.  My energy levels are higher than they were before i went gluten-free, and I work a 40-50 hour week.  My guess, too, is that there is something in addition going on.  I hope you figure it out.  Blessings.

[manasota]

That is entirely possible.  I have been to a plethora of physicians (including those at Duke, Duke's Integrative Medical Ctr, and UNC Chapel Hill) and they have run out of ideas.  I have tried Rolfing, NAET, acupuncture, biofeedback, etc.  Really, my hope hinges now on the length of time spent healing.  I figure I'm 5 1/2 years in & wondering if anyone in the older age category has experienced healing further down the road.  I'm hoping to hear from people diagnosed in older age who DID manage to heal after 5 years or more gluten free.  

[celiac sharon]

I agree with kareng, I was diagnSed at 53,, and of course like all celiacs, I have good and bad days, and days I struggle with joint pain and fatigue, but I am still able to work full time as a nurse. I have, however, taken a job that doesn't require heavy work, I'm 58 now and don't think I could still do bedside nursing, but I am very active and exercise daily. I think you really should look into other autoimmune disorders

[nvsmom]

I'm guessing that your healing is done and you are dealing with other issues or possibly some permanent symptoms.  

 

Are you hypothyroid now?  That can wear one down.

[kareng]

Here is a story of someone I know - she isn't on C. com.

 

Diagnosed with Celiac in her late 70's about 4 years ago because one of her kids was diagnosed.  She is doing great.  She doesn't work but is very active  and a gourmet cook (that takes a lot of time, more than I usually want to take).  She is busy packing up her house to move somewhere warm - where she is overseeing the building of a new house.  She wants to be outside walking and gardening all year round.

 

But... she was very motivated to get back to life and worked her way up to it by increasing her activities a little everyday - just as I did.

[manasota]

You all are very kind and offer good info.  Thank you.  Yes, low thyroid hormone could be an aggravating factor now as my dose was recently increased (not long enough to provide benefit); and I will need another increase as an interacting medication (estrogen) was just reduced, requiring another boost in thyroid med. dose.  These issues are definitely a consideration; but not the whole story.  Let me ask, when you speak of Celiac pain, it seems you mostly describe joint pain.  My pain is literally everywhere, not just bones.  My hair might be the only thing that does not hurt.  Does this sound familiar to you?  I had one such major pain "episode" right before my Celiac diagnosis (2010) that lasted over a year; and another now (2015).  The first pain episode was worse and it did end--till now.

[manasota]

I forgot to mention that part of my exercise regimen includes  doing a 30 minute dance DVD with Jane Fonda at least every other day.  I have gotten better over these 5 1/2 years gluten free.  Not as much or as quick as I'd hoped, though.  Let me ask, in regard to eye issues, I can't find anything on this forum about people feeling like "glue" is coming out of their tear ducts.  Intermittently, I have profuse stuff that is sticky and itchy coming out of my tear ducts.  It is thick and opaque and sticks to my eyeglasses.  The ophthalmologist says I simply have dry eye and it's an abundance of tears.  Does NOT feel like tears to me.  Very, very irritating.  Anyone familiar with this? I also have itchy bumps under my eyes.  I've had these bumps for years; and now, suddenly, they are going way!

[caro7]

I was diagnosed at age 70, I had problems for 47 years, iam now 72 and feeling much better,I do work out as much as I can, I go everyday to the gym but sometimes just do the bikes or treadmill. If I am under stress I feel very tired and will rest as much as need be.(right now I am feeling off. My mother just died in her 90's).  I wonder if you might be having trouble with polymyalgia..I know that can cause pain all over...But for sure keep working on finding a solution.....Hoping you will feel better soon. I know it is a struggle.

[RMJ]

Hi,

Are your celiac antibodies now normal? Or have you had a repeat endoscopy that is normal? That could help to tell if you're better from the celiac point of view, or if gluten is sneaking in and preventing your recovery.

[Xiao Bai]

I am 69 and was diagnosed 5 years ago, after an acute onset of extreme gastro issues about a year earlier. I've been gluten-free since then, but still have persistent gastro issues, though not as bad as before. However, I am able to work, and actually have a pretty difficult job in another country. I still have B-12 deficiency and anemia, which makes me more tired. But I can work. I will say, however, that fortunately I did not have your other health issues (breat cancer and Graves). But as for celiac, yes, it is definitely possible to recover enough to work, even at a rather advanced age.

