I got WELL!!

[manasota]

I'll probably regret posting this; but here goes anyway.  For those of you who believe that they are "back to normal" or "feeling good" or "feeling well", can you please tell us of your success?  It would help me (and I think others) to know that some Celiacs actually regain a healthful life again.  Reading on this site frequently leaves me sad and thinking nobody ever gets well.  It would be reassuring to know SOMEONE succeeds!

If possible, can you identify the LAST thing you changed right before you "felt well again"?

 

[Darren]

I'm recently diagnosed a few months ago. Celiac became active 1-2 years prior to that because I became anemic which is how it was eventually figured out. I was always active but started feeling tired etc from the anemia. After only two months of being gluten-free my iron is back to normal range and I feel perfectly fine, back to training again no problems at all. I do marathons and tri's and I don't see any issues being celiac and continuing to do so. I actually ran my last marathon while anemic without knowing it at the time.  My symptoms were mild compared to most but the damage to my intestines was done as shown through biopsy. It's now 4 months post diagnosis and I'm fine.  I am fully confident I'll be fully healed or close to it when in have a follow up biopsy in a year. So yes, some of us get better and that includes "above average" active folks like me. So don't worry too much just make the adjustments and live a healthy active lifestyle and all should be just fine!

[kareng]

You do get a skewed perspective on this forum.  We get lots of people that may not actually have an issue with gluten,  or have multiple issues, seeking help.  These people may not get "well" while they are posting.    Most people who are feeling better and have the whole gluten-free process worked out don't post anymore.  It is just the nature of these types of sites.  The vast majority of people who have been diagnosed with  Celiac, for a few years,  are living a "normal" life and don't have ongoing issues related to Celiac. 

 

 

[squirmingitch]

I got well! I am gluten free for 4 years now & feel sooooooooooooooooooooooooo much better. I don't even think I can name all the symptoms I had & they all resolved. I'll name as many as I can think of at the moment (I always forget some & after I post I think DRAT! I forgot this & this & this). No more migraines -- in fact no headaches at all. BP is back to cool, calm & collected. My muscle wasting was bad, real bad & I am strong again -- I think I will get stronger yet but it does take time to build back up. Excruciatingly severe muscle & joint pain is gone and in the year prior to dx I was so bad off I thought I would be permanently in a wheelchair within a few months. No more belching, no more indigestion, no more BLOAT. No more gut cramps, gas or bathroom issues. No more fatigue. NO MORE CELIAC RASH (DH). No more rage. No more hot flashes. No more dizziness. No more brain fog. 

People get well and you will too. Believe it. Healing happens!

 

Karen is right that a lot of people move on when they get the diet down & begin healing. They don't come back & tell of their success. Some of us hang around to "pay it forward" & help others like we were helped when we were newbies. One day I will invariably move on.

[manasota]

Thank you, thank you, thank you for posting your experience!!  I fear I was contemplating giving up--sort of.  Giving up that my symptoms might still abate.  I'm 6 years gluten free and lots of stuff has gotten better--but mostly the stuff I really don't care much about (hair, skin).  I long for the day the joint &  muscle pain, BLOAT, abdominal cramps, neuropathy are a distant memory (fingers crossed).  The pain IS less; but still a major problem.  Fatigue still a major problem. Gut cramps.  Actually, the neuropathy is worse.  Go figure.

I'm thinking I need to "give up" waiting & hoping to get well.  Reduce expectations to just trying to cope the best I can  with what I've "got".  Of course, keep eating well, exercising, supplementing, meditating.  In short, just keep going.  Not what I'd hoped.  I'm finding it hard (or impossible) to just accept the reality I have now.

I'm worried that since I'm 6 years gluten free (verified by testing)...this may be it.  I must say, however, it just does NOT make sense to me that as long as I"m alive, I still can't keep healing.  I'll go to my grave believing that "where there is life, there is healing".

So...I guess my major problem is the war inside myself.  Fight like hell versus give up & accept the current reality.  It is this war that is my major problem--not the Celiac--not being gluten free.  This is the war that I find exhausting.  Maddening even.

