When To Give Up On Symptoms Improving On The gluten-free Diet?

[nvsmom]

This is mostly aimed at my veteran celiac friends around the forum. You lovely people know who you are.

 

When do I give up hoping that symptoms will improve on the gluten-free diet?

 

I've been gluten-free for over two years. I would think that should be long enough for things to get as good as they are going to get, although I am still hoping there is a chance things will continue to get better.

 

Background:

I have an almost useless thyroid that is being successfully treated. That could cause celiac like symptoms, and I am guessing it is still a factor in my health.  I also have another autoimmune blood disease but its treatment was successful and it is like it is in remission. Feel free to smack me on the back of the head with the obviousness of these if you think that is what holds my health back.

 

Overall, going gluten-free has been good for my health. I have less stomach aches and migraines. My hair is not as thin. And I no longer have C anymore. I really  thought I was finally well for close to a year but I did not realize that my improvements were caused by the hydrocortisone I was taking, until I had stopped taking it for a few months. Once the effects wore off, my symptoms came back in a rush - most noticeable was my arthralgia pain.  

 

My upper body pains came back hard along with mouth sores and some renewed hair loss. My hip pain, which was an annoyance while on the steroids, became much worse and is affecting my walking stride and my life.  I started getting stomach aches again (no bloating - it's different than before going gluten-free) and I get migraines again a few days a month (better than it was). I'm more tired but I expected that.  Even my plantar fasciitis came back to a lesser degree. 

 

Frustrating.  So frustrating to have those symptoms back even if it is not as bad (for the most part) as it was before.

 

I saw a rheumy over a year ago and they said my aches and pains was caused by celiac disease. I could tell she did not believe me when I told her I was sure I was gluten-free.    I have not accidentally glutened myself since about March of 2013, at least that I am aware of. I do not eat out at all - last time was a good year ago- and I prepare all my own food.  The main prepackaged foods I eat is Udi's bread and chocolate chips. (Mmmm, chocolate chips...) I am as sure as I can be that it's not gluten.

 

I know my tTG IgA levels were finally almost normal, a year ago, after I had been on the steroids for a month or so. I don't know what it is now. I am almost scared to find out.  LOL

 

So. Should I stop waiting for improvements? Assume it's caused by something else or that it was caused by celiac disease and it's permanent?  I'm leaning towards "it's something else" or "it's permanent" for my guess... I guess I'm looking for a kick in the @$$ to get myself back in to see the doctor...  I still don't like doctors.  LOL

 

Thanks

 

 

[Gemini]

Geez, Nicole..........this isn't fair. You know your stuff so it must be frustrating to have lingering symptoms. I am like you in that I have multiple autoimmune diseases and it did take me about 3 years to rid myself of the very last one. That was bone pain in my upper right leg. It was the only bone pain I had but it was bad. I was limping some days. It felt like it was my femur bone. Nothing was found to be wrong so I assumed it was celiac related....maybe neuro or a vitamin deficiency. It just went away for good, all on its own, around the 3 year mark. It has never come back.

I also have Hashi's and it sounds similar to yours. I am on 130 mg dose and if it gets the slightest bit low, I feel it with fatigue. It behaves itself most of the time so I would say it is successfully treated also. But you know low thyroid can produce the symptoms you describe. Are you able to keep it on a pretty even keel?

Is there the possibility that you have another food intolerance? I am wondering as you are having mouth sores and hair loss. You know that could be celiac, thyroid or another intolerance. Great when you have multiples, huh? Makes it even harder to figure out.

I think you need to keep track of your thyroid more often. I have my levels tested about 3 times a year now as it can vary depending upon what is going on in my life. You know with Hashi's it is not always stable.....even when you work hard to keep it that way. After swinging hypo to hyper about 5 years ago and then popping with shingles when I got run down, I am a little paranoid about my thyroid numbers.I would also have your celiac testing repeated, just to see what the numbers look like. As those 2 are your biggest concern, track the numbers. Don't give up on improvements, though. They can still happen after a long time. Has your Rheumy tested you for other AI diseases?

I know how you feel. I have to be feeling pretty bad to go to a doctor. Luckily, I do not need them as much. I go when I need to and that's it.

It can get tiring trying to manage numerous AI problems but I think a happy medium can be achieved and you should be able to live without that much pain. Unfortunately, it doesn't happen without work and it takes too long sometimes. I have to say that 9 years out is better than it was at 4-5 years out so improvement tends to continue slowly, over time.

Hang in there and don't despair! Two years may not be enough time, as hard as that is to hear. Especially when trying to heal from celiac and keep your thyroid happy.

[GF Lover]

Hi Nicole.