Best of luck to you in finding a good job that is manageable despite the fact that you may never feel as good as you did at one time. Many of us in our sixties and later do not want to stop working, or need to work for financial reasons.

[manasota]

Many, many thanks to those of you who took the time to read my questions and write answers!  It really helps to know that others deal with these issues too.  It is especially helpful to me to hear from those in their "seasoned" years who have recovered enough to work!  I feel an "injection" of hope!  I send hugs and love to you all.

 

Regarding the question about testing my antibodies again or having another endoscopy, I have asked both my internist and my GI doc about this.  They both consider this to not be helpful for me.  I'm thinking it's because they've heard me speak at length about all the efforts and precautions I take to be gluten free.  Also, I imagine, they share our frustration about nobody being truly able to be totally gluten free in the USA.

 

In response to the comment about my possibly having additional autoimmune disorders, I have discussed this with my internist.  He is of the opinion that I am still healing from the Celiac disease.  Do you know of a particular specialist that would deal exclusively with autoimmune issues?  I do not.

 

I do know that I am healing every single day.  I can tell by the reduction in symptoms (GI, skin, fingernails, hair, torso "moles", facial blemishes, rashes, brain fog, itching, gums, etc.)  It is just so frustrating to have lingering pain and overwhelming fatigue.  I will do my best to remain patient.

 

Hugs and love to you all!

[kareng]

Many, many thanks to those of you who took the time to read my questions and write answers!  It really helps to know that others deal with these issues too.  It is especially helpful to me to hear from those in their "seasoned" years who have recovered enough to work!  I feel an "injection" of hope!  I send hugs and love to you all.

 

Regarding the question about testing my antibodies again or having another endoscopy, I have asked both my internist and my GI doc about this.  They both consider this to not be helpful for me.  I'm thinking it's because they've heard me speak at length about all the efforts and precautions I take to be gluten free.  Also, I imagine, they share our frustration about nobody being truly able to be totally gluten free in the USA.

 

In response to the comment about my possibly having additional autoimmune disorders, I have discussed this with my internist.  He is of the opinion that I am still healing from the Celiac disease.  Do you know of a particular specialist that would deal exclusively with autoimmune issues?  I do not.

 

I do know that I am healing every single day.  I can tell by the reduction in symptoms (GI, skin, fingernails, hair, torso "moles", facial blemishes, rashes, brain fog, itching, gums, etc.)  It is just so frustrating to have lingering pain and overwhelming fatigue.  I will do my best to remain patient.

 

Hugs and love to you all!

 

 

Follow up testing is recommended/standard of care for Celiac Disease.  If your antibodies are still high, it might tell you something.  IF they are great, that might tell you something, too.

 

"How often should follow-up testing occur?

New celiacs should receive follow-up testing twice in the first year after their diagnosis. The first appointment should occur 3-6 months after the diagnosis, and the second should occur after 1 year on a gluten-free diet. After that, a celiac should receive follow-up testing on a yearly basis. We recommend checking both tTG and DGP (Deamidated gliadin peptides) at each screening."

 

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[manasota]

Thank you for this info!  During the first year of two of being gluten free, they tested the tTg.  If I remember correctly, my highest level was only 63 and I never did get it below 20.  i think 20 is normal?  Anyway, I will pursue this as you suggest!  Thank you!

[Gemini]

manasota........I just wanted to make a couple of comments.  I was diagnosed at 46 and probably had Celiac since I was a very young child, due to my symptoms and history.  I was a classic Celiac and was extremely sick and malnourished at diagnosis.  I also have 3 other AI diseases that are linked to Celiac Disease.  I have been gluten-free for 10 years and am now better than I was in my 30's.  I work full time and with my commute, it's a 50 hour work week.  I go to the gym and work out with a personal trainer 2x per week, after work, because I also have osteoporosis from going so long without a diagnosis of Celiac. 

 

What I have learned is that healing is continual.  It occurs in small increments over a long period of time.  I always had trouble digesting fats, due to pancreatic insufficiency.  Even 7 years after going gluten-free, my cholesterol was always lowish....never going above 165.  It originally was 125 and that is a clue for malabsorption because no one has a cholersterol that low unless they are sick or on meds. This past spring I had a cardiac profile done (blood work) and laughed because my cholesterol, after 10 years gluten-free, was 200!  Not worried about it because the rise was all in my good cholesterol.  That number was originally 25 and I have it up to 82.  So.....you see, sometimes it takes quite a while before we older model humans really start to heal but I believe it can happen.  I now am officially absorbing my fats!

