Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

How Long Did It Take You To Really Feel Great?


icelandgirl

Recommended Posts

icelandgirl Proficient

I know that we all recover at different rates...but I am wondering how long it has taken people on here to get to the point of feeling great.

If you haven't gotten to that point, how long since you were diagnosed and how far have you come?

For me...I still have that hope of getting to feeling great. It's been 13 months since I was diagnosed. I walked out of my Dr's office with the words, "just stop eating gluten and you will feel better." I really thought it would be a quick thing. Lol! Since then I've also given up soy and dairy and eat almost only whole foods. I've certainly seen improvements...I don't have D all day every day. But I'm not great. I do have other issues...Hashimotos and a thyroid that is functioning worse than ever. I've started a new medication and I'm hoping it helps. One day I really want to be able to say and mean it..."I feel great!"


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



bartfull Rising Star

Almost four years. By three and a half I had ditched my further intolerances but stiil had no energy. Just in the past few weeks I've been taking more vitamin D (went from 4000 IU's to 5000) and I also went from 3000mcg of B12 to 5000. That seems to be doing the trick. I've got so much more energy now that I cleaned my shop from top to bottom last week!

w8in4dave Community Regular

I still don't feel better. I thought I did for a while but then other intolerances came up, then Vitamin deficiencies, I am tired of having no energy.....

icelandgirl Proficient

Almost four years. By three and a half I had ditched my further intolerances but stiil had no energy. Just in the past few weeks I've been taking more vitamin D (went from 4000 IU's to 5000) and I also went from 3000mcg of B12 to 5000. That seems to be doing the trick. I've got so much more energy now that I cleaned my shop from top to bottom last week!

That's so great Bart! It gives me such hope too. Thanks for sharing. I've seen you sharing your excitement on other threads regarding getting more food back...so wonderful!

Question for you...for Vitamin D...what do you take? Liquid or pill for? I've been taking 2000iu since July of a pill for of D3. Last check my level had only gone up 3 points. I'm now at 33 instead of 30.

icelandgirl Proficient

I still don't feel better. I thought I did for a while but then other intolerances came up, then Vitamin deficiencies, I am tired of having no energy.....

w8in4dave...I'm sorry to hear that you don't feel better. That's so hard and discouraging (hugs). Has giving up your other intolerances helped? Hopefully supplementing your vitamin deficiencies will get things moving in the right direction.
bartfull Rising Star

The ones I take are a little football shaped gel with liquird inside.

icelandgirl Proficient

The ones I take are a little football shaped gel with liquird inside.

I have some of those and some tablets. Maybe I just need to take more. Thanks!

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



GF Lover Rising Star

I think the feeling great part can depend on how long you have been UN-diagnosed and how much damage has been done.  Some times your body just can't fix whats wrong.  I believe every small improvement should be celebrated  because when things start going to s$#&, it really goes to s$#& fast and quality of life issues come to the fore front.  I don't want to depress you so I'll leave it at that :)

 

Colleen

nvsmom Community Regular

I think I stopped improving at about one and a half years.  My (arm) arthritis seemed to be at it's best around then, and my migraines and other problems had improved greatly.

 

I still have some issues like periodic, annoying hair loss and fatigue, but I'm not convinced it is celiac linked.  I've developed some sort of arthritis in my hips in the last year or so, and since I was gluten-free a year before that started, there's my proof to myself that not everything is from celiac disease.  I too have other autoimmune problems, so I doubt I'll ever get things as good as I'd like them to be.  And to be honest, I should eat better and exercise more - my lifestyle isn't helping me any!  LOL

