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How Long Did It Take You To Really Feel Great?

icelandgirl

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icelandgirl Proficient
icelandgirl
Posted

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!"

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bartfull Rising Star
bartfull
Posted

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
w8in4dave
Posted

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
icelandgirl
Posted
  • Author

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
icelandgirl
Posted
  • Author

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
bartfull
Posted

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

icelandgirl Proficient
icelandgirl
Posted
  • Author

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!
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GF Lover Rising Star
GF Lover
Posted

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
nvsmom
Posted

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
MycasMommy
Posted

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
icelandgirl
Posted
  • Author

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
icelandgirl
Posted
  • Author

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
icelandgirl
Posted
  • Author

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
larry mac
Posted

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
icelandgirl
Posted
  • Author

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
larry mac
Posted

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
Posted

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
HavaneseMom
Posted

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
icelandgirl
Posted
  • Author

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
BlessedMommy
Posted

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

icelandgirl Proficient
icelandgirl
Posted
  • Author

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
icelandgirl
Posted
  • Author

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
BlessedMommy
Posted

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
icelandgirl
Posted
  • Author

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
HavaneseMom
Posted

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.

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    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
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