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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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      I havesome of the replies to your post(which by the way is a gread piece of writing) and think that it will take lots of time and reading to decide what you are going to do. I would like to give you some practical suggestions. Your anxieties and OCD are a perfectly natural response when your body is sending signals that you have physical problems. The body does not use words it uses biochemistry and electric interactions. Celiac disease is not a killer disease so you are not going to die in the near future if you get glutened.  It can be a disabling problem unless you stay gluten free. For OCD attacks I have used spearmint or peppermint teas to relax. I also sitorlay down , relax as much as possible and review what I have been eating for the last few days and can usually identify that I have been eating too much of something and not enough of other foods that would balance my body. My body may have become too acid when it needs to be slightly alkaline. For me this means eating more vegetables and less starches and proteins. There are some websites that will list acid forming foods and alkaline forming food and many foods that are in between. Just admit that you are anxious about gluten being present in foods and anything that is used to prepare foods or even in your environment. When you eat anything that makes you anxious take a capsule of an anti-gliadin enzyme. I use a brand called GliadinX. It works in the stomach and will break down small amounts of gluten. Look up online the amount of plain water your body height and weight needs every day. Two years ago I was 5' 4" and weighed 100 lbs and needed 48 oz. every day.  Even if you can't drink the full amount if you just drink more water you will notice some improvement in your digestive system.  That's enough for tonight and it's way past my bedtime. Don't hesitate to ask more question or ask for more information.       
    • Scott Adams
      Canker sores can definitely be frustrating, especially when you're already managing a strict gluten-free lifestyle and have been diagnosed with celiac disease for so long. While these painful mouth ulcers aren’t exclusive to celiac disease, they can be linked to nutritional deficiencies—particularly of iron, folate, or vitamin B12 (as @trents mentioned )—which are common in people with celiac, even those who are very careful with their diet. Ongoing fatigue and aches might also suggest that your body isn’t fully absorbing nutrients or that there’s some underlying inflammation. It could be helpful to get bloodwork done to check for these deficiencies, and possibly even a full nutritional panel. Sometimes, new sensitivities or hidden sources of gluten or additives like sodium lauryl sulfate (common in toothpaste) can trigger symptoms like canker sores too. Since your reactions are so severe and you're highly vigilant, it might also be worth considering whether any other autoimmune conditions could be involved, as they can develop over time and overlap with celiac. Consulting with your doctor or a celiac-informed dietitian may help pinpoint the cause and bring relief.
    • knitty kitty
      @Dora77, You shouldn't worry about getting glutened through your skin.  You would have to touch a gluten infested doorknob and then put your hand in your mouth.   I'd be more concerned with your mom's heating up gluten bread in the oven and boiling gluten noodles.  These methods cause particles of gluten to become airborne which would then enter your nose and be swallowed, going into your digestive tract.  I have to avoid the bakery aisle at the grocery store for this reason.  An M95 mask helps. If you get nutritional deficiencies corrected, your immune system will calm down and be less reactive to gluten expose.  Vitamin D helps regulate the immune system.  Thiamine and Niacin help make digestive enzymes which would help digest any accidental gluten exposure.  Thiamine helps Mast cells not to release histamine, an inflammatory agent released as part of the reaction to gluten, and also a neurotransmitter that causes alertness and anxiety, and the flight or fight response.  Pyridoxine will help improve the OCD.  Remember your brain is part of the body.  Vitamin deficiencies affect your brain and mental health as well as the rest of your body.  
    • Jacki Espo
      I do not have evidence other than anecdotal but I am certain when I have gotten these it's the result of eating gluten (back when I did).  I don't get them now that I don't eat gluten. 
    • Dora77
      What really bothers me is if worrying about getting cc‘d from touching the same door knob as others touched is valid. Seems like an extremely unlikely way to get glutened but i read people saying that.    If thats true then theres realistically zero chance i dont get cc‘d in a non gluten-free household unless i Cook Everything myself and wash my hands multiple times in between and store all of my stuff separately
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