[squirmingitch]

I understand your frustration manasota. Personally, I will say to you to just take it one day at a time. Stop dwelling on it. Take each day as an individual day and don't go into it expecting any particular thing to happen. The war you are waging is stressing you to the max it seems and that alone has a profound effect on overall health. I agree that "where there is life, there is healing" but I think maybe you're holding yourself back by focusing on how much you have not healed.  Just breathe, get up every day & don't think about the ways in which you have not healed. You said yourself it is exhausting and maddening so give yourself a break. Easy for me to say???? My hubs is like you so I know exactly what you're doing to yourself. You're chasing your tail. I say this with all good intentions and to help you. ((((((((((HUGS))))))))))))

[manasota]

Squirmingitch, YOU ARE ABSOLUTELY RIGHT!!  ABSOLUTELY RIGHT!!

I am going to print what you said (as soon as we replace our printer that just now broke-HA!), and literally post it on my frig!  I can see that when I "beat myself up", it also takes a huge toll on my husband.  He would do anything to help me.  I got VERY lucky in the husband department.  He's the best thing that ever happened to me.  I'm so lucky.

It will be right next to the letter from my GI doc that says I am gluten free and healing (and, to me, reads this is NOT my fault)!

I will never be able to thank you enough.  Never.  I cried when I read your post that said "I got well".  It made me soooooooo happy!  I take great joy in anybody's success.  Joy is a wonderful thing.  Thank you.

[squirmingitch]

Awwwwwwwwwwww, you're welcome. I'm glad I could shed some light. Now you have me crying touched, happy tears.

[frieze]

if i were you... i would try an elimination diet...

[manasota]

Frieze, thanks for your suggestion.  Been there.  Done that.  I've tried eliminating everything other than water!    I know everyone says to eliminate things till symptoms go away.  My symptoms got better but never went away.

My current approach is to add stuff back and hope the new variety will be helpful.  It can't hurt (as long as symptoms don't get worse).

ONward and upward!

[icelandgirl]

Hi Manasota,

I'm sorry to hear of your ongoing struggles... (((hugs))).  I was diagnosed almost 2 years ago and I would say that although I'm not where I'd like to be, so much has improved.

Have you had your thyroid fully tested, not just TSH?  I say that because many of us on the board have thyroid issues as well.  I found that getting my thyroid levels dialed in has helped with a lot of symptoms, including fatigue, aches and peripheral neuropathy.   The thyroid impacts every part of your body and if your levels aren't in the optimal range you can feel awful.

I had terrible issues with bloating and discomfort still 6 months into my diagnosis even though I knew I was gluten free.  I started looking into additives in food.  I found that inulin (also known as chicory root fiber ) and carageenan  caused bloating and other issues for some.  Inulin was in my probiotic at the time and carageenan was in my almond milk.  When I eliminated those 2, my bloating issue went away.  It was such a relief as I always felt as if there was an inflated balloon inside of me.

I hope some of that helps and that you continue to feel better.

[manasota]

Icelandgirl,

Thank you so much for your kind words and suggestions!

Yes, the thyroid!  I keep forgetting about the thyroid.  And I do have Graves Disease (diagnosed 2 years before the Celiac).  They regularly test my TSH and T4.  However, it has been years since they tested my T3.  Maybe I should have T3 tested?  Do you know of any other thyroid tests?

By your suggestion, I ran and checked my food and supplements for inulin and carrageenan.  Not found.  Not too surprising, I guess, since I only eat whole foods, nothing processed.  I was hoping to find them in the supplements.  No go.

Regardless, your words and efforts have made me feel better.  ;-)

thanks again

[icelandgirl]

You're very welcome.

For thyroid you should definitely have TSH, Free T3 and Free T4...not total on those last 2, the free values tell what's available for your body to use.  Also I would do TPOAB and TgAb...you could have Hashimotos as well.  Make sure they give you your actual results, not just you're thyroid is fine.  Most people feel best with their TSH close to 1, but a Dr may tell you that you're fine with it at 4.4.  I feel awful at that level.  

