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.
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
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.
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.
HAVE A SUPER SHINY DAY
LTES gem 2014
*BiPolar, Major Depression, Anxiety *Hypothyroidism, *Celiac
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.
"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir
"The strongest of all warriors are these two - time and patience." Leo Tolstoy
"If you want to lift yourself up, lift up someone else" Booker T. Washington
“If idiots could fly, the sky would be like an airport.”― Laura Davenport
"Do or do not. There is no try. "- Yoda.
"LTES" Gem 2014
Misdiagnosed for 25+ years; Finally Diagnosed with Celiac 11/01/10. Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat. I. Win.
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.
Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it." Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me. Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul
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?
Thanksgiving dinners take 18 hours to prepare. They are consumed in 12 minutes. Half-times take 12 minutes. This is not a coincidence. - Emma Bombeck
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 fucked 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!!!
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.
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.
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.
Non-functioning Gall bladder Removal Surgery 2005
Diagnosed via Blood Test and Endoscopy: March 2013
Hashimoto's Thyroiditis -- Stable 2014
Anemia -- Resolved
Fractures (vertebrae): June 2013
Osteopenia/osteoporosis -- June 2013
Allergies and Food Intolerances
Diabetes -- January 2014
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.
August 2014- Hashimoto's
"You never know how strong you are, until being strong is your only choice."
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.
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.
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.