MycasMommy Enthusiast

I think I have been somewhat sick my whole 38 years.  After I had major abdominal surgery a couple of years ago is when all the serious trouble began. It took forever to figure out what might be so very wrong and I kept being told it was just from the surgery. 2 years later I should not be so sick. I went through SCD, and gluten free and all kinds of different things because I had no idea what was wrong.  The doctors cannot test me for it either because I cant keep it down. I have been gluten free 100% for the past 14 months. I think I will feel even better the longer I have to heal. I wake up without hurting, the fatigue I have had all my life that has made me crazy is just ..gone.. no more edema, no more getting sick so easily from others, no more gas and bloating, no more vomiting...  I just feel better and better every day.  You know though... I cried when I found this forum.  More than once.  Other people that really understand how sick you can get and why. I am crying now a bit.. just with sheer relief.  I thought I would die there for a while. Actually and truly die. <3

icelandgirl Proficient

I think the feeling great part can depend on how long you have been UN-diagnosed and how much damage has been done.  Some times your body just can't fix whats wrong.  I believe every small improvement should be celebrated  because when things start going to s$#&, it really goes to s$#& fast and quality of life issues come to the fore front.  I don't want to depress you so I'll leave it at that :)

 

Colleen

Hi Colleen...I completely agree...it's individual. But it's really interesting to hear people's experiences too. I also understand how things going to s$#& gets going fast. If you want to share more...Please do. It's good for us all to hear how this disease affects others.
icelandgirl Proficient

I think I stopped improving at about one and a half years.  My (arm) arthritis seemed to be at it's best around then, and my migraines and other problems had improved greatly.

 

I still have some issues like periodic, annoying hair loss and fatigue, but I'm not convinced it is celiac linked.  I've developed some sort of arthritis in my hips in the last year or so, and since I was gluten-free a year before that started, there's my proof to myself that not everything is from celiac disease.  I too have other autoimmune problems, so I doubt I'll ever get things as good as I'd like them to be.  And to be honest, I should eat better and exercise more - my lifestyle isn't helping me any!  LOL

Hi Nicole...I'm not ever sure if my issues are related to many years undiagnosed celiac or many years of undertreated thyroid stuff or maybe something else altogether. It is for sure frustrating.
icelandgirl Proficient

I think I have been somewhat sick my whole 38 years.  After I had major abdominal surgery a couple of years ago is when all the serious trouble began. It took forever to figure out what might be so very wrong and I kept being told it was just from the surgery. 2 years later I should not be so sick. I went through SCD, and gluten free and all kinds of different things because I had no idea what was wrong.  The doctors cannot test me for it either because I cant keep it down. I have been gluten free 100% for the past 14 months. I think I will feel even better the longer I have to heal. I wake up without hurting, the fatigue I have had all my life that has made me crazy is just ..gone.. no more edema, no more getting sick so easily from others, no more gas and bloating, no more vomiting...  I just feel better and better every day.  You know though... I cried when I found this forum.  More than once.  Other people that really understand how sick you can get and why. I am crying now a bit.. just with sheer relief.  I thought I would die there for a while. Actually and truly die. <3

Aww mycasmom... (((hugs))). Finding this board has been great for me too...I totally get it. It helps talking with others who really get what you are dealing with. It's really good to hear how well you are doing!
larry mac Enthusiast

I was extremely fortunate. Made an immediate and complete recovery the first day I started the gluten-free diet. It was like a miracle!

 

best regards, larry mac

icelandgirl Proficient

I was extremely fortunate. Made an immediate and complete recovery the first day I started the gluten-free diet. It was like a miracle!

 

best regards, larry mac

Wow...that is amazing!
larry mac Enthusiast

Yes, and forgot to mention, I was sick for two years before I found a doctor that knew about Celiac Disease. Lost a lot of weight from gastro problems. Of course it's more known now days.  

 

best regards, larry mac

w8in4dave Community Regular

w8in4dave...I'm sorry to hear that you don't feel better. That's so hard and discouraging (hugs). Has giving up your other intolerances helped? Hopefully supplementing your vitamin deficiencies will get things moving in the right direction.

Awee! Thanks, Well somedays I feel great! Somedays just feel horrid! Like someone sucked the energy right outta me! I have just started taking my Folic Acid for 2 weeks I don't know how long it takes to absorbe or if it is or not. When I am done with this bottle I am going to go get my blood levels checked again.
HavaneseMom Explorer

Hi icelandgirl,

I'm sorry to hear your still not feeling well. I remember we came on this forum around the same time. I am still in the recovery process too. I feel much better than when I started, but I still have some stretches of time where I have a set back despite a strict gluten free diet.

