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Brand New Celiac


TheLibertarian

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TheLibertarian Rookie

Hi. I am a brand new poster at this board. I am 25, a nurse aid (soon to be a pharmacy tech,yay!), I live in the beautiful Denver area, and I have suffered from symptoms of Celiac for about 3 long years but have only recently been diagnosed.

I also had a question:About how long after you stop eating gluten do your symptoms start to subside?


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jrom987 Apprentice

Hi!

I can't answer your question for sure as I am new too but I have heard everything from weeks to months. I have been gluten free for 2 weeks. I hope I feel better soon!

There is an abundance of information here. I have found it extremely helpful. These wonderful people know more than most of the doctors do.

Good luck!

KaitiUSA Enthusiast

It varies from person to person. Some people see improvement quick and for others it takes alot longer. It depends on damage and so forth.

jenvan Collaborator

hey! welcome--glad you've joined us :) that is a bit of hard question. it can vary person to person. many times is depends on how long you've suffered from the disease. many here felt noticeably better within a few months. as for myself, i am about 9 months gluten-free and am still waiting to feel a great improvement in my energy and muscle pain. i think one of the first things people notice is improvement in their diarrhea or constipation. i had improvement with that within a few months. make sure you are cked out for deficiences etc, to make sure you do improve as quickly as possible. you will feel better though...it just takes longer for some of us. a nurse i am working with (who has celiac) said 2 years is a reasonable time to really feel "normal again." but do be encouraged, you will probably notice some improvements quickly, it just may take longer for a "complete recovery," so to speak. what are your symptoms?

skoki-mom Explorer

Just wanted to say welcome :) I never had symptoms, so I can't answer your question from experience, but it seems to vary from person to person.

Ursa Major Collaborator

I felt I an almost instant improvement, even though I was sick all my life, and severely ill all summer. My diarrhea stopped the day after starting the gluten-free diet, the terrible backpain started getting better the second day, and the awful muscle and joint pains improved so much within two weeks that I could stop the codeine I was on 24 hours a day (I have to take it occasionally now, maybe once a week). The bad stomach ache went away after a week, but comes and goes still. My feet and hands aren't swelling at all any more. My scalp stopped being itchy all the time when I switched from a product containing wheat germ to one that's gluten-free.

After reading how long it took for others here to start feeling better, I guess I am an exception.

jmarie Newbie

Hi there. I have been gluten-free for six months, and I notice that symptoms are a little tiny bit better each month. It's been a long month, and according to my gi, my intestines are still quite extensively damaged. I had been sick for 12 years, though, so I was really quite sick by the time I was diagnosed.

Maybe if you're diagnosed early enough, it will be quicker? It's amazing to me that some people are saying it only took a few weeks. That has certainly not been my experience.


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FaithInScienceToo Contributor

Welcome, Newbie!

It took about 3 days before I started to feel better...within 2 weeks I knew I had my answer!

I don't know how long it wil take for my leaky gut to heal, though...

Going gluten-free wasn't enough to erase all digestive problems....although I feel like the spittin' image of health now compared to how I felt pre-gluten-free ...

I am now beginning my journey into trying to COMPLETELY heal my gut...I am now learning about inflammation, probiotics, enzymes, amino acids, etc....

Hope you'll also find here all of the info you'll need along your journey.

Love, Gina

4getgluten Rookie

You will learn so much on this board! I know I did. Everyone is different. I felt better within a few days, but I didn't start to feel REALLY good until 2 months ago (six months into the diet). I don't think I'm back to 100% yet, but I'm almost there. Hang in there. You will probably have good days and bad days.

TheLibertarian Rookie
:D Thank you! I have been gluten-free for about a week and I have noticed some improvements. My stomach pain has been much better but I still have occasional bouts of cramping and diarrhea. The severe fatigue I have been experiencing still comes and goes. I still have a few episodes a day where I just want to lie down and go to sleep.

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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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