 

The lingering stuff drives me crazy too.  I have to agree with Gem on the thyroid issue.  This just happened to me.  I get my thyroid tested every 3 - 4 months.  During the last 8 months my thyroid climbed from 1.19 to 2.68 (something close to that.  It was way over 1 point higher.  My Doc increased my dosage slightly and what a difference it made!  Those symptoms of thyroid are sneaky and creep up and you don't even realize what it is.  Only 8 Weeks and it changed that much!  Definitely have it checks for often.  Also, When my immune system acts up for any reason, all other AI symptoms jump on board.  I always know when something else is going on just by AI symptoms and it's not gluten. Maybe a little more investigation is in order if your thyroid checks out. Some Docs think that if your number is in the normal range your "fine" but actually you have to find your own normal range where you feel the best.  My thyroid numbers are always in the normal range but not necessarily in "My" normal range.  Make sense?

 

Hang in there Nic.

 

Colleen

[IrishHeart]

Never, ever give up on symptom improvement! There are times when I realize that things that have plagued me for 20 years are lessened or gone (I'm just past the 3.5 year mark post DX) I had a 4- page symptom list, and I still find myself crossing off some things  that have  resolved once and a while.... It gives me joy. lol 

 

"Every year is a healing year", says my celiac doctor. I still have symptoms like muscle and joint pain and I am still working with a physical therapist/massagetherapist/weight trainer to get my muscles back, and I sometimes have bowel stuff or hair shedding at times.

 

But I have resumed riding a bike (something I could not do for years because of horrid hip, leg and back pain)...so you see, things can change!

I have never slept through the night in my entire life. Chronic insomnia, chronic pain---just not possible.

It took 3 years, but I can get nearly 6-7 straight hours now ... whoohoo!

 

I had to figure it out myself  but it was other intolerances that were causing lingering symptoms for me. (high histamine foods, soy,MSG, nitrates, blah blah blah) Again, my GI doc thinks those can resolve in time as well--that my gut is still healing and so, the enzymes that help with histamine regulation (produced in the gut) may still be impaired.

 

I never stop hoping things will improve. 

 

While hair shedding and face and scalp sores are related to the thyroid or to allergies, I do not have either of those, but I still have those symptoms from time to time. It is  mast cell dysregulation and if I remove the high histamine foods, the symptoms clear out. 

 

It is frustrating, i know and I empathize completely!! I just do not think 2 years is very long--- in terms of overall healing---and I think you should

most definitely have a chat with your GI doctor and make sure nothing else is going on. None of us are big fans of doctors, but let's face it, there are good ones out there and they can run some tests and rule out anything else that may be going on.

 

If nothing else, it may put your mind at ease and take some of the "darn it, is this as good as it gets?" thinking off the table.

 

Even though I have 3 other AI conditions, (OA, some weird connective tissue disorder the doctors can't pinpoint and the mast cell activation),  I just keep moving and that helps with lubing the joints and muscles and controlling the symptoms.

 

And I had several neuros tell my Gi doc and me that the constant burning nerve pain and paresthesia I had for 5 years might never go away. I was told I probably had fibromyalgia and to take drugs and learn to live with it. i said nope, nope, nope...and  I was told to get a "hoverround" because it would only get worse.....wrong, wrong and wrong....!

 

And every time I pedal my bike or perform yoga or lift weights, I am mentally giving them all the finger inside my head.  lol

 

I hope this helps. I really do "get this" part so well.  Many times I cried thinking "I just can't be like this for the rest of my life", but I simply refused to give in to the negative thinking and I eat cleanly, try to do things that make me happy and calm and I get some exercise and honestly, every year is better....just hang in there! 

 

Recovering from celiac--is the mother of all exercises in patience, that's for sure. 

[GFinDC]

Hi Nicole,

 

I don't think you should accept things as being done at 2 years.  I feel much better now than I did for the first 6 years of gluten-free.  I had to identify and eliminate various other foods as I went along.  Some didn't seem to show up right away but popped up after a few years gluten-free.  Either that or I was just really dumb for the first few years.  (Not saying that isn't the more likely scenario.)  Those other food intolerances beyond gluten can really play havoc on your well-being.

 

My most recent change I made that really helped my energy levels was to add more selenium to my my diet.  I feel better now than I have for the past 6 years, so I know things can improve.  And for me it was change in diet (beyond gluten) and thyroid supplements and selenium that made the big differences.  Although my stomach ulcer wouldn't go away no matter what I tried.  Until I prayed about it in Jesus name and it went away then.  Scared that ulcer right off.

 

So don't give up looking for improvements.  If your body is reacting to some food (other than gluten) and you are consuming it regularly it can be real bad for your health.  But you can change that by eating differently.

[kareng]

Hey, just a quick drive- by here.

On the mouth sores - try a toothpaste that is "√ No Sodium Lauryl/Laureth Sulfates". Helped my son with mouth sores. He uses Jason's or Biotene ( Colleen suggested that one and it seems to be easier to find). Might try a shampoo without that, too. Supposed to help hair loss?

[GottaSki]

Thanks IH for the heads up on this one!

 

Nicole -- Never, ever, ever -- did I say EVER -- give up on looking for answers.

 

I too still live with a lot of pain and still can't eat anything but fresh meat and veggies without some consequences, but I have improved and more importantly adjusted to make the most with my f$#%ed up body. 

