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What does this sound like?


Austintll

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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

 


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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

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    • Scott Adams
      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
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    • Butch68
      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
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    • Scott Adams
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