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

What does this sound like?


Austintll

Recommended Posts

Austintll Newbie

Basically my history is that I DID receive some gluten antibody tests (IGG or similar) years ago. They were slightly elevated when I used ranges online but basically I was told it was nothing and I clearly didn’t have celiac. I have not got bloodwork in years and I don’t foresee doing it any time soon unfortunately.

 

I have had a ton of issues with different foods over the years, getting progressively worse. It has been a huge learning curve. 
 

What I’m most curious about is my symptoms and if they sound similar to anyone else:

main:

Ataxia?( I HAVE ALWAYS felt just a bit off balance, it makes me almost constantly somewhat nauseous) - I might go as far as to say my vision sometimes goes in and out of focus (just got new prescription and astigmatism addressed so this could be related to ataxia? Not sure)

brain fog(no motivation and RARELY feel clear headed...like I’m always in a blur. I WANT deep inside to be going out and doing stuff but I often lay in bed despite a ton of physical energy.) - I always maintain a great physique however I am in the gym 4 days a week maintaining 205-210lbs with 6 pack abs!

indigestion/cramping

bloating/constipation/incomplete voiding bowels (I used to have a LOT of issues with voiding completely, to put it softly.) 

for now those are the main ones but the first two I would describe as debilitating because I used to be a very motivated and goal driven person.

Heart: after certain foods I will receive a massive increase in perceived heartbeat(palpitations. I am not sure if it is ACTUALLY elevated, usually 70-85 still when I’ve checked it) - this usually gives me a very anxious feeling

feeling of doom/depression- I guess you could say this ties in to the brain fog. Essentially it is as I describe it a feeling that I will have something bad occur. Cant describe better.

diet:

I have completely cut out gluten/dairy for the better part of two months. Massive improvements! I was doing great and rarely fell off. 
since I have been bulking at the gym, I usually eat 20-25 servings of oats (yes I eat 4000 calories from oats lol I walk 10+ miles a day for my job). On top of that I eat chicken thighs/olive oil for my fats and protein. At first I used regular oats, but last two weeks I have tried gluten free oats. 
 

the past month my symptoms have not really seen an improvement, I have either stalled or regressed to be honest.

SO: I am curious as to if these are relatable to someone else? I can imagine the oats were ok for a while but for one reason or another I am now having issues. 
A giveaway for me is how corn and rice effect me, I know wheat, rice, corn, AND OATS contain some forms of gluten, if not gliadin.

 

BASICALLY I just want to know if anyone sees Ataxia as a main symptom to glutening?? I feel as that symptom causes me to just feel in a very distraught mood, and it mixes with brain fog to give me a greatly depressed mood!

I would like any opinions lol

 


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



Celiac.com Sponsor (A8-M):



trents Grand Master

About 10% of celiacs react to even gluten free oats like they do wheat, barley and rye. Eliminating oats is where I would go next if I were you. Have you tried buckwheat? It's not wheat at all but related to rhubarb. Delicious and more nutritious than oats. Takes about 10 minutes to cook. If you're interested, make sure you purchase buckwheat that is gluten free, i.e., not cross contaminated. Amazon advertises gluten-free buckwheat.

All the ataxia, brain fog symptoms you describe are quite often listed as symptoms of celiac sufferers on this forum.

By the way, Austin. Welcome!

Austintll Newbie
6 minutes ago, trents said:

About 10% of celiacs react to even gluten free oats like they do wheat, barley and rye. Eliminating oats is where I would go next if I were you. Have you tried buckwheat? It's not wheat at all but related to rhubarb. Delicious and more nutritious than oats. Takes about 10 minutes to cook. If you're interested, make sure you purchase buckwheat that is gluten free, i.e., not cross contaminated. Amazon advertises gluten-free buckwheat.

All the ataxia, brain fog symptoms you describe are quite often listed as symptoms of celiac sufferers on this forum.

By the way, Austin. Welcome!

Awesome. Thanks for the idea I will have to figure out a substitute for a way to get 5000 calories a day without oats(so easy to use)! I will probably give buckwheat a try too. Wonder can I blend that up in some milk like I did oats? It looks to be the same amount of calories but I mind have to shell out quite a bit $$$ more than oats for that. Nothing is too expensive for good health though.

trents Grand Master

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
  • 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. - Scott Adams replied to Mihai's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      23

      Pain in the right side of abdomen

    2. - Heatherisle replied to Mihai's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      23

      Pain in the right side of abdomen

    3. - Heatherisle replied to Mihai's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      23

      Pain in the right side of abdomen

    4. - Scott Adams replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      how long does it take for the genetic blood test for celiac to come back?