 

For you it is even tougher because your children are still young and require the hands on mom every day without a break -- while I love my children beyond description during my worst days it was everything I could do to not scream at them for the most minor crap.

 

BTW...my pesky thyroid was not the reason for my issues at 2-3 years gluten-free, but did have some funky test results...it is now playing happily without thyroid meds...which is fantastic, but was completely frustrating when we thought it was the cause of my continued symptoms -- rather than simply a symptom of what was still malfunctioning in my digestive system.

 

HUGE HUGS>>>>you can get better -- just may take more of that stinkin' time -- sure wish doctors could write scrips for more of that stuff!!!

[dilettantesteph]

It's been almost 7 years for me.  I am still learning and improving.  Keep working on it.  I found digestive enzymes revealing.  That way I could tell better what was bothering me for malabsorption reasons and what might actually contain gluten.  Monitor your diet for nutrients and adjust as necessary.  Keep that food/symptom journal and keep trying things.  I realize that I've been far too impatient in the past and haven't waited long enough to see changes before making the next change.  I'm working on that.

 

Watch out for correlation does not necessarily mean causation.  That's a tough one.  Be patient.  Don't give up hope.  I hope you make some further improvements.

[1desperateladysaved]

I am just about 2 years into this two.  I still continue a feeling of great transition!  I heard once that you need 1 year for recovery for every 10 years sick.  I am not sure that is true or not, but it helped me make sense of my transitional feeling this far into it.  I need to give it another year at the least.  I still have longings like to get feeling back in my limbs, but am so glad to have left brain fog and fatigue behind.  I agree not to give up looking for answers.

 

Dee

[cyclinglady]

Nicole, what more can I add? Everyone has said it so well!

Do not give up! If I have learned anything from all this is patience (and I do not have much of it). Just when I think something has resolved, something else pops up.

Things have improved since my diagnosis at the end of March 2013. My anemia has resolved, my fractures healed, bones building (no pain in ribs and hips while lying down and I am taking that as a sign) and a calm thyroid. And I am back on my beloved bike.

Just want to add to the thyroid topic. I am taking 90 mg. of Armour daily and an extra 30 mg. on the weekends. It is working by keeping my levels at the proper place. Increase my daily dose and I run hyper. Alternating dosages or cutting pills might be an option for you.

My recent diabetes has been a blow too. I am on a LCHF diet and that is working great except all my food allergies and intolerances are not improving. So, that makes for a pretty restrictive diet. Do not discount new intolerances. I was one who had issues with Xantham Gum. I avoid it as much as possible now. Who knew that it would bother me and it gave me that "rock in my stomach" feeling --the same first symptom I get when i am exposed to gluten. It has never bother my husband ever!

Now, I have an abdominal anerysm (thanks, Dad) and I do not even have any other risks factors for that one. It is small, but now must be monitored. Just one more thing to deal with, but I put that one in the category of earthquakes -- just be prepared!

I wish there was something I could say that would be witty or inspirational. The ladies before me have said it well. I am thankful for this forum because each time I help someone, I help myself. It is a two-way street.

Hugs!

[icelandgirl]

Nicole...I'm one of the newer members of this board but had to respond. I started crying reading your post. Last week I asked my husband if I should just start accepting that I may never feel good. It's not want I want but I'm discouraged. I have children...youngest will be 3 next month...and I feel like I can't be the mom they need.

But reading your story and all of the great encouraging responses has helped me

So...Thank you for sharing it.

I'm sending you (((hugs))) and hoping that you find answers. You are such a positive light on this board.

[cristiana]

Well said, icelandgirl.  I hope things do get better for you Nicole and what encouraging responses for those of us whose health issues persist,  I think there are quite a few of us out here.  Thank you all for sharing.

[Gemini]

Keep the faith, Ladies. Keep learning all you can because that helps you to understand the process of healing. I wish it could be shortened but healing occurs whether you feel good or not. It just takes awhile for it all to come together and then you feel better.

[beth01]

I was bound and determined not to read this thread but curiosity killed me.  In some ways I wish I wouldn't have, I can't un see it. 

 

Gemini - thank you for your last comment, for some reason that alone made me feel a little better. 

 

I know it's going to be a long road, I really wish there was some way to speed the process. I think I am going to be eating chicken and mashed potatoes for a while.

[esgal]

Ok I am not a veteran, because I was diagnosed with Celiacs only two years ago. But I do want to share my story.

 

Summarized version is that I was having severe pain even with following the gluten free diet the first year, pain with everything I ate and even when I wouldn't eat. Went to Cleveland Clinic and dumped thousands of dollars into doctors who gave me drugs that didn't work. And painkillers were a joke for me. I was incredibly frustrated because I thought the CC was one of the best clinics in the US. At my wits end, knowing that drugs weren't going to cut it, I started going the natural route.