 

As for your body wide pain, that is somewhat common for us.  I did not have that problem but know many others who do and that is the pain that can take a while to leave or improve.  The neuro symptoms seem to be the last to heal. But I think that those who suffer from the constant pain have a tougher time trying to get their life back to normal and be active again as it directly impacts that. Do not give up hope because that symptom may yet improve. It has in others.

 

When you have your antibodies checked, it is very important to base dietary compliance on the DGP test and not the tTg.  The tTg can be elevated from other autoimmune problems and why doctors continue to make this mistake is beyond me.  The tTg is for intestinal damage and the DGP is for reaction to gluten ingestion.

It is good to do both and will give a more complete picture of what is going on.  Your Graves Disease would be one of them which elevates tTg.  I have Hashi's thyroid disease myself.

 

One last thing.......it is not difficult in the US to be completely gluten free. At least gluten free enough where you heal and become mostly or completely symptom free.  There is no way to test for a zero with gluten consumption.  When you re-test antibodies, the DGP should be as low as possible in the range given on the lab test.  That is the important one to concentrate on.  On all of my tests done since diagnosis, my DGP or the older version of testing called AGA IgA/IgG, have always been about a 2 or less.  That is considered as good as it gets for us!

 

I would ask them to do repeat blood work, a full Celiac panel, to see what is going on and then maybe obtain another endoscopy, if you are up to it.  Once you ascertain that you are not ingesting gluten, then what you have is probably just inflammation that is a bit stubborn and may take awhile longer before things get better.  The main goal for us is reduce inflammation so blood work to check inflammatory markers is a must when you are older.  I would also imagine that if you underwent treatment for breast cancer, that would impact healing a bit.  That is a lot to go through in a 5 year time period and I am sorry that you are still suffering.  But never give up on healing

because it can happen.  You have had a lot on your plate so you may have to give it more time than others.  Walking is great for exercise and clearing the head and you can go at your own pace.

 

Best of luck to you!

 

Ok...so that was more than a couple of comments......

[manasota]

Gemini, thank you so much for reading my story and offering so many suggestions.  Yours is a response I will read many times.  I will take every one of your suggestions to heart.  Thanks especially for the support and encouragement.

 

It's so "funny" about the cholesterol levels.  When I was about 45 yo, I was working in a hospital and took advantage of the annual bloodwork offered to employees.  The infectious disease specialist (who was the designated MD who interpreted our lab values) literally raved about my low cholesterol level of 108!  It would have been nice if he had questioned it instead of praising me.  My department director used to quiz me as to whether I was anorexic due to my weight never going over 105 lbs.  Celiac never occurred to me--or them, I guess.  At my sickest, my weight was 90 lbs.  Finally, now, it is about 105 and rising!  YEA!

 

Again, thanks so much for your input and experiences.

[mamaw]

You got  some great  advice.  have you  had a total blood  work done  in the past  year  to see  it  you are lacking  in  something? Have  you tried  B-12  injections.Gallbadder  scan?  I  found  those  things  helped  me get  answers to my health.

hope  you  find  comfort soon.

[manasota]

Yes, I've had lots of bloodwork, including in the past year.  My B12 is normal/high; so MD won't be giving B12 injections.  I do have antibodies to my parietal cells and an endocrinologist said I would definitely need B12 injections sometime.  My current internist says when my B12 gets low, he'll treat with oral B12 in very high doses.  He sates that he has lots of experience with high oral doses working so injections are not needed.  It's a mystery to me how that could work.

 

I don't know anything about a Gallbladder scan.  Guess I'll look into that.  

 

Thanks for the suggestions and for the encouragement!

[Gemini]

Gemini, thank you so much for reading my story and offering so many suggestions.  Yours is a response I will read many times.  I will take every one of your suggestions to heart.  Thanks especially for the support and encouragement.

 

It's so "funny" about the cholesterol levels.  When I was about 45 yo, I was working in a hospital and took advantage of the annual bloodwork offered to employees.  The infectious disease specialist (who was the designated MD who interpreted our lab values) literally raved about my low cholesterol level of 108!  It would have been nice if he had questioned it instead of praising me.  My department director used to quiz me as to whether I was anorexic due to my weight never going over 105 lbs.  Celiac never occurred to me--or them, I guess.  At my sickest, my weight was 90 lbs.  Finally, now, it is about 105 and rising!  YEA!