Besides thyroid, have you had your D, B12 and ferritin tested?  Low values of any of those can cause fatigue.  I'm still working on getting my D and ferritin up...it's taking a while.

Trying to think of anything else...oh a food diary if you don't do one already, might be able to tell you if a specific food causes issues.  For me, I can't do oats, broccoli, cauliflower, cabbage or brussel  sprouts unless I want to be in digestive pain.  I also have to avoid soy but have been able to add back in some dairy.

I really hope you get something figured out...feeling bad is not fun!

[manasota]

Thanks for sharing.  You have made some great suggestions.  I plan to ask about the tests I haven't had at my  2 appointments next month (1 with GI and 1 with internist).  I think I do remember feeling better when I also took Cytomel (T3) in addition to levothyroxine.  I had completely forgotten about that!  Duh--Celiac brain.  (It's tough to be "on your toes" and alert and thorough when you feel crappy.)  Also, I used to feel better on Levoxyl than I do now on Tirosint.  Maybe I should change back.  Tirosint only has 4 ingredients and it's tempting from a gluten perspective, for less chance of cross-contamination.

I agree that a food diary is invaluable!  I use mine frequently for tips on what to do--- or not do!  HA!

Gosh, there can be sooooooo much suffering with Celiac (something docs never mention).  There is just so much to think about.  Exhausting.  I know Squirmingitch thinks I should give it a rest.  I know she's right.  In fact, I've spent much of the day drawing--instead of baking.  Very nice.  (I'm shutting my computer off now.  HA!)

Here's hoping we all get a lot better in 2016!

[squirmingitch]

You won't read this until you turn that computer back on but I sure am glad you turned it off! Yaaaaaaaaaaaaay!

I envy your being able to draw. I have zero talent in that artistic department.

 

WELLNESS IN 2016!!!!!!!!!!!!!!!!!

[cyclinglady]

I am a little late to the game, but I can honestly say that I am much better than when I was diagnosed back in March 2013.  My anemia resolved quickly which was my main symptom.  My learning curve to the gluten-free diet was not steep since my husband had been gluten-free for 12 years and I managed to keep him safe (though I am still learning something new about celiac disease everyday it seems!)  I felt really well after a year (fractures healed) but I felt best when I went grain free (Low Carb, High Fat Diet) to combat diabetes.  Am I back to where I was in my 40's?  No!  I am struggling with post menopausal symptoms and tend to go on and off hormones as needed.  But my hashi's has been stable now for two years (it was wildly swinging from hypo to hyper prior to my celiac disease dx), my bone density is stable, no fractures, my blood glucose levels are considered non-diabetic (but if I eat lots of carbs all bets are off!)  My intolerances have mostly resolved and my latest issue of hives, rashes (not dh) and tummy aches seem to have calmed down (I think this was triggered by my July unsourced glutening but confirmed by a DGP iga test).  

I ride my bike 40 to 50 miles on the weekend, teach a few exercises classes for fun, run three miles a few times a week and walk my dog every single day.  I feel much better!  I work with my hubby from home and am in Girl Scouts, Water Polo and Marching Band Boosters and belong to an Orchestra.   Things are going pretty well.....as long as I am on HRT!  How long will this last?  Who knows?  I just have to take one day at a time!  

[icelandgirl]

4 hours ago, manasota said:

Thanks for sharing.  You have made some great suggestions.  I plan to ask about the tests I haven't had at my  2 appointments next month (1 with GI and 1 with internist).  I think I do remember feeling better when I also took Cytomel (T3) in addition to levothyroxine.  I had completely forgotten about that!  Duh--Celiac brain.  (It's tough to be "on your toes" and alert and thorough when you feel crappy.)  Also, I used to feel better on Levoxyl than I do now on Tirosint.  Maybe I should change back.  Tirosint only has 4 ingredients and it's tempting from a gluten perspective, for less chance of cross-contamination.

I agree that a food diary is invaluable!  I use mine frequently for tips on what to do--- or not do!  HA!

