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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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    • trents
      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
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      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Are Bobresmill gluten free oats ok for sensitive celiacs?
    • jenniber
      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
    • trents
      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease does damage to the small bowel lining it often results in nutritional deficiencies such as anemia. NCGS does not damage the small bowel lining so your history of anemia may suggest you have celiac disease as opposed to NCGS. But either way, a gluten-free diet is in order. NCGS can cause bodily damage in other ways, particularly to neurological systems.
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