One of the first books I read about Celiac Disease said to expect 6 months to 2 years before feeling better, depending on your systems when you are diagnosed. I was feeling pretty rotten by the time I was diagnosed, so I just always assumed I would be one of the people that take a couple of years to feel "normal" :) . I can't believe how many people leave their doctors office being told they should feel better quickly on a gluten free diet. That type of misinformation can lead to such disappointment. I also read that is can take up to 5 years for nutritional deficiencies to correct themselves, so that could definitely make a person feel not quite right.

I was reading your thread on Hashi's and I think I read your Ferritn tested at 15, which is way too low. If I read that correctly, that could explain some of your symptoms as well. My GI doc told me to expect low ferritin symptom like fatigue and hair loss until my Ferritn level reaches at least 50, but optimally in the 60-70 range. At my last appointment my Ferritin was at 12 and he said to expect it to take at least another year to get to 50, so it's not a quick fix unfortunately. With your number being at 15, it will probably take a while to come up.

I really hope you start to feel better and see improvement soon.

icelandgirl Proficient

Hi havanesemom and thanks for your nice response!

Don't get me wrong...I feel much better than I did...but it has in no way been that quick fix my Dr suggested it would be. I'm hoping to continue improving with time. The Hashimotos has set me back for sure. My thyroid functioning has gotten worse in the past few months and the thyroid affects everything! I started a new medication a couple of weeks ago and I have hope that it will help.

Interesting you say that about the ferritin. My Dr said it looked fine. Because it's in the box I'm guessing. I'm supplementing anyway and will recheck blood at the end of the month. If you don't mind my asking...what kind of iron and how much did your Dr suggest taking? I'm still working on my D too. It went from 30-33 between July and November. I'll be having that checked at the end of the month too along with thyroid. I will be reporting back with all results. Lol!

BlessedMommy Rising Star

I'm at 5 years gluten free now and I feel really good. 

icelandgirl Proficient

Awee! Thanks, Well somedays I feel great! Somedays just feel horrid! Like someone sucked the energy right outta me! I have just started taking my Folic Acid for 2 weeks I don't know how long it takes to absorbe or if it is or not. When I am done with this bottle I am going to go get my blood levels checked again.

I really hope that does it for you! I'm trying to get my ferritin and vitamin D up...hoping that helps too!
icelandgirl Proficient

I'm at 5 years gluten free now and I feel really good.

That's wonderful Ruth! Did it take until now to get to that point?
BlessedMommy Rising Star

I would say that I got there last year. Due to help from this forum, I eliminated some of the sneaky trace gluten from my kitchen and other areas, and I'm sure that helped.

icelandgirl Proficient

I would say that I got there last year. Due to help from this forum, I eliminated some of the sneaky trace gluten from my kitchen and other areas, and I'm sure that helped.

That's great!
HavaneseMom Explorer

Hi havanesemom and thanks for your nice response!

Don't get me wrong...I feel much better than I did...but it has in no way been that quick fix my Dr suggested it would be. I'm hoping to continue improving with time. The Hashimotos has set me back for sure. My thyroid functioning has gotten worse in the past few months and the thyroid affects everything! I started a new medication a couple of weeks ago and I have hope that it will help.

Interesting you say that about the ferritin. My Dr said it looked fine. Because it's in the box I'm guessing. I'm supplementing anyway and will recheck blood at the end of the month. If you don't mind my asking...what kind of iron and how much did your Dr suggest taking? I'm still working on my D too. It went from 30-33 between July and November. I'll be having that checked at the end of the month too along with thyroid. I will be reporting back with all results. Lol!

I'm glad to hear you have seen improvement!

The setbacks can be tough, physically and mentally. I hope the new medication will make a big difference for you. It is very rewarding to be able to knock down another symptom, although it seems to take a while to get to that point sometimes. I finally had a ah-ha moment and realized I am egg intolerant, and eliminating eggs has made a huge difference for me. I wish I would have figured that out a year ago.