Gosh, there can be sooooooo much suffering with Celiac (something docs never mention).  There is just so much to think about.  Exhausting.  I know Squirmingitch thinks I should give it a rest.  I know she's right.  In fact, I've spent much of the day drawing--instead of baking.  Very nice.  (I'm shutting my computer off now.  HA!)

Here's hoping we all get a lot better in 2016!

I feel much better on brand name Levoxyl than I did on generic...so maybe try going back.

I really think that Dr's don't know enough.  All I was told was, "just stop eating gluten and you'll feel better."  And then after 6 months of not feeling better, " I don't understand  why you don't feel better.  Most people feel better as soon as they stop eating gluten."  That's what's so great about this board...people here haven't just learned about the disease in a textbook.  They've lived it and are living it and will get where you are coming from...that in itself has been a huge help to me.

Enjoy your time with your computer off 

[manasota]

Many thanks to all respondents!  I admire your collective indomitable spirits!  (Cycling lady, do your friends call you E.B.?  Your pic should be in the dictionary after "Energizer Bunny"!)

I've been focusing on exercise (dance, weights, yoga, tai chi, meditation).  It is only during theses times that I actually feel GOOD!  Doesn't last long; but I enjoy it while it does!  Figure I need this just as much as I need to be gluten free.  ;-)

Thanks for all the kind words and tips.  I'm a "work in progress".  ;-)

[Posterboy]

manasota,

When I first was diagnosed with Celaic disease I was beginning to have Thyroid problems.  But I began studying up fortifying myself with knowledge which led me to Chris Kresser's site where he has a free book on Thyroid disorders it might be worth downloading it and reading it (I have not) but read some of his blog posts.

I think of it like one of my fellow blogger's I follow Susan Hughes Healthy by Nature quoting when she says "I find the human body to be pretty amazing. It is capable of healing itself when given the proper tools to do so. These “tools” include nutrients, thoughts, rest, among other things – all dependent, to a degree, on the unique needs of the individual. Many times proof of this incredible healing capacity of the body is backed only by anecdotal evidence, which, no matter how valid, lacks the respect that formal research supporting this notion would receive."

With that in mind consider what I have learned on my journey is all I ask. I will share what has made me feel better.

Chris Kresser (I don't remember why) says selenium first then Iodine for thyroid problems and a lot of these fatigue issues can be tied to your thyroid.

Having said that my thyroid is better by that I mean I no longer need meds for my thyroid and my chronic fatigue is better.

I find two or three brazil nuts a day will give you most of the selenium your thyrorid needs.  Find a Kelp supplement for a good source of Iodine or just start putting idoine (betadine) from the drug store on your legs each night until it stains you in the morning then you know your body has enough Iodine since it readily absorbed when it lingers on the skin for more than 12 hours you have enough iodine.

For the Chronic Fatigue I can not over emphasize Magnesium CITRATE in divided doses 3 to 4 times (with each meal and at bed time).  Great book on the subject called "the Magnesium Miracle".  Make sure it is a 100% Citrate though or your body will have time absorbing it.

Your energy will really perk up.  Muscle cramps will improve.  Restful dreams (if you can't remember when you last dreamed) will come vividly.

Search for the posterboy on this site if you want to read all my posts and see my profile if you want to know what other vitamin's or minerals I have taken to help me "get well".

Good luck on your journey.  Read the topic "Still Sick 1 year after diagnosis" for  a summary of other things I have done by the poster ryan7194.

Provided here for easy reference

**** This is not medical advice and should not be considered such. Results may vary. Always consult your doctor before making any changes to your medical regimen.

2 Timothy 2:7 and 2 Cor 1: 3,4

Posterboy,

[manasota]

Posterboy,

Many, many thanks for providing such complete information.  Your efforts won't go to waste.  I will look into each item you mentioned.

Not sure the iodine is an issue as I no longer have a thyroid.  And too much iodine can aggravate my intermittent rashes.  (Never was tested for DH.  Didn't see the point as I was already diagnosed with Celiac.)

Thanks again!

