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

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

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

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
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

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

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

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
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
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
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

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

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

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.

  • 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. - trents replied to Ello's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Small Bowel Resection 12 inches

    2. - Ello replied to Ello's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Small Bowel Resection 12 inches

    3. - trents replied to Ello's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Small Bowel Resection 12 inches

    4. - Ello replied to Ello's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Small Bowel Resection 12 inches

    5. - trents replied to Ello's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Small Bowel Resection 12 inches

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

    • Total Members
      132,833
    • Most Online (within 30 mins)
      7,748

    Grandma13
    Newest Member
    Grandma13
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • trents
      You might consider asking for a referral to a RD (Registered Dietician) to help with food choices and planning a diet. Even apart from any gluten issues, you will likely find there are some foods you need to avoid because of the shorter bowel but you may also find that your system may make adjustments over time and that symptoms may improve.
    • Ello
      I wish Dr’s would have these discussions with their patients. So frustrating but will continue to do research. Absolutely love this website. I will post any updates on my testing and results.  Thank you
    • trents
      Losing 12" of your small bowel is going to present challenges for you in nutritional uptake because you are losing a significant amount of nutritional absorption surface area. You will need to focus on consuming foods that are nutritionally dense and also probably look at some good supplements. If indeed you are having issues with gluten you will need to educate yourself as to how gluten is hidden in the food supply. There's more to it than just avoiding the major sources of gluten like bread and pasta. It is hidden in so many things you would never expect to find it in like canned tomato soup and soy sauce just to name a few. It can be in pills and medications.  Also, your "yellow diarrhea, constipation and bloating" though these are classic signs of a gluten disorder, could also be related to the post surgical shorter length of your small bowel causing incomplete processing/digestion of food.
    • Ello
      Yes this information helps. I will continue to be pro active with this issues I am having. More testing to be done. Thank you so much for your response. 
    • trents
      There are two gluten-related disorders that share many of the same symptoms but differ in nature from each other. One is known as celiac disease or "gluten intolerance". By nature, it is an autoimmune disorder, meaning the ingestion of gluten triggers the body to attack it's own tissues, specifically the lining of the small bowel. This attack causes inflammation and produces antibodies that can be detected in the blood by specific tests like the TTG-IGA test you had. Over time, if gluten is not withheld, this inflammation can cause severe damage to the lining of the small bowel and even result in nutrient deficiency related health issues since the small bowel lining is organ where all the nutrition found in our food is absorbed.  The other is NCGS (Non Celiac Gluten Sensitivity or just "gluten sensitivity") which we know less about and are unsure of the exact mechanism of action. It is not an autoimmune disorder and unlike celiac disease it does not damage the lining of the small bowel, though, like celiac disease, it can cause GI distress and it can also do other kinds of damage to the body. It is thought to be more common than celiac disease. Currently, we cannot test for NCGS. Celiac disease must first be ruled out to arrive at a diagnosis of NCGS. Both disorders require elimination of gluten from the diet.  Either of these disorders can find their onset at any stage of life. We know that celiac disease has a genetic component but the genes are inactive until awakened by some stress event. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% develop active celiac disease. The incidence of NCGS is thought to be considerably higher. I hope this helps.
×
×
  • 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.