 

A friend recommended me to check out www.karenhurd.com who does phone consultations. She is a nutritionist in Wisconsin. Her methods and diet are very extreme but SO effective(likely because they are extreme). Honestly I went into it so dubious, thinking that this was going to be another highly acclaimed "fix" that wouldn't work. But I was desperate so I tried it, and six months later I started seeing results (it does take awhile, but it's so worth it). She's had incredible success stories from clients with arthritis and body pain like you have as well. Now a year later I am completely pain free in my gut with following her diet - NOTHING else worked for me, I also tried GAPS and SCD diets.

 

You owe it to your health to check her out - in fact if after looking around on her website and you are interested in considering it you can pm me your address I will send you her book of testimonials for free so you can read more about it and see if it feels right for you. It's called And They Said It Wasn't Possible. Initial consultation is like $95 and then after that it's only $44 so it really isn't that terribly expensive. One of the things she does for body aches/pain is frequent intake of soluble fiber (beans, psyllium husk, etc) to reduce inflammation, but you need to accompany that with her other suggestions.

 

Here's wishing you all the best!

[nvsmom]

Wow.  I am so grateful for all of your support. You bunch have me in tears with your well wishes, wisdom and advice.  Just an amazing bunch of people.  I consider myself extremely lucky knowing that you all care and take the time to give your support to me. I am truly very lucky.  

 

Thank you.

 

And wow... I was out for the day but I better get typing here...  LOL

[nvsmom]

Geez, Nicole..........this isn't fair. You know your stuff so it must be frustrating to have lingering symptoms. I am like you in that I have multiple autoimmune diseases and it did take me about 3 years to rid myself of the very last one. That was bone pain in my upper right leg. It was the only bone pain I had but it was bad. I was limping some days. It felt like it was my femur bone. Nothing was found to be wrong so I assumed it was celiac related....maybe neuro or a vitamin deficiency. It just went away for good, all on its own, around the 3 year mark. It has never come back.

I also have Hashi's and it sounds similar to yours. I am on 130 mg dose and if it gets the slightest bit low, I feel it with fatigue. It behaves itself most of the time so I would say it is successfully treated also. But you know low thyroid can produce the symptoms you describe. Are you able to keep it on a pretty even keel?

Is there the possibility that you have another food intolerance? I am wondering as you are having mouth sores and hair loss. You know that could be celiac, thyroid or another intolerance. Great when you have multiples, huh? Makes it even harder to figure out.

I think you need to keep track of your thyroid more often. I have my levels tested about 3 times a year now as it can vary depending upon what is going on in my life. You know with Hashi's it is not always stable.....even when you work hard to keep it that way. After swinging hypo to hyper about 5 years ago and then popping with shingles when I got run down, I am a little paranoid about my thyroid numbers.I would also have your celiac testing repeated, just to see what the numbers look like. As those 2 are your biggest concern, track the numbers. Don't give up on improvements, though. They can still happen after a long time. Has your Rheumy tested you for other AI diseases?

I know how you feel. I have to be feeling pretty bad to go to a doctor. Luckily, I do not need them as much. I go when I need to and that's it.

It can get tiring trying to manage numerous AI problems but I think a happy medium can be achieved and you should be able to live without that much pain. Unfortunately, it doesn't happen without work and it takes too long sometimes. I have to say that 9 years out is better than it was at 4-5 years out so improvement tends to continue slowly, over time.

Hang in there and don't despair! Two years may not be enough time, as hard as that is to hear. Especially when trying to heal from celiac and keep your thyroid happy.

 

Aw thanks.   It really does help knowing that others have gone through almost the same thing... It's good to know that I am NOT special.  LOL

 

My hip pain turns into something like a bone pain sometimes.  It radiates done my femur and into my knee, but usually it is in my groin to the side, and occasionally in the butt (but not sciatic pain - I have much experience with that).

 

It is reassuring to hear that your pain improved after three years I hope my upper body arthralgias do too. To be honest, it is better than some of my worst flare-ups, but it still hurts my hands to drive, and my shoulders often won't contort enough to get a sweat shirt on - it is better than it was once.  My hips worry me because that started after going gluten-free, about 5 months into the diet, that's the problem I fear is not celiac disease related.

 

You are probably right that I need to check my thyroid more. It has been about 8 months since my last check... I think. Yikes, I'm not even sure.  At my last appointment, everything was very good.  My free T's were at about 70% of my lab's normal range, and because I take Erfa's Thyroid (the Canadian equivalent to Armour), my TSH was suppressed at somewhere around 0.1.  I'm on 150mg of that per day, which is close to a full replacement dose for my size.

 

I really don't feel hypo. No coldness, not sluggish, no C, skin is not scaley or too rough. I have wondered if I am close to hyper because the mild shakes I've had for much of my 20's is a bit more than it used to be, especially when I wake up - it almost feels like my heart but when I take my pulse it s my usual rate.  I'm rambling... LOL  I went hyper once, and that was when I started on Thyroid and had too much - I don't feel hyper now a days.

