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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,024
    • Most Online (within 30 mins)
      7,748

    Maus14
    Newest Member
    Maus14
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      Your experience is both shocking and critically important for the community to hear, underscoring the terrifying reality that cross-contamination can extend into the most unexpected and invasive medical devices. It is absolutely devastating that you had to endure six months of sickness and ultimately sustain permanent vision loss because a doctor dismissed your legitimate, life-altering condition. Your relentless research and advocacy, from discovering the gluten in MMA acrylic to finding a compassionate prosthodontist, is a testament to your strength in a system that often fails celiac patients. While the scientific and medical consensus is that gluten cannot be absorbed through the skin or eyes (as the molecules are too large to pass through these barriers), your story highlights a terrifying gray area: what about a substance *permanently implanted inside the body*, where it could potentially shed microparticles or cause a localized immune reaction? Your powerful warning about acrylic lenses and the drastic difference with the silicone alternative is invaluable information. Thank you for sharing your harrowing journey and the specific, severe neurological symptoms you endure; it is a stark reminder that celiac is a systemic disease, and your advocacy is undoubtedly saving others from similar trauma.
    • Scott Adams
      Those are driving distance from me--I will try to check them out, thanks for sharing!
    • Scott Adams
      I am so sorry you're going through this bad experience--it's difficult when your own lived reality of cause and effect is dismissed by the very professionals meant to help you. You are absolutely right—your violent physical reactions are not "what you think," but undeniable data points, and it's a form of medical gaslighting to be told otherwise, especially when you have a positive HLA-DQ2 gene and a clear clinical picture. Since your current "celiac specialist" is not addressing the core issue or your related conditions like SIBO and chronic fatigue, it may be time for a strategic pivot. Instead of trying to "reprove" your celiac disease to unwilling ears, consider seeking out a new gastroenterologist or functional medicine doctor, and frame the conversation around managing the complications of a confirmed gluten-free diet for celiac disease. Go in and say, "I have celiac disease, am strictly gluten-free, but I am still suffering from these specific complications: SIBO, chronic fatigue, dermatological issues, and high blood pressure linked to pain. I need a partner to help me address these related conditions." This shifts the focus from a debate about your diagnosis to a collaborative plan for your current suffering, which is the help you truly need and deserve to work toward bouncing back.
    • NanCel
      Hello, no I had to have them re done and then used a liner over the top.  Many dentists are not aware of the celiac effects.  Best of luck.   There is other material, yet, very expensive.
    • sleuth
      He is not just a psychiatrist.  He is also a neuroscientist.  And yes, I have already read those studies.   I agree with benfotiamine.  This is short term while glutened/inflammation occurs.  As I had already mentioned, these symptoms no longer exist when this phase passes.  And yes, I know that celiac is a disease of malnutrition.  We are working with a naturopath.
×
×
  • 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.