[manasota]

Update on my progress:

1.  By thorough and consistent evaluation of my food diary (every item ingested for 6 years); I've finally figured out that both dairy and nightshades cause me PAIN!  I had tried eliminating these previously; but it was no help.  I tried again anyway...and IT WORKED!!  Maybe because I'm healthier now?  Never was lactose intolerant; but BOTH these items cause me PAIN!  All over, wish-I-were-dead PAIN!

2.  Just completed 2 courses of Xifaxin.  One in November and one in February.  The first course helped some with the Buddha Belly.  This second course helped a lot!  Fingers crossed that things will only continue to improve.  (I actually think it may be helping reduce the fatigue!  But I won't mention it as I don't want to jinx it!)

3.  Added back rice.  Had been grain-free for 3 years.  Seems fine and maybe even beneficial.  I'm pursuing adding more variety to my diet.  Looking at amaranth and buckwheat.  Plan to discuss diet with nutritionist after my next GI appt.  to get tips on this.  (Had to postpone this appt. due to bad headcold--first in many years!)

4.  Plan to discuss changing levothyroxine brand at next internist appt. in a couple weeks.  Currently taking Tirosint--and love it.  But...investigating other options like Levoxyl since I may have felt better on that.  Sadly, Pfizer was NOT helpful the last 2 times I called them to discuss gluten content/contamination.  Mylan generic was VERY helpful!  Choice to be determined.  Goal is to reduce fatigue.

5.  Continuing with exercise, meditation, drawing, etc.  Paying attention to mindset and emotional calm.  Optimism is my friend.

6.  On a humorous note, my hairline continues to advance!  I always had the highest of foreheads.  Ha!  Now my hairline is moving, from all directions, closer to my eyes!  i actually have developed a widow's peak!  This is too funny.  Sixty-six years old and my hairline keeps getting thicker and more extensive!  Mother Nature toys with me!

HAPPY VALENTINE'S DAY to everyone!!   Remember to love yourself!

[squirmingitch]

It sounds like things are looking up for you. Happy dance, happy dance!

Happy Valentines Day!

[icelandgirl]

Wonderful!  I've found my food diary to be so helpful in figuring out things.  So glad for you that you figured this out. 

[manasota]

Awwwww thanks you guys!  I am doing the Happy Dance!

And fingers crossed for more answers...

[rockstarkate]

I felt better almost immediately. I had my endoscopy then started the gluten-free diet before I got the results. Within 3 days I felt noticeably different and have been feeling better and better continuously ever since. When I got my results, that yes I have celiac, I was not surprised. I could kick myself for never trying gluten-free before! But I was very skeptical.

I think for myself, I have tried LOTS of diets in my life, including "clean eating" so I am an old hat at reading food labels and thinking about food. I keep track of everything I eat in case I feel bad (it has happened to me twice in the 5 months I've been gluten-free). I write it down in a little journal and take notes about how I feel. If something makes me feel bad, I don't eat it again. I'm also still REALLY nervous to eat out, so I have mostly avoided it. I found one 100% gluten-free restaurant, but other than that, I don't eat out. I try to stay away from gluten-free labeled foods, and stick to things that would be gluten-free naturally. 

gluten-free is the hardest diet I have ever had to be on and I am still in shock that I have to stick with it for life, and still trying to figure out how some things will work, like travelling. But I am determined to feel good. My fatigue is gone, my stomach usually feels great, no more heartburn, I can think so clearly and work really fast. I also quit alcohol completely a month after I got diagnosed, and I'm sure that's another reason I feel so good now. I didn't drink a lot, but I realized that I felt really bad every time I had a glass of any alcoholic beverage.

I finally feel like I have the energy to be active like I want to be and I'm getting back my fitness and having fun doing it. I even lost weight, which I have never in my life without trying really hard. 

Overall I just cannot believe how good I feel now and I am SO GLAD I got diagnosed at 38 before it got any worse. Looking back, I think I have been dealing with symptoms for a very long time, but I just thought it was how I was. 

I know I am very lucky, and most people do not experience it this way, and I feel really grateful for it. Hope others can find their way to feeling good again. Never give up!