 

It could well be another food intolerance. Dairy most likely. A couple of months ago I started adding dairy back to my life, and it seemed to be going well. Lately, I've had more (usually in, ahem, ice cream form) and my stomach is definitely acting up, even when it is a non-dairy meal but my stomach used to do that with gluten-free meals before I was diagnosed too.

 

I've cut dairy again this past week and it is a bit better, not all or mostly better, but my body is not the quickest to respond.

 

It's probably time to bring out the old food and symptoms journal again and simplify things back to the basics again. No fun, but neither is feeling poorly.

 

Thanks again.  

 

 

Hi Nicole.

 

The lingering stuff drives me crazy too.  I have to agree with Gem on the thyroid issue.  This just happened to me.  I get my thyroid tested every 3 - 4 months.  During the last 8 months my thyroid climbed from 1.19 to 2.68 (something close to that.  It was way over 1 point higher.  My Doc increased my dosage slightly and what a difference it made!  Those symptoms of thyroid are sneaky and creep up and you don't even realize what it is.  Only 8 Weeks and it changed that much!  Definitely have it checks for often.  Also, When my immune system acts up for any reason, all other AI symptoms jump on board.  I always know when something else is going on just by AI symptoms and it's not gluten. Maybe a little more investigation is in order if your thyroid checks out. Some Docs think that if your number is in the normal range your "fine" but actually you have to find your own normal range where you feel the best.  My thyroid numbers are always in the normal range but not necessarily in "My" normal range.  Make sense?

 

Hang in there Nic.

 

Colleen

 

I hear you about the "normal range", my OLD doctors insisted that anything below a 6 was perfectly fine.  I didn't feel better until my newer doctor started me on a med with T3, and my TSH was below a 1.  I completely agree that normal is not the same for everybody!  And I do agree that I should go back to the doctor... darn it.  

 

My immune system acts up in a pretty predictable way too.  First I get fluish, then tired, achy,migraines mouth sores and hair loss, increased joint pain and possibly stomach issues. It always starts the same way and lasts a few weeks to a few months. It's like my immune system all jumped on the bandwagon and decided to run a muck through my body.  LOL

 

 

Never, ever give up on symptom improvement! There are times when I realize that things that have plagued me for 20 years are lessened or gone (I'm just past the 3.5 year mark post DX) I had a 4- page symptom list, and I still find myself crossing off some things  that have  resolved once and a while.... It gives me joy. lol 

 

"Every year is a healing year", says my celiac doctor. I still have symptoms like muscle and joint pain and I am still working with a physical therapist/massagetherapist/weight trainer to get my muscles back, and I sometimes have bowel stuff or hair shedding at times.

 

But I have resumed riding a bike (something I could not do for years because of horrid hip, leg and back pain)...so you see, things can change!

I have never slept through the night in my entire life. Chronic insomnia, chronic pain---just not possible.

It took 3 years, but I can get nearly 6-7 straight hours now ... whoohoo!

 

I had to figure it out myself  but it was other intolerances that were causing lingering symptoms for me. (high histamine foods, soy,MSG, nitrates, blah blah blah) Again, my GI doc thinks those can resolve in time as well--that my gut is still healing and so, the enzymes that help with histamine regulation (produced in the gut) may still be impaired.

 

I never stop hoping things will improve. 

 

While hair shedding and face and scalp sores are related to the thyroid or to allergies, I do not have either of those, but I still have those symptoms from time to time. It is  mast cell dysregulation and if I remove the high histamine foods, the symptoms clear out. 

 

It is frustrating, i know and I empathize completely!! I just do not think 2 years is very long--- in terms of overall healing---and I think you should

most definitely have a chat with your GI doctor and make sure nothing else is going on. None of us are big fans of doctors, but let's face it, there are good ones out there and they can run some tests and rule out anything else that may be going on.

 

If nothing else, it may put your mind at ease and take some of the "darn it, is this as good as it gets?" thinking off the table.

 

Even though I have 3 other AI conditions, (OA, some weird connective tissue disorder the doctors can't pinpoint and the mast cell activation),  I just keep moving and that helps with lubing the joints and muscles and controlling the symptoms.

 

And I had several neuros tell my Gi doc and me that the constant burning nerve pain and paresthesia I had for 5 years might never go away. I was told I probably had fibromyalgia and to take drugs and learn to live with it. i said nope, nope, nope...and  I was told to get a "hoverround" because it would only get worse.....wrong, wrong and wrong....!

 

And every time I pedal my bike or perform yoga or lift weights, I am mentally giving them all the finger inside my head.  lol

 

I hope this helps. I really do "get this" part so well.  Many times I cried thinking "I just can't be like this for the rest of my life", but I simply refused to give in to the negative thinking and I eat cleanly, try to do things that make me happy and calm and I get some exercise and honestly, every year is better....just hang in there! 

 

Recovering from celiac--is the mother of all exercises in patience, that's for sure. 

 

Thanks, Irish.  That DOES help.   Knowing that others' recoveries have continued to move forward is very good to hear.  Very reassuring.  "Every year is a healing year"-  I like that!  

