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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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    • trents
      Welcome to the celiac.com community @EssexMum! First, let me correct some misinformation you have been given. Except in the case of what is known as "refractory" celiac disease, which is very rare, it is not true that the "fingers" will not grow back once a consistently gluten free diet is adopted. Celiac disease is an autoimmune condition whereby the ingestion of gluten triggers an inflammatory process that damages the millions of tiny finger-like projections that make up the lining of the small bowel. We call this the "villous lining". Over time, continued ingestion of gluten on a regular basis results in the wearing down of these fingers which greatly reduces the surface area of this very important membrane. It is where essentially all the nutrition from what we eat is absorbed. So, losing this surface area results in inefficiency in nutrient absorption and often to medical problems related to nutrient deficiencies. Again, if a gluten-free diet is consistently observed, the villous lining of the small bowel should rebound. "We was informed that her body absorbs the gluten rather then rejecting it and that is why she doesn't react to the gluten straight away, it will be a build up and then the pains start. " That sounds like unscientific BS to me. But it does sound like your stepdaughter may have a type of celiac disease we know as "silent" celiac disease, meaning, she is asymptomatic or at least the symptoms are not intense enough to usually notice. She is not completely asymptomatic, however, because you stated was experiencing tummy aches off and on. Cristiana gives some good suggestions about ordering "safe" food for your stepdaughter from restaurant menus in Europe. You must realize that as the step parent who only has her part of the time you have no real control over how cooperative her other set of parents are with regard to your stepdaughter's needs to eat gluten free. It sounds like they don't really understand the seriousness of the matter. This is very common in family settings where other members are ignorant about celiac disease and the damage it can do to body systems. So, they don't take it seriously. The best you can do is make suggestions. Perhaps print out some info about celiac disease from the Internet to send them. Being inconsistent with the gluten free diet keeps the inflammation smoldering and delays or inhibits healing of the villous lining. 
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