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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
      knitty kitty asks a very relevant question. So many people make the mistake of experimenting with the gluten free diet or even a reduced gluten diet soon before getting formally tested.
    • trents
      Another great fiber option is dried apricots. Four of them give you 3g of fiber and I find they don't produce all the gas that some other high fiber options do. They taste good too. Costco sells a large bag of them that are labeled gluten-free so you don't have to worry about cross contamination issues like you might in bulk grocery settings.
    • Trish G
      Wow, that's alot of info, Thanks!!!! I had my intake with Nutrionist where we went over basics and then will have follow up where we will talk about all the questions I've come up with (including the fiber question and so many more). I'll talk to her about the info you provided as well.  Thanks again (newbie here 😀)
    • Hmart
      Hello again. Thank you for the responses to date. I have had several follow-ups and wanted to share what I’ve learned. About a month after my initial blood test and going gluten free, my TtG went from 8.1 to 1.8. I have learned that my copper is low and my B6 is high. My other vitamins and nutrients are more or less in range. After I glutened myself on 10/24, I have been strict about being gluten free - so about a month. I have been eating dairy free and low FODMAP as well because it’s what my stomach allows. Baked fish, potatoes, rice, etc. Whole foods and limited Whole foods. I have continued to lose weight but it has slowed down, but a total of about 15 pounds since I went gluten free. Along with stomach pain, my symptoms included nausea, body and joint pain, a burning sensation throughout my body and heart rate spikes. I still have them but I have them less now. These are the symptoms that led to my doctor appointments and subsequent diagnosis. I also did the DNA screening and was positive. So, at this point, the answer is yes, I have celiac. I have two questions for this group. Any ideas on why my enteropathy was so severe (marsh 3B) and my TtG was so minimal? Is that common? Or are there other things to consider with that combo? And this recovery, still having pain and other symptoms a month later (7 weeks gluten free and 4 weeks after the glutening) normal? I’m going to continue down this path of bland foods and trying to heal but would love to understand the reasons for the long journey. I read so much about people who stop eating gluten and feel amazing. I wish that was my experience but it certainly hasn’t been. Thank you again!
    • knitty kitty
      @Trish G,  I like dates, they have lots if fiber as well.  But what I found helped most was taking Thiamine (in the form Benfotiamine which helps promote intestinal healing), Pyridoxine B 6, Riboflavin B 2, and magnesium, and Omega Three fats. The absorption of nutrients is affected by Celiac disease which damages the intestinal lining of the small intestines where our nutrients are absorbed.  If you have constipation, where your body is rather pushing your food away and not interacting with it, the nutrients in the food are not being released and absorbed.  You can develop deficiencies in all the vitamins and minerals necessary for the body to function properly.   The B vitamins cannot be stored for long, so they must be replenished daily.  Thiamine B 1 stores can run out in as little as three days.  Constipation (or diarrhea or alternating) is one of the first symptoms of thiamine deficiency.  Thiamine needs magnesium, Pyridoxine B 6, and Riboflavin B 2 to make the intestinal tract function.  Thiamine and Niacin make digestive enzymes.  Thiamine provides the energy for nerve impulses to carry messages to the brain and back about digestion.  Thiamine provides the energy for the muscle contractions which move your food through the digestive tract. High calorie meals containing lots of starches and sugars can deplete thiamine stores quickly because more thiamine is required to turn them into energy.   Are you taking any vitamin and mineral supplements?  Correction of malnutrition is very important in Celiac disease.  Thiamine, the other B vitamins and magnesium will help with constipation better than adding more fiber.  What did your nutritionist recommend you take, besides just the fiber? The association between dietary vitamin B1 intake and constipation: a population-based study https://pmc.ncbi.nlm.nih.gov/articles/PMC11100033/ Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Association between dietary vitamin B6 intake and constipation: a population-based study https://pmc.ncbi.nlm.nih.gov/articles/PMC11584952/
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