Jump to content
  • 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'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.

Oh my goodness the setbacks can be hard! For me, the emotional part is the worst. But I'm an emotional person so it is to be expected.

How did you figure out your egg intolerance?

I'm taking ferrous gluconate on the suggestion of another celiac friend. It's supposed to be easy on the GI system and so far have had no issues. I did put in a request to have my iron stuff all checked when I get my thyroid done. I definitely don't want to overdo it, but I knew that a ferritin of 15 with a range of 15-150 wasn't great no matter what my Dr said so I took matters into my own hands. I'm tired of being exhausted!


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



Celiac.com Sponsor (A8-M):



HavaneseMom Explorer

Oh my goodness the setbacks can be hard! For me, the emotional part is the worst. But I'm an emotional person so it is to be expected.

How did you figure out your egg intolerance?

I'm taking ferrous gluconate on the suggestion of another celiac friend. It's supposed to be easy on the GI system and so far have had no issues. I did put in a request to have my iron stuff all checked when I get my thyroid done. I definitely don't want to overdo it, but I knew that a ferritin of 15 with a range of 15-150 wasn't great no matter what my Dr said so I took matters into my own hands. I'm tired of being exhausted!

Hopefully you will be able to get your Ferritin up quickly supplementing. 15 is really low. That normal range of 15-150 is too wide and is just terrible.

 

It took me a while to figure out my egg intolerance because the symptoms would last about 5 days. I was eating them every few days for a meal so I was having a continuous overlap of symptoms. I ran out of eggs and didn't have any for a week, then forgot to pick them up at the store, so I had gone without for a couple of weeks and was feeling pretty good. When I started eating them again I had terrible indigestion, heartburn, bloating and a constant lump in my throat. I did an elimination and introduction a couple times and the same thing happened again. It was kind of crazy that I didn't realize it before, but my digestive system is so much more happy without eggs. 

icelandgirl Proficient

Hopefully you will be able to get your Ferritin up quickly supplementing. 15 is really low. That normal range of 15-150 is too wide and is just terrible.

 

It took me a while to figure out my egg intolerance because the symptoms would last about 5 days. I was eating them every few days for a meal so I was having a continuous overlap of symptoms. I ran out of eggs and didn't have any for a week, then forgot to pick them up at the store, so I had gone without for a couple of weeks and was feeling pretty good. When I started eating them again I had terrible indigestion, heartburn, bloating and a constant lump in my throat. I did an elimination and introduction a couple times and the same thing happened again. It was kind of crazy that I didn't realize it before, but my digestive system is so much more happy without eggs.

I know! I'm amazed when a Dr says it looks fine when 1 point down it would be too low. It's tough. I really hate going to Dr's. I have such a mistrust of them and going to an appointment is very anxiety producing for me. I have to do serious deep breathing in the waiting room preparing to go in. So when my Dr says your ferritin looks good...instead of saying doesn't the fact that it's the very bottom of the reference range indicate that supplementation may be in order? I say OK and then go out and buy iron and supplement on my own. Not ideal. But all my labs are reordered for the end of the month. We will see.

Interesting on the eggs for sure...so glad you figured it out!

  • 2 weeks later...
blueshades Newbie

I think my worst time was around 2 years ago when i was waking up everyday with extreme pain and needing the make that toilet trip. That's when i really cut all gluten. I was already doing my whole doctors thing at the time so i knew it was possibly food allergies.

The second i went off wheat i felt the pain not as intense in just days.

I am still not well. I slip up and make mistakes. The past few days i've been insanely good and noticed my tummy seems more controlled and less 'not feeling right'. 

I always feel tired. But i think it has to do with lifestyle too. Life is so busy these days with the constant working and constant rush to be 'doing something'. I really crave to be back in the past when everything wasn't so fast paced and so rushed just so i can have the time to heal and feel ok again.

I've accepted the fact i'll never feel great. But i want to feel close to great. Like i feel good enough that it seems possible :)

And i have felt that before! There must have been periods where i've been super good and doing it right because it was a few days before i thought to myself... wow i've been feeling pretty good lately :)

Then of course i eat something risky and ruin it all! Stay dedicated (we have no choice!) and have hope :)

icelandgirl Proficient

Hi blueshades...it's great to hear that you've had some times if feeling really well. Great motivator to stay completely gluten free right? I do think life tends to be too fast paced as well.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

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

    2. - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

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

    3. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

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

    4. 0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

    5. - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

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

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,333
    • Most Online (within 30 mins)
      7,748

    Donna Chem
    Newest Member
    Donna Chem
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • knitty kitty
      @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
      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.