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. - JoJo0611 replied to JoJo0611's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      CT with contrast.

    2. - Scott Adams replied to Ginger38's topic in Related Issues & Disorders
      2

      Shingles - Could It Be Related to Gluten/ Celiac


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,398
    • Most Online (within 30 mins)
      7,748

    Megannnnn
    Newest Member
    Megannnnn
    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

    • JoJo0611
      I didn’t know there were different types of CT. I’m not sure which I had. It just said CT scan with contrast. 
    • Scott Adams
    • Scott Adams
      I had the same thing happen to me at around your age, and to this day it's the most painful experience I've ever had. For me it was the right side of my head, above my ear, running from my nerves in my neck. For years before my outbreak I felt a tingling sensation shooting along the exact nerves that ended up exactly where the shingles blisters appeared. I highly recommend the two shot shingles vaccine as soon as your turn 50--I did this because I started to get the same tingling sensations in the same area, and after the vaccines I've never felt that again.  As you likely know, shingles is caused by chicken pox, which was once though of as one of those harmless childhood viruses that everyone should catch in the wild--little did they know that it can stay in your nervous system for your entire life, and cause major issues as you age.
    • trents
    • Clear2me
      Thanks for the info. I recently moved to CA from Wyoming and in that western region the Costco and Sam's /Walmart Brands have many nuts and more products that are labeled gluten free. I was told it's because those products are packaged and processed  in different  plants. Some plants can be labeled  gluten free because the plant does not also package gluten products and they know that for example the trucks, containers equipment are not used to handle wheat, barely or Rye. The Walmart butter in the western region says gluten free but not here. Most of The Kirkland and Members Mark brands in CA say they are from Vietnam. That's not the case in Wyoming and Colorado. I've spoken to customer service at the stores here in California. They were not helpful. I check labels every time I go to the store. The stores where I am are a Sh*tshow. The Magalopoly grocery chain Vons/Safeway/Albertsons, etc. are the same. Fishers and Planters brands no longer say gluten free. It could be regional. There are nuts with sugar coatings and fruit and nut mixes at the big chains that are labeled gluten free but I don't want the fruit or sugar.  It's so difficult I am considering moving again. I thought it would be easier to find safe food in a more populated area. It's actually worse.  I was undiagnosed for most of my life but not because I didn't try to figure it out. So I have had all the complications possible. I don't have any spare organs left.  No a little gluten will hurt you. The autoimmune process continues to destroy your organs though you may not feel it. If you are getting a little all the time and as much as we try we probably all are and so the damage is happening. Now the FDA has pretty much abandoned celiacs. There are no requirements for labeling for common allergens on medications. All the generic drugs made outside the US are not regulated for common allergens and the FDA is taking the last gluten free porcine Thyroid med, NP Thyroid, off the market in 2026. I was being glutened by a generic levothyroxin. The insurance wouldn't pay for the gluten free brand any longer because the FDA took them all off their approved formulary. So now I am paying $147 out of pocket for NP Thyroid but shortly I will have no safe choice. Other people with allergies should be aware that these foreign generic pharmaceutical producers are using ground shellfish shell as pill coatings and anti-desicants. The FDA knows this but  now just waits for consumers to complain or die. The take over of Wholefoods by Amazon destroyed a very reliable source of good high quality food for people with allergies and for people who wanted good reliably organic food. Bezos thought  he could make a fortune off people who were paying alot for organic and allergen free food by substituting cheap brands from Thailand. He didn't understand who the customers were who were willing to pay more for that food and why. I went from spending hundreds to nothing because Bezo removed every single trusted brand that I was buying. Now they are closing Whole foods stores across the country. In CA, Mill Valley store (closed July 2025) and the National Blvd. store in West Los Angeles (closed October 2025). The Cupertino store will close.  In recent years I have learned to be careful and trust no one. I have been deleberately glutened in a restaurant that was my favorite (a new employee). The Chef owner was not in the kitchen that night. I've had  a metal scouring pad cut up over my food.The chain offered gluten free dishes but it only takes one crazy who thinks you're a problem as a food fadist. Good thing I always look. Good thing they didn't do that to food going to a child with a busy mom.  I give big tips and apologize for having to ask in restaurants but mental illness seem to be rampant. I've learn the hard way.          I don't buy any processed food that doesn't say gluten free.  I am a life long Catholic. I worked for the Church while at college. I don't go to Church anymore because the men at the top decided Jesus is gluten. The special hosts are gluten less not gluten free. No I can't drink wine after people with gluten in their mouth and a variety of deadly germs. I have been abandoned and excluded by my Church/Family.  Having nearly died several times, safe food is paramount. If your immune system collapses as mine did, you get sepsis. It can kill you very quickly. I spent 5 days unconscious and had to have my appendix and gall bladder removed because they were necrotic. I was 25. They didn't figure out I had celiac till I was 53. No one will take the time to tell you what can happen when your immune system gets overwhelmed from its constant fighting the gluten and just stops. It is miserable that our food is processed so carelessly. Our food in many aspects is not safe. And the merging of all the grocery chains has made it far worse. Its a disaster. Krogers also recently purchased Vitacost where I was getting the products I could no longer get at Whole Foods. Kroger is eliminating those products from Vitacost just a Bezos did from WF. I am looking for reliable and certified sources for nuts. I have lived the worst consequences of the disease and being exposed unknowingly and maliciously. Once I was diagnosed I learned way more than anyone should have to about the food industry.  I don't do gray areas. And now I dont eat out except very rarely.  I have not eaten fast food for 30 years before the celiac diagnosis. Gluten aside..... It's not food and it's not safe.  No one has got our backs. Sharing safe food sources is one thing we can do to try to be safe.        
×
×
  • 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.