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Just Want To Feel Better


gluten-is-kryptonite

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gluten-is-kryptonite Apprentice

I am still pretty new here. Diagnosed 4 months ago. Felt better pretty quickly on the Gluten-Free diet but still had "reactions". I found out theses reactions were due to leaky gut. Anyhow my first 3 months were pretty up and down but the 4th month was sheer heaven - until a week ago. I had french fries that were fried in the same oil as gluten foods. I knew this was an experiment- but I am not feeling better a week later. It must have really inflamed my gut. I am really upset about this and have no energy to do anything. I feel like I have a flu like symptoms. Just days before I was on top of the world at a race- got on the podium, had a major breakthrough and set a new personal best. I know I am on the right track overall but just feel like I took a huge step backwards. I went from that to not enough energy to get out of bed.

For the leaky gut I am taking-

glutamine

high quality fish oil

turmeric (just started)

culturelle

aloe vera juice

b complex

glutathione

muiltivite w/ iron

what am i missing? I think the autoimmune reaction from food leaking out of the gut is attacking my thyroid (at one point had a mis-diagnosis of hypothroid). My thyroid was a bit low but was not the cause - celiac is the cause of all this. should I be adding something for my thyroid?

Just want to feel better. I know I'm rambling but I can't talk about this stuff with people who don't understand and I know how good it feels when things are going well (didn't know what that felt liek until about a month ago). I was undiagnosed for many years.


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mushroom Proficient

Reactions for some people can last longer than a week; next time you are tempted to live dangerously realize that you may suffer from it for a long time. There is nothing like experience to learn from.

Did you have a full thyroid work-up or just TSH, free T3 and T4, or maybe just TSH? Doctors are often reluctant to do full thyroid testing.

One thing you might add to your supplement regimen are some digestive enzymes to help break down your food. Celiac can negatively impact the ability of the pancreas to produce enough enzymes.

Hope you are feeling better soon and that you have learned the cross-contamination lesson ;)

pricklypear1971 Community Regular

When I'm glutened sometimes I must lay off the vitamins a while. Probiotics, enzymes yes. Vitamins, D's, iron - no.

Just a thought. Gives me nausea and makes me feel gross and exhausted. When my stomach settles down I start them back up.

Did they test you for Hashimotos? if you had a high tsh and are Hashis gluten-free may help but I doubt it will fix it, judging by others experiences (and mine). If your thyroid function has degraded to a certain point you need thyroid replacement. Hypothyroidism can cause extreme exhaustion, and it can be barely out of whack and give you terrible symptoms.

I've been glutened about 4 times since going gluten-free (that I know of). One time it set off an AI attack that lasted 2 months. I figured out (because my seasonal allergies got bad during this time) that antihistimines helped snuff down the ai attack. I took 1 children's Claritin every day, then every other day for a few months. It really helped. My ND wasn't thrilled with my solution but I weaned off them.

My other attacks have lasted a few weeks.

Btw blood work during that ai attack supported the ai attack theory. My TPO antibodies went up, tsh went sky high, crp elevated...I was a mess. Just had new blood work done and will find out results next week.

eatmeat4good Enthusiast

Yeah learning about cross-contamination is a hard lesson.

I tested french fries, then kissing a gluten eater, then products made on shared lines but with no gluten ingredients. Ugh to all of them. The reaction lasts weeks and it is hard to get out of bed and I can't wait to get back into it. I can't take all my vitamins either when healing. After a week or two I can.

I hope your reaction doesn't last long and you can stay gluten free.