 

Again, thanks so much for your input and experiences.

We are more alike than you know.  My top weight was always 105 pounds also!  At 5' 4" tall (or short, as I like to say), I ate like a lumberjack and never got my weight up beyond that.  When I hit the wall with Celiac Disease and woke up one morning to horrific diarhea and vomiting, I thought I had food poisoning.  I proceeded to lose 7 pounds over the next 5 days and my lowest weight that I recorded was 92 pounds.  It might have gone lower but I stopped weighing myself.

 

All I ever heard when I did actually go to the doctors was how lucky I was to have such a great metabolism!  Yeah, right......I looked like I was anorexic but apparently, that didn't trip any doctor radar.  I was continually anemic and had low cholesterol...which, again, was applauded by the medical profession. The low cholesterol, not the anemia......   There is something incredibly wrong when I figure out my disease by contacting Dr. Google and asked for the blood work on an emergency basis when my weight plummets to dangerous levels.     I failed all the tests by huge numbers and my new, gluten-free life began.  I now weigh a heavy 112 pounds!     I feel good at this weight too so you see, you will gain weight over time.

 

Just remember that all disease states start with inflammation so that is my goal....to decrease inflammation.  My ANA has come down by quite a bit, which I know is just a general test for inflammation but it is way down!  Just stay strictly gluten-free and watch where you get your processed gluten-free food from.  I prefer certified gluten-free companies but will occasionally trust a shared facility place if they do a good job of keeping things seperate and clean. But I do eat some processed stuff because I work out in the gym and you need some carbs for that.

 

Hang in there, lady, and use a big stick to beat back those disease states!    Take no prisoners......

[manasota]

Gemini,  that's quite a story you have.  It is so very nice to not feel so all alone in the world!  Sounds like we're about the same size.  It is so good to know there is still hope for me.

 

My ANA's never showed as elevated on any tests; but I am well aware of the devil inflammation.  I am so sick of being sick that I only eat fresh, whole food that I make in my kitchen.  It's exhausting and the only reason I can do this is because I'm not working now.  No grains, sugar, soy, caffeine, chocolate, preservatives, food dyes, etc.  Not much fun, but I'm hoping it will pay off.  Actually, it already has paid off. I have had lots of healing--just not enough.   I also practice daily meditation and yoga in efforts to control  stress and decrease inflammation.  I can't think of anything else proactive to do.  i will have my tTg and DGP checked, T4 & TSH (takes 3 months to register after changes).

 

I'm hoping to be much better by The New YEAR.  HA!  I'm always hoping to be better by the next New Year.  One of these years, I WILL BE BETTER!  Thanks for the support.

[notme]

obviously, jane fonda is making you sick hahaha j/k!  

 

gem's story and mine are very parallel, so, welcome to the skinny girl's club lolz - i am 52, been gluten-free for 5 years (hey, my annibirthary of finally getting diagnosed is coming up soon!)  still struggling to keep weight on.  (haha yeah, i hate the scale.  surely i must weigh more than that!!!)  and, like you, i have not been working - my profession is fast paced and stressful and i miss it so much.... i'm too nervous that i would skip my (many) meals per day if i went back.  maybe someday...........  maybe not.  maybe i'll do something different (that i don't care as much about  )

 

i still have good days and bad days (i know what you mean about 'paying for it' when i overdo it)  and my doc has me on mega vitamin D supplements, but my b12 is good (?) go figure...  haha gem, my cholesterol is up now.  i was the poster child for high 'good' cholesterol and low 'bad' cholesterol.  i haven't been sick in four years - me, who had pneumonia every year like clockwork - i don't even catch the flu or not even the sniffles, nowadays.  the neuro issues, yeah, the last issues to leave.  hang in there!!!  it's hard to be patient, i know, and also know the feeling like i have wasted so much time being sick BUT NOW THAT'S OVER and i'm not wasting anymore time  

[manasota]

notme!

 

You are too funny!  It does help to have a sense of humor. 

 

Do either of you have a "Buddha Belly"?  I have one most of the time now.  Is that always a sign of gluten ingestion?

 

Man, you are right on when you say you feel like you've wasted so much time being sick.  I fear my lifetime will run out while I'm waiting/working so hard to get well.  I fear all my efforts will be wasted.  I'm trying to enjoy each day as it comes the best that I can.  I guess all any of us can do is their best.  The encouragement from this site does help.  Thank you.