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

One Year And Still Feel Awful

holdthegluten

Recommended Posts

holdthegluten Rising Star
holdthegluten
Posted

I dont know what to do to feel better! I eat chicken,fish,beef,veggies,peanut butter,almond butter,Lara Bars, and flax seed bars, bananas,apples,strawberries. I am gluten-free,DF,Sugar Free, and SOY FREE. I eat so clean,and i feel no difference. I dont know if I should get another endoscopy or what........What can i do to figure out what is wrong. I know i am Gluten free.

I still have awful fatigue, leg weakness, nausea,little dizziness, tired red eyes, little brain fog, bloating.

What else could be causing this. I use Dove Shampoo, Crest toothpaste. I take a good Probiotic given to me by my ND.

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

Celiac.com Sponsor (A8-M):


jerseyangel Proficient
jerseyangel
Posted

Hi--

First I have to tell you that your new baby picture is just adorable :D

It sounds like you're doing everything right--you have gone over your personal care products and your kitchen--right?

One thing that pops out at me is the probiotic. I have yet to try one that agrees with me. I get nauseous, dizzy, and feel terribly sick on them.

I wonder if it would make a difference to stop them for a week or so and see if that doesn't make you feel better. I had to literally stop all suppliments while I was healing.

gfpaperdoll Rookie
gfpaperdoll
Posted

If I were you I would give up the lara bars (I cannot eat them) & the flax seed bars, & the peanut butter and almond butter. I would eat fresh walnuts, in place of peanuts & almond butter. A lot of people have problems with the almonds (me). I would try to add in fresh pecans also. You did not mention if you are eating white potatoes, if you are i would cut them out. Replace with sweet potatoes. I would also look at what kind of beans you are eating.

when you go gluten-free/DF you really need to keep researching and learning about foods. The high lectin foods, the nightshade family, the oxalates, etc.

I have changed my diet several times, to the better each time. It is a process & I hope you continue to find out what your problems are.

Peanuts are a legume & they contribute to leaky gut, not a good choice for a newly gluten-free person...

holdthegluten Rising Star
holdthegluten
Posted
  • Author
If I were you I would give up the lara bars (I cannot eat them) & the flax seed bars, & the peanut butter and almond butter. I would eat fresh walnuts, in place of peanuts & almond butter. A lot of people have problems with the almonds (me). I would try to add in fresh pecans also. You did not mention if you are eating white potatoes, if you are i would cut them out. Replace with sweet potatoes. I would also look at what kind of beans you are eating.

when you go gluten-free/DF you really need to keep researching and learning about foods. The high lectin foods, the nightshade family, the oxalates, etc.

I have changed my diet several times, to the better each time. It is a process & I hope you continue to find out what your problems are.

Peanuts are a legume & they contribute to leaky gut, not a good choice for a newly gluten-free person...

I tried fresh almonds and walnuts and they bloated me up, which is why i switched to almond butter........i am afraid i wont get enough calories if i cut out the nuts (almond butter, lara bars, flax seed bar,etc). My ND wants me to eat a lot of fish, but it is so low in calories im worried i will lose more weight if i cut out the fatty nuts.

chatycady Explorer
chatycady
Posted

Do you have a blood sugar problem? Your symptoms could be many things, but they sound similar to mine. And I have hypoglycemia. Celiac can mess up blood sugar. Just a thought.

I would skip the peanutbutter and banana's for now.

hathor Contributor
hathor
Posted

If I'd gone a year and still felt awful, I would do an elimination diet. I think very quickly you would learn if your symptoms are food-related. It might take some time to pin down which foods are the problems, but it would be worth it.

You could also get testing done for food allergies.

Do you take any medicines or supplements that you haven't checked out? That's the only other thing I can think of. That, or you are regularly eating some product that is cross-contaminated or has casein, hidden gluten, etc.

gfpaperdoll Rookie
gfpaperdoll
Posted

re calories you might want to read the book "Good Calories Bad Calories" then cook a half pound of bacon & fry a couple of eggs in the bacon fat, that ought to give you a few good calories to start the day.