 

I think it may have been you that mentioned histamines to me in the past.  I should probably consider that too if I am cleaning up my diet. It is certainly something to be aware of.... I'll need to get into a bit of research on that. I don't know much about this area yet, but I do enjoy research!

 

I'll make an appointment with my doctor. I don't actually have a GI; the wait to see a GI about celiac disease (without strong intestinal symptoms) is about a year up here so I skipped it. I was diagnosed with tTG IgA and EMA IgA, alone, no biopsy.  I will see my doctor. Maybe she'll have ideas. The rheumy said it was not lupus or RA because I pulled no positive blood tests (yeah) - even my ANA was back to normal at the time - so it must be all celiac disease.  I should probably get into a physiotherapist to get my body moving better again, maybe my doc can give me a prescription for that.

 

Thanks again.  

 

 

Hi Nicole,

 

I don't think you should accept things as being done at 2 years.  I feel much better now than I did for the first 6 years of gluten-free.  I had to identify and eliminate various other foods as I went along.  Some didn't seem to show up right away but popped up after a few years gluten-free.  Either that or I was just really dumb for the first few years.  (Not saying that isn't the more likely scenario.)  Those other food intolerances beyond gluten can really play havoc on your well-being.

 

My most recent change I made that really helped my energy levels was to add more selenium to my my diet.  I feel better now than I have for the past 6 years, so I know things can improve.  And for me it was change in diet (beyond gluten) and thyroid supplements and selenium that made the big differences.  Although my stomach ulcer wouldn't go away no matter what I tried.  Until I prayed about it in Jesus name and it went away then.  Scared that ulcer right off.

 

So don't give up looking for improvements.  If your body is reacting to some food (other than gluten) and you are consuming it regularly it can be real bad for your health.  But you can change that by eating differently.

 

Thanks, Paul.    That all makes a whole lot of sense. If I give my body the wrong foods it won't perform well... makes complete sense.  I'll get on it.

 

My doctor has me taking selenium over the past year now, although I have been out for weeks and keeps forgetting to pick up more. That's a good reminder to make sure I am paying attention to the areas that I know need help.

 

And I'm glad you scared away your ulcer!  LOL My hubby had one years ago - those are just NASTY!

[nvsmom]

Hey, just a quick drive- by here.

On the mouth sores - try a toothpaste that is "√ No Sodium Lauryl/Laureth Sulfates". Helped my son with mouth sores. He uses Jason's or Biotene ( Colleen suggested that one and it seems to be easier to find). Might try a shampoo without that, too. Supposed to help hair loss?

 

Hmm, I never thought of that. I'll have to check my toothpaste brand later (don't want to wake up my hubby now) and see what's in it. I use a fairly basic toothpaste (I think it's Tom's) but I'll check that.

 

Someone told me about Biosil (supplements) about my 3rd month gluten-free because I had a major flare-up of some sort and was getting embarrassingly thin hair. I'm not sure if it helped, but it did't hurt.  

 

I'll look into it.  Thanks.  

 

 

Thanks IH for the heads up on this one!

 

Nicole -- Never, ever, ever -- did I say EVER -- give up on looking for answers.

 

I too still live with a lot of pain and still can't eat anything but fresh meat and veggies without some consequences, but I have improved and more importantly adjusted to make the most with my f$#%ed up body. 

 

For you it is even tougher because your children are still young and require the hands on mom every day without a break -- while I love my children beyond description during my worst days it was everything I could do to not scream at them for the most minor crap.

 

BTW...my pesky thyroid was not the reason for my issues at 2-3 years gluten-free, but did have some funky test results...it is now playing happily without thyroid meds...which is fantastic, but was completely frustrating when we thought it was the cause of my continued symptoms -- rather than simply a symptom of what was still malfunctioning in my digestive system.

 

HUGE HUGS>>>>you can get better -- just may take more of that stinkin' time -- sure wish doctors could write scrips for more of that stuff!!!

 

I won't ever!  LOL  Thanks, Lisa.  Your continue support and advice is always appreciated. Truly!

 

My kids' young age is almost a blessing as they keep me moving a bit more than I would otherwise. I coach them in soccer and basketball (where I get to play my sports too) so I get to get moving for fun... I just pay for it for days or weeks afterwards.  LOL  The downfall is that the house suffers on the days after sports, but I would rather use up my body in play than in house cleaning... So if you drop in, and I shuffle you into the backyard to visit on the patio rather than invite you in, you know it is because my hands or hips couldn't take the scrubbing of moving the all of the laundry.  LOL  

 

So, more time. Sigh.  LOL I joke.  More time isn't bad if I can hope it will improve. It took 40 years to did into this hole so I guess it will take time to dig out.  

 

Thanks.  

 

 

It's been almost 7 years for me.  I am still learning and improving.  Keep working on it.  I found digestive enzymes revealing.  That way I could tell better what was bothering me for malabsorption reasons and what might actually contain gluten.  Monitor your diet for nutrients and adjust as necessary.  Keep that food/symptom journal and keep trying things.  I realize that I've been far too impatient in the past and haven't waited long enough to see changes before making the next change.  I'm working on that.