 

My GI doctor initially wanted me to take either 325mg of iron salt or 65mg of elemental iron 3 times a day because I had moderate iron defienciency anemia. That was way too much for my digestive system to handle. After trying many different types of iron I found that I could only tolerate Iron Bis-Glycinate at 25 mg of elemental iron 3 times a day. I would have to stop taking it completely for a while whenever I had stomach aches. One thing to keep in mind with iron is that if you are supplementing you should probably talk to your doctor about it, so they can help you find the right dose and check your iron levels every few months. If you take too much, you can end up with iron overload which can cause a whole other set of problems. At this point because iron supplements do upset my stomach, I usually only taking 25mg of Iron Bis-Glycinate once a day.

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,836
    • Most Online (within 30 mins)
      7,748

    RyanOB
    Newest Member
    RyanOB
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.4k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • knitty kitty
      @Manaan2,  I'm so happy to hear you're going to try thiamine and magnesium!  Do let us know the results!   You may want to add a B 50 Complex with two meals of the day to help boost absorption.  Thiamine interacts with each of the other B vitamins which are all water soluble.   When supplementing magnesium, make sure to get sufficient calcium.  Calcium and magnesium need to be kept in balance.  If you choose a calcium supplement, take two hours apart from magnesium as they compete for absorption.  Take Calcium with Vitamin D.  Vitamin D helps calm the immune system.   For pain, I use a combination of thiamine, B12 Cobalamine, and Pyridoxine B6.  These three vitamins together have analgesic effects.  My preferred brand is "GSG 12X Takeda ALINAMIN EX Plus Vitamin B1 B6 B12 Health Supplementary from Japan 120 Tablets".  Alinamin is another form of thiamine.  It really is excellent at relieving my back pain from crushed vertebrae without side effects and no grogginess.   Look into the low histamine version of the Autoimmune Protocol Duet (Dr. Sarah Ballentyne, a Celiac herself, developed it.)  It really helps heal the intestines, too.  It's like a vacation for the digestive system.  Add foods back gradually over several weeks after feeling better.   I'm so happy to have pointed the way on your journey!  Let us know how the journey progresses! P. S. Add a Potassium supplement, too.  Potassium is another electrolyte, like magnessium, that we need.
    • Manaan2
      @knitty kitty I can't thank you enough!  My husband and I already started looking into those supplements.  We definitely plan to give it a try.  We've been against the Miralax since it was originally advised by PCP, but because of the level of pain she experienced on a daily basis, we decided to try it.  We've made many attempts to gradually decrease but due to her pain and related symptoms, we've kept her on it while trying all sorts of other dietary adjustments pre and post diagnosis specific to food; so far none of those efforts have made a significant difference.  I will definitely share how she's doing along the way!
    • BIg Nodge
      Hi, I have recently embarked on the gluten-free journey. I have what to me seems like a somewhat confusing set of test results and symptoms. I have been impressed by the accumulated knowledge and thoughtfulness as I browse this forum, so I figured I'd make a post to see if anyone can offer any insight. I know there are many posts like this from new users, so I have tried to do my baseline research first and not ask super obvious questions.  I'm 43, overall very healthy. No history of gluten sensitivity or really any of the classic GI symptoms. About three years ago I started to experience intermittent bouts of fatigue, chills/cold intolerance, and shortness of breath/air hunger (sometimes feels like a hollowness in my chest, hard to describe). The symptoms over time have become fairly significant, though not debilitating, I am able to exercise regularly and am fairly physically active, continue to perform well at work. But for example I have gone from someone who consistently ran hot, was always cranking the a/c, to someone who wears a down vest inside at work in winter and get chills if the a/c even blows on me in summer. I get tired and lose energy even when getting decent amounts of sleep, and have to have my wife take over on long drives that I could previously handle with no problems. More generally when I am experiencing these symptoms they seem to crowd out space in my mind for focusing on my family, my hobbies/activities etc, I sort of withdraw into myself.   