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

    • Total Members
      133,667
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Scott Adams
      Vitamin B9 (Folate): The UL for Folic Acid is set at 1,000 mcg (1 mg) per day for adults. This limit primarily applies to synthetic folic acid found in supplements and fortified foods, not naturally occurring folate in food. High intake of folic acid can mask the symptoms of Vitamin B12 deficiency, which can lead to neurological damage if left untreated. This is because folic acid supplementation can correct anemia caused by B12 deficiency without addressing the underlying neurological damage. Some studies suggest that excessive folic acid intake might increase the risk of certain cancers, such as colorectal cancer, particularly in individuals who have precancerous lesions.
    • Heatherisle
      Hasn’t been given folic acid as GP says vit b and folic acid can’t be given together which I find strange cos any time I did venepunctures B12 and folate were always grouped together? Her folate level was 2.2, just below the normal level
    • Heatherisle
      Hi Thanks for your input. Don’t know which exact medication she’s on, keep asking but she keeps forgetting!!! I still think her Vitamin D levels might be low cos she had the back pain and tingling last year( around March /April) and levels were low so she had 3 month course then and it helped. She’s coming home next week (as in to ours) for a long weekend so hopefully some TLC from mum and dad will help!!!    
    • Scott Adams
      Genetic testing for celiac disease (the HLA-DQ2 and HLA-DQ8 genes) usually takes about 3–10 days to come back, depending on the lab your doctor uses, though some places may take up to two weeks. The test itself doesn’t diagnose celiac disease—it only shows whether you carry the genes that make celiac possible. About 30–40% of people have one of these genes, but only a small percentage actually develop celiac disease. However, if the test is negative for both genes, celiac disease becomes extremely unlikely, which is why your doctor mentioned possibly canceling the endoscopy if the result is negative. If it’s positive, it just means celiac remains a possibility and further testing, like a gluten challenge followed by endoscopy, helps confirm it. Since you have an identical twin, it’s definitely useful information to share if the genes are present, because twins share the same genetic risk. It sounds like you found a very thorough GI doctor, which is great, especially since she’s also monitoring nutrients and looking at the whole picture.
    • knitty kitty
      @Heatherisle, You're not a bother at all.   What "Vitamin B medication" is she taking?  Is it just B12 and folate?   All eight B vitamins, Vitamin D and other vitamins and minerals need to be supplemented because the malabsorption of Celiac disease affects all the nutrients.  All the B vitamins work together.  Just supplementing one or two can throw the other B vitamins out of balance causing worsening deficiencies in other B vitamins.  Doctors are undereducated about nutrition.  Heavy sigh. This is worrisome.  These are all symptoms of Gastrointestinal Beriberi caused by Thiamine deficiency.   An Erythrocyte Transketolace Activity Assay needs too be done to check her Thiamine level.  But because this test is so expensive and takes so long for the results to come back, it's much simpler to administer 500 mg Thiamine Hydrochloride several times a day for several days and look for health improvement (WHO recommendation).  Doctors can administer Thiamine Hydrochloride by IV along with a "banana bag" with all the B vitamins in it.  (Riboflavin gives it the yellow color.).  I've experienced vitamin deficiencies which my doctors didn't recognize.  When thiamine and B12 deficiencies started affecting my brain function, my doctors wrote me off as a depressed hypochondriac.  I had Gastrointestinal Beriberi myself.  I took over the counter thiamine hydrochloride at home and had health improvement within an hour.  High doses (500 mg) of Thiamine are needed to "jump start" the body into proper functioning.   Apologies if I was curt.  I get very frustrated because the nutritional deficiencies that occur with Celiac disease are not addressed properly.  All I can do is tell people about what I learned on my Celiac journey.  Have you visited my blog?  Tap on my name, look for pull down menu Activities and go to blog.   I do hope your daughter can get the nutritional support she needs.  I'm very worried.  Please keep us updated!
×
×
  • 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.