 

Watch out for correlation does not necessarily mean causation.  That's a tough one.  Be patient.  Don't give up hope.  I hope you make some further improvements.

 

Seven years?! Wow.  I'll keep working at it. I guess I can't expect things to change if I don't.

 

I was on digestive enzymes for a while but I found they did nothing for me - it was during the time I was on steroids so that make have masked the effect of it.  Hmm.

 

Thank you for the advice. I'll get more proactive about watching my foods while trying not to jump at shadows,  

 

 

I am just about 2 years into this two.  I still continue a feeling of great transition!  I heard once that you need 1 year for recovery for every 10 years sick.  I am not sure that is true or not, but it helped me make sense of my transitional feeling this far into it.  I need to give it another year at the least.  I still have longings like to get feeling back in my limbs, but am so glad to have left brain fog and fatigue behind.  I agree not to give up looking for answers.

 

Dee

 

That gives my 2 more years of recovery time.    I can do that.  Thanks a bunch.  

[nvsmom]

Nicole, what more can I add? Everyone has said it so well!

Do not give up! If I have learned anything from all this is patience (and I do not have much of it). Just when I think something has resolved, something else pops up.

Things have improved since my diagnosis at the end of March 2013. My anemia has resolved, my fractures healed, bones building (no pain in ribs and hips while lying down and I am taking that as a sign) and a calm thyroid. And I am back on my beloved bike.

Just want to add to the thyroid topic. I am taking 90 mg. of Armour daily and an extra 30 mg. on the weekends. It is working by keeping my levels at the proper place. Increase my daily dose and I run hyper. Alternating dosages or cutting pills might be an option for you.

My recent diabetes has been a blow too. I am on a LCHF diet and that is working great except all my food allergies and intolerances are not improving. So, that makes for a pretty restrictive diet. Do not discount new intolerances. I was one who had issues with Xantham Gum. I avoid it as much as possible now. Who knew that it would bother me and it gave me that "rock in my stomach" feeling --the same first symptom I get when i am exposed to gluten. It has never bother my husband ever!

Now, I have an abdominal anerysm (thanks, Dad) and I do not even have any other risks factors for that one. It is small, but now must be monitored. Just one more thing to deal with, but I put that one in the category of earthquakes -- just be prepared!

I wish there was something I could say that would be witty or inspirational. The ladies before me have said it well. I am thankful for this forum because each time I help someone, I help myself. It is a two-way street.

Hugs!

 

You've been through the wringer!  I really shouldn't complain to you all at all - I know that things could be so much worse for me.

 

My pre-diabetes seems to have backed off somewhat after I went off the steroids, but my diet is not as low carb as it should be when flirting with diabetes. To be honest, I didn't take ownership of it like I have with my past dietary changes and health needs. I'm not sure why that is - I just sort of petered out, Not an excuse, I know.

 

If you can do it, I can do it too... There, you've inspired me.  

 

And yes, they are great around here aren't they?  

 

 

Nicole...I'm one of the newer members of this board but had to respond. I started crying reading your post. Last week I asked my husband if I should just start accepting that I may never feel good. It's not want I want but I'm discouraged. I have children...youngest will be 3 next month...and I feel like I can't be the mom they need.

But reading your story and all of the great encouraging responses has helped me

So...Thank you for sharing it.

I'm sending you (((hugs))) and hoping that you find answers. You are such a positive light on this board.

 

Aw thanks.  

 

It can be a bit tough with the kids. Mine are a bit older than yours (oldest is 11 and my baby is about to turn 7 - sniffle), but I still get run a bit ragged when I'm not feeling well. When I'm on the ball I feel like a good mom with coaching and teaching and playing, but then there are the rough days where I realize that I haven't gotten down on the floor and played with them for so long... All we can do is our best.

 

Hang in there. It does get better. At three month gluten-free my C had not yet improved (bloat and stomach pains were reduced), my migraines were back after getting down to about 1 week per month, but my mouth was raw, my head had bald patches, and my fingers could barely hold a pencil.  As time goes by, overall, I am much improved, I am just in a bad spot right now where I've slid backwards a bit.  This disease really is two steps forward, and one step back.  Hang in there.  

 

 

Well said, icelandgirl.  I hope things do get better for you Nicole and what encouraging responses for those of us whose health issues persist,  I think there are quite a few of us out here.  Thank you all for sharing.

 

Thanks.  And yes, the people around here are a treasure.

[nvsmom]

Keep the faith, Ladies. Keep learning all you can because that helps you to understand the process of healing. I wish it could be shortened but healing occurs whether you feel good or not. It just takes awhile for it all to come together and then you feel better.

 

So true.

 

 

I was bound and determined not to read this thread but curiosity killed me.  In some ways I wish I wouldn't have, I can't un see it. 

 

Gemini - thank you for your last comment, for some reason that alone made me feel a little better. 