I happened to be experiencing these symptoms during an annual physical with my PCP a few years ago, he observed post nasal drip and suggested it was allergies and that I treat it with claritin. At first it seemed to respond to claritin (though not zyrtex), but over time I became unsatisfied with that answer. There didn't seem to be any seasonal rhyme or reason to my symptoms, and I felt like I was on an endless loop of taking claritin, then stopping, not being sure if it was even making a difference. I did eventually get allergy tests and found modest allergies to dust and pollen, which didn't feel like a smoking gun.  I then started seeing a natural medicine doctor who was much more willing to explore my symptoms via testing. The first thing that came back abnormal was elevated thyroid peroxidase antibodies/TPOs, 137 IU/mL vs a reference range of <9. At the same time my thyroid panel showed normal thyroid hormone levels. So it appears my immune system is attacking my thyroid even though it is working fine. I got a thyroid ultrasound at the time, it was clear, but with some abnormalities such that they suggested I get is scanned again in a year. These are certainly risk factors for a thyroid autoimmune disease, though my thyroid seems to be working fine for now.  From here my doctor considered celiac due to the murky thyroid/celiac links, so we did a panel. Results were as follows: TT IGA <1 U/ml, TT IGG <1 U/ml, deamidated gliadin IGA 24.6 U/ml, deamidated gliadin IGG <1 U/ml, IGAs 170 mg/dL. Readings greater than 15 considered high by my lab for the first four, my IGAs are within reference range. So basically just the deamidated IGA popped, but my IGAs are normal. I also notice on the tests that my thyroglobulin was high, 86.7 ng/ml vs a range of 2.8 - 40.9.  My doctor suggested that it certainly wasn't conclusive for celiac, but it was possible, and likely that I have some sort of gluten sensitivity. She suggested going gluten free and seeing how I felt as opposed to doing a biopsy. The best theory I can come up with is perhaps I am a silent celiac or just have a gluten sensitivity that doesn't produce immediate GI symptoms, but is still doing damage and over time has caused leaky gut. So now gluten is getting into my blood, and my immune system is attacking it but also mistakingly attacking my thyroid.  So that's what I did, went gluten free in October. It's been about four months, and I am really not feeling any difference. I still get the same symptoms that come and go. My bowel movements may be a bit more regular, but it was never a major issue before so I would consider that a minor improvement. I know that it can take a while to see improvements, and I am going to remain gluten-free and see how I feel. But I am definitely questioning whether I really understand what is going on, and am open to any thoughts or suggestions from the forum. Sometimes I wish I just went ahead with the biopsy before going gluten-free. While I would certainly be down to start drinking IPAs again ahead of a biopsy, you know, for science, I feel like at this point I would be throwing away four months of work and am better off staying the course and seeing what happens. But I'm really not sure.  I know there is a lot of thyroid knowledge on these boards, along with the celiac expertise, so I'm curious if this resonates with anyone's experience. And I'm interested in what sort of timelines people have experienced in terms of feeling improvements for some of these non-GI symptoms like chills, SOB, brain fog etc. Thanks in advance. 
    • cameo674
      Does it taste like black licorice?  It said it was chewable.  I do not like that flavor.     Since the burn at the back of my throat is there everyday, I usually only take something when it is unbearable and keeping me from ADL especially sleep.  
    • Scott Adams
      Your concerns about Nando's cross-contamination practices are valid and important for the celiac community. It's disappointing that Nando's does not have stricter protocols for children's portions, especially given the risk of cross-contact with gluten-containing items like garlic bread. Cooking gluten-free items on shared surfaces, even if cleaned, is not safe for individuals with celiac disease, as even trace amounts of gluten can cause harm. While the adult butterfly chicken may be a safer option, the inconsistency in practices for children's meals is concerning. It's frustrating that Nando's headquarters did not take responsibility, but sharing your experience raises awareness and may encourage them to improve their protocols. Consider reaching out to celiac advocacy organizations to amplify your concerns and push for better standards. Always double-check with staff and emphasize the importance of avoiding cross-contamination when dining out.
×
×
  • Create New...