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    • catnapt
      so do you have celiac or not? 🤔 why are your vision issues undiagnosed? 😢 what does your ophthalmologist say?  do you have a serious vit A deficiency? what do you take for it? how long have you had celiac disease and how long did  it take to get a diagnosis?   if you are legally blind there are adaptive devices that will help you. I have vision difficulties as well but did not qualify (at least not yet)   do you have a vit A deficiency? why are you undiagnosed? what does your ophthalmologist say? I have a retinal specialist and he tells me my eye condition can not be fixed- until/unless it gets to the point of where surgery is safer since the surgery can leave me actually blind... so you want to wait til it gets really bad 🤪     I hope you find what works for you.    PS   the medication I started at the same time as the gluten challenge is obvious from the condition it's trying to treat. you can google it 😉 it is not an for any auto immune condition.   
    • knitty kitty
      @catnapt,  I apologize.  Obviously I've confused you with someone else.  I have vision problems due to undiagnosed Celiac complications.  Being legally blind, y'all look the same from here.   You still have not said which new medication you started taking.  Parathyroid disorders can affect antibody production.  Bone Loss Correlated with Parathyroid Hormone Levels in Adult Celiac Patients https://pubmed.ncbi.nlm.nih.gov/36619734/ Effect of vitamin B1 supplementation on bone turnover markers in adults: an exploratory single-arm pilot study https://pmc.ncbi.nlm.nih.gov/articles/PMC12075007/
    • catnapt
      during the gluten challenge I did not consume any wheat germ   the wheat germ is TOASTED - it's the only way it is sold now afiak doesn't matter I consume vast amounts of lectin containing foods PROPERLY prepared and have for well over a decade. They do not bother me in the least.    no anemia however the endo who ordered the celiac panel is the one who suggested the 2 week gluten challenge of eating at least 2 slices of bread per day or a serving of pasta- ALSO put me on a new drug at the same time (not a good idea)  I ate 4 slices because they were thin, or 2 English muffins, and just once some lasagna that someone else made since I stopped eating wheat pasta years ago. The English muffins caused some of the worst symptoms but that pc of lasagna almost killed me ( not literally but the pain was extreme) during those 12 days there were at least 3 times I considered going to Urgent Care.   This entire process was a waste of time TBH due to being on that new drug at the exact same time. it is impossible to tell if the drug I am taking for the possible renal calcium leak is working or not- given the dramatic response to the gluten challenge and resulting nausea (no vomiting) and eventually a loss of appetite and lower intake of foods so now I have a dangerously low potassium level   I don't have a simple case of celiac or no- I have an extremely complicated case with multiple variables I am seeing an endocrinologist for a problem with the calcium sensing glands - that system is very complicated and she has been unable to give me a firm diagnosis after many tests with confusing and often alarming results. She also appears to be inexperienced and unsure of herself. but I don't have the luxury of finding a new endo due to multiple issues of insurance, lack of drs in my area, money and transportation. so I'm stuck with her At least she hasn't given up    in any case I can assure you that lectins are not and never were the problem. I know they are a favorite villain in some circles to point to, but I have ZERO symptoms from my NORMAL diet which DOES NOT contain gluten. The longer I went without bread or foods with wheat like raisin bran cereal, the better I have felt. my body had been telling me for several years that wheat was the problem- or maybe specifically gluten, that remains to be seen- and stopping eating it was the best thing I could have done   I almost had unnecessary MAJOR SURGERY due to joint pain that I ONLY have if I am eating bread or related products I assumed it was the refined grains - never really suspected gluten but it does not matter I won't put that poison in my body ever again not that it is literally poison but it is def toxic to me        
    • knitty kitty
      @catnapt,  I'm sorry you're having such a rough time.   How much wheat germ and how much gluten were you eating? Lectins in beans can be broken down by pressure cooking them.  Do you pressure cook your beans?  Were you pressure cooking your wheat germ? What drugs are you taking?  Some immunosuppressive drugs affect IgA production.  Do you have anemia?
    • catnapt
      oops my gluten challenge was only 12 days It started Jan 21s and ended Feb 1st   worst 12 days of my life   Does not help that I also started on a thiazide-like drug for rule in/out renal calcium leak at the exact same time No clue if that could have been symptoms worse 🤔
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