 

I know it's going to be a long road, I really wish there was some way to speed the process. I think I am going to be eating chicken and mashed potatoes for a while.

 

I'm sorry. I didn't think how this thread could scare some of the newer people.  

 

Healing from celiac disease can be a real hassle, but for most it goes a bit more smoothly than what I've complained about here.  From what I see, most people seem to feel quite well after 6 months gluten-free.  I hope you heal quickly.

 

 

Ok I am not a veteran, because I was diagnosed with Celiacs only two years ago. But I do want to share my story.

 

Summarized version is that I was having severe pain even with following the gluten free diet the first year, pain with everything I ate and even when I wouldn't eat. Went to Cleveland Clinic and dumped thousands of dollars into doctors who gave me drugs that didn't work. And painkillers were a joke for me. I was incredibly frustrated because I thought the CC was one of the best clinics in the US. At my wits end, knowing that drugs weren't going to cut it, I started going the natural route.

 

A friend recommended me to check out www.karenhurd.com who does phone consultations. She is a nutritionist in Wisconsin. Her methods and diet are very extreme but SO effective(likely because they are extreme). Honestly I went into it so dubious, thinking that this was going to be another highly acclaimed "fix" that wouldn't work. But I was desperate so I tried it, and six months later I started seeing results (it does take awhile, but it's so worth it). She's had incredible success stories from clients with arthritis and body pain like you have as well. Now a year later I am completely pain free in my gut with following her diet - NOTHING else worked for me, I also tried GAPS and SCD diets.

 

You owe it to your health to check her out - in fact if after looking around on her website and you are interested in considering it you can pm me your address I will send you her book of testimonials for free so you can read more about it and see if it feels right for you. It's called And They Said It Wasn't Possible. Initial consultation is like $95 and then after that it's only $44 so it really isn't that terribly expensive. One of the things she does for body aches/pain is frequent intake of soluble fiber (beans, psyllium husk, etc) to reduce inflammation, but you need to accompany that with her other suggestions.

 

Here's wishing you all the best!

 

 

Thanks for the information.  That's wonderful that it worked so well for you!  Good to know.  I hope you continue to feel well.  

 

Thanks for the well wishes.

[IrishHeart]

I think it may have been you that mentioned histamines to me in the past.  I should probably consider that too if I am cleaning up my diet. It is certainly something to be aware of.... I'll need to get into a bit of research on that. I don't know much about this area yet, but I do enjoy research!

 

 

if it wasn't me, it was SkiLisa. since we both deal with this HIT...and we can always shoot you the info anytime you want it. 

 

And I took what my doc said as truth, but I adapted it to "every day is a healing day"because a year seemed too long and I could only take one day at a time. 

 

Hang in there, hon!

[nvsmom]

if it wasn't me, it was SkiLisa. since we both deal with this HIT...and we can always shoot you the info anytime you want it. 

 

And I took what my doc said as truth, but I adapted it to "every day is a healing day"because a year seemed too long and I could only take one day at a time. 

 

Hang in there, hon!

 

Thanks.    If you have a good HIT site, I'd be interested in looking at it.  I'll go through the discussion you guys have started in Related Disorders and Research over the next few days.

[GottaSki]

Thanks. If you have a good HIT site, I'd be interested in looking at it. I'll go through the discussion you guys have started in Related Disorders and Research over the next few days.

There is a lot of info on the net and it is expanding daily as many countries are now diagnosing Histamine Intolerance and Mast Cell dysfunction.

For my money...this is the best food list which is the most important factor. This list rates not only histamine content but also high amine levels.

Open Original Shared Link

When you have time...do give the mast cell thread a read or let me know if you'd like some of the better informational links.

Hang in there

Edited...link broken...I will add the food list when back on PC...or you can find in the mast cell thread.

[jebby]

Hi nvsmom,

I haven't been on here much, but I was in a similar situation to you about 2 years ago with lingering symptoms and they ended up being due to mast cell activation syndrome. I actually wrote a similar post looking for help. Like you I have both celiac and thyroid disease.

I haven't had a chance to look through all the replies on my thread, but it looks like Irish Heart and Gotta Ski have shared some info about MCAS and histamine too...

Since starting on treatment for MCAS almost all of my lingering symptoms, that I had initially attributed to celiac disease, have disappeared.

Jess

[IrishHeart]

Hi nvsmom,

I haven't been on here much, but I was in a similar situation to you about 2 years ago with lingering symptoms and they ended up being due to mast cell activation syndrome. I actually wrote a similar post looking for help. Like you I have both celiac and thyroid disease.

I haven't had a chance to look through all the replies on my thread, but it looks like Irish Heart and Gotta Ski have shared some info about MCAS and histamine too...

Since starting on treatment for MCAS almost all of my lingering symptoms, that I had initially attributed to celiac disease, have disappeared.

Jess

 

 

Hi Jess! So good to see you driving by c.com. lol

 

For those of you who have not read any of Jess's blog articles, I suggest you do. She's got some great information there!

 

 .