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

Celiac.com Sponsor (A8-M):


holdthegluten Rising Star
holdthegluten
Posted
  • Author
Do you have a blood sugar problem? Your symptoms could be many things, but they sound similar to mine. And I have hypoglycemia. Celiac can mess up blood sugar. Just a thought.

I would skip the peanutbutter and banana's for now.

No............i dont have any blood sugar problems

holdthegluten Rising Star
holdthegluten
Posted
  • Author
If I'd gone a year and still felt awful, I would do an elimination diet. I think very quickly you would learn if your symptoms are food-related. It might take some time to pin down which foods are the problems, but it would be worth it.

You could also get testing done for food allergies.

Do you take any medicines or supplements that you haven't checked out? That's the only other thing I can think of. That, or you are regularly eating some product that is cross-contaminated or has casein, hidden gluten, etc.

I cut out the nut butters and i feel a little better today..............I think i may have a candida problem despite the fact that the blood/stool tests said i didnt. I took 2 Grapefruit seed extract pills yesterday and i saw these tiny specs in my stool that i read could be yeast. Hmmmmmmmmm. I dont know what to think anymore.

holdthegluten Rising Star
holdthegluten
Posted
  • Author
Hi--

First I have to tell you that your new baby picture is just adorable :D

It sounds like you're doing everything right--you have gone over your personal care products and your kitchen--right?

One thing that pops out at me is the probiotic. I have yet to try one that agrees with me. I get nauseous, dizzy, and feel terribly sick on them.

I wonder if it would make a difference to stop them for a week or so and see if that doesn't make you feel better. I had to literally stop all suppliments while I was healing.

Thanks for the baby compliment...........i am trying to change the picture often, since he changes weekly........everybody on here is so kind. Thanks again

JodiC Apprentice
JodiC
Posted

Your symptoms you mentioned sound like a possible sjogren's syndrome, especially the dry red eyes. I have this. I also have Vitamin D and C deficiencies. Get these tested along with the irons and thiamin levels. Sometimes just going gluten free does not do the trick especially if other auto-immune disorders are present.

WW340 Rookie
WW340
Posted

I can't do many of the lara bars, and flax seed hurts my stomach.

I agree with JodiC that you may need to have some testing done. I would also suggest B12 and thyroid.

I continued to have the fatigue and just not feeling well until I got a B12 shot 2 weeks ago. My B12 was at the low end of normal, but the B12 made a huge difference for me.

I agree with adding eggs for protein and calories if you can tolerate them.

I had to stop all supplements for a while, even though they were verified gluten free. I just had not healed enough to tolerate them. I was able to add them back later.

happygirl Collaborator
happygirl
Posted

Have you been to the doctor to be evaluated for common problems? (i.e., a check up with bloodwork, etc.) Might be a good place to start if you haven't taken that step yet.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,673
    • Most Online (within 30 mins)
      7,748
    LouH71
    Newest Member
    LouH71
    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

    • Rejoicephd
      Draft gluten-free ciders… can they be trusted ?

      By Rejoicephd · Posted

      That and my nutritionist also said that drinking cider is one of the worst drink choices for me, given that I have candida overgrowth.  She said the combination of the alcohol and sugar would be very likely to worsen my candida problem.  She suggested that if I drink, I go for clear vodka, either neat or with a splash of cranberry.   So in summary, I am giving ciders a rest.  Whether it's a gluten risk or sugars and yeast overgrowth, its just not worth it.
    • Inkie
      Tea Bags and Gluten

      By Inkie · Posted

      Thank you for the information ill will definitely bring it into practice .
    • Scott Adams
      Tea Bags and Gluten

      By Scott Adams · Posted

      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
      Inconclusive results

      By Scott Adams · Posted

      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
      Medication

      By Scott Adams · Posted

      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
×
×
  • 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.