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
      131,667
    • Most Online (within 30 mins)
      7,748

    AubreyMBSMartin
    Newest Member
    AubreyMBSMartin
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Inkie
      Thank you for the information ill will definitely bring it into practice .
    • Scott Adams
      While plain, pure tea leaves (black, green, or white) are naturally gluten-free, the issue often lies not with the tea itself but with other ingredients or processing. Many flavored teas use barley malt or other gluten-containing grains as a flavoring agent, which would be clearly listed on the ingredient label. Cross-contamination is another possibility, either in the facility where the tea is processed or, surprisingly, from the tea bag material itself—some tea bags are sealed with a wheat-based glue. Furthermore, it's important to consider that your reaction could be to other substances in tea, such as high levels of tannins, which can be hard on the stomach, or to natural histamines or other compounds that can cause a non-celiac immune response. The best way to investigate is to carefully read labels for hidden ingredients, try switching to a certified gluten-free tea brand that uses whole leaf or pyramid-style bags, and see if the reaction persists.
    • Scott Adams
      This is a challenging and confusing situation. The combination of a positive EMA—which is a highly specific marker rarely yielding false positives—alongside strongly elevated TTG on two separate occasions, years apart, is profoundly suggestive of celiac disease, even in the absence of biopsy damage. This pattern strongly aligns with what is known as "potential celiac disease," where the immune system is clearly activated, but intestinal damage has not yet become visible under the microscope. Your concern about the long-term risk of continued gluten consumption is valid, especially given your family's experience with the consequences of delayed diagnosis. Since your daughter is now at an age where her buy-in is essential for a gluten-free lifestyle, obtaining a definitive answer is crucial for her long-term adherence and health. Given that she is asymptomatic yet serologically positive, a third biopsy now, after a proper 12-week challenge, offers the best chance to capture any microscopic damage that may have developed, providing the concrete evidence needed to justify the dietary change. This isn't about wanting her to have celiac; it's about wanting to prevent the insidious damage that can occur while waiting for symptoms to appear, and ultimately giving her the unambiguous "why" she needs to accept and commit to the necessary treatment. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
    • Scott Adams
      Welcome to the community! Generally, for a gluten challenge before celiac disease blood tests, Tylenol (acetaminophen) is considered safe and should not interfere with your antibody results. The medications you typically need to avoid are those like ibuprofen (Advil, Motrin) or naproxen (Aleve) that can cause intestinal irritation, which could potentially complicate the interpretation of an endoscopy if you were to have one. However, it is absolutely crucial that you confirm this with either your gastroenterologist or your surgeon before your procedure. They know the specifics of your case and can give you the definitive green light, ensuring your surgery is comfortable and your celiac testing remains accurate. Best of luck with your surgery tomorrow
    • Xravith
      Thank you for the advice. I’ve actually never checked for nutritional deficiencies, but for as long as I can remember, I’ve always taken vitamin and mineral supplements — otherwise my symptoms get worse. This week I stopped eating gluten to confirm whether my symptoms are really caused by it. Starting next week, I’ll reintroduce gluten — it’s sad to go back to how I was before — but at least I’ll be able to take the necessary tests properly. I think the diagnostic process will be long, but at least I’m happy that I finally decided to address this doubt I’ve had for years.
×
×
  • 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.