NeuroTalk Support Groups - how long does it take?

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Gluten Sensitivity / Celiac Disease (https://www.neurotalk.org/gluten-sensitivity-celiac-disease/)

- - how long does it take? (https://www.neurotalk.org/gluten-sensitivity-celiac-disease/51495-how-long-does-it-take.html)

how long does it take?

hi!
how long does it take for gluten free diet to work, and you begin to feel better?

I only have neuro symptoms, and I do not have confirmed celiacs.
I was tested nearly two weeks ago (standard blood work),
but am so sick of being sick
decided to do the veggie/raw/no wheat thing.......

so is it a matter of time that the gluten gets out of your system?
how does it work?

thanks,
lah

How long until you start to feel better if gluten is indeed a problem? That varies from person to person. For some they say mere days, for me it was 2-3 months. I had neuro and bowel symptoms. Change was very slow for me so it took time to realize things were better.

It takes two years for your intestines to heal completely but you will feel better looong before then if you are gluten sensitive or celiac. Your intestines will heal themselves as long as you follow the diet completely and don't cheat, even just a little bit.

My blood work always came back negative. I was finally diagnosed when I sent a stool sample to Enterolab. (enterolab.com) Gross I know but it gave me an answer I desperately needed.

I know just how you feel about being sick and tired of being sick and tired. :hug: Been there, done that, got the t-shirt made in every color.

This forum is chock full of good information free for the looking. Got more questions? Just ask. :)

WeaveHerr,
thanks,
for the vote of confidence! Sick stinks doesn't it?
but
I can be patient.......Goodness knows I've been sick for 5 years with neuro stuff, I can't heal up overnight....

How long have you been ill? and how long since you got dx with celiacs?

and what's been the hardest part for you?

What were your neuro complaints?

I don't have any bowel issues or rashes. I do know of a lady whose only problem was terrible arthritis in her feet, and it was celiacs. Luckily a podiatrist recognized it and she is fine now.

I already do not eat dairy, so cutting more stuff out isn't that much of a stretch for me.

thanks for listening,
lah

Well I don't know how short this is going to be but I'll try to give you the condensed version of my story.:D

One morning back in 12/02 I woke up with symptoms of a heart attack that slowly moved down my leg making it stroke like. A trip to the local ER revealed nothing. They kicked me out telling me I simply hyperventilated (baloney!:mad:) and sent me home with instructions.

A little over four years, two neuros (one from John Hopkins), two rhematologists, two general docs, and too many tests to remember (everything under the sun), I got my answer from Enterolab. My current rheumy's teen-aged daughter is celiac and a brother-in-law of his was diagnosed later in life. Personal experience made him keep looking at celiacs even though his tests said no.

I've read it takes an average of 11 or 13 (forget which) years for a celiac to be diagnosed. :eek: I had irritable bowel syndrome for several years before the neuro stuff hit. I don't really remember when the IBS started but would say I'm right in line with the average.

I have been gluten free for almost a year and a half now. Yes the diet is a pain but the alternatives are not worth it to me.

Wrapping my head around such a restrictive diet was very hard at first. Thankfully there is a local celiac support group and they have been a great help to me. This forum is also chock full of good stuff. The info in the stickied posts really helped me. I'm also lucky enough to live where finding gluten free foods is easy. Of coarse those foods are four times what I am used to paying and finding something that tastes good can be a challenge. GF foods can be a bit dry and or crumbly. Some companies are better than others. So far I have learned to avoid one company and trust several. Gluten is the number two most added ingredient. I'm still shocked at all the places it hides. :eek:

Dining out can be a challenge. I have learned to look up the website of chain restaurants as they usually have suggestions there for celiac diners. Eat and Park restaurant has a list on the back of their menu of safe meals. Always tell your server about your GF needs. Be prepared to give them a quick education. Some servers are knowledgeable and some have absolutely no clue. I've run into both.

Well I've blabbed on long enough. :D If there is a support group in your area they should be able to help you find good shops, foods, restaurants. Hope this helps. Feel free to ask more questions.

Hello. I've had a wide range of Celiac Disease-attributable symptoms over my life, possibly from "day one" [who knows, maybe fetal?] -- shifting slowly over the course of a couple decades -- beginning with abdominal/digestive maladies, and neurological problems and DH for the last year. I was in sorry shape by the time a friend recognized the possibility that gluten could be the culprit.

Two weeks after beginning a gluten-free diet, I was fine, for what seemed like the first time. For me, the severe/acute neurological problems [the ones that are usually giant red flags, like TIAs and seizures] ended immediately. The "brain fog" dissipated in days.

I noticed a few days ago that I still walk clumsily, but I can attribute this to a lack of exercise over these last few months. In a bit more time, it should pass, as my body/mind/stomach become "used" to performing activities [and absorbing nutrients] which may have been compromised... I'm no brain doctor, but I sure wish I were now. I wish I could give you the technical details instead of my anecdote...

It's been around three months now -- gluten free, dairy restricted, can't do raw plants easily, and vegetarian -- and despite an indescribable improvement in my health and in my perception of my well-being, I've noticed I seem MUCH more sensitive to gluten now. A couple energy drinks containing "caramel coloring" caused a nasty DH outbreak. Most alarmingly, I forgot to check the ingredients on a pre-made microwavable meal I irrationally consumed a couple days ago, and a few hours later, I caught myself a serious neuro episode, which seems to my amateur knowledge to have been a transient ischemic attack with seizures and near-paralysis, which fortunately only lasted a few hours.

I'd like to add that the meal [rice, tomato sauce with chicken -- I violated pretty much every rule of my diet there, but I felt starved due to another problem, one to be discussed elsewhere, although I feel it was caused by celiac disease] wasn't wheaty at all -- no noodles, no side of toast. I could taste the chicken, in all honesty, but once the meal was opened, the bird was already dead at my feet. :P

I've been to many a doc and hospital, they are simply perplexed with me. I have NO diagnoses.

The neurological symptoms have been the most persistent for me [other than the residual eosinophilic dermal deposits], but I have noticed undeniable improvement.

Good luck -- and I mean it. I think you're doing absolutely the right thing by trying it. I had no idea how little gluten it took to cause problems for me, and if you have no other less severe indicators [I feel LUCKY to have this annoying rash sometimes], I think you should do a few weeks on an informed and cautious gluten-free diet before you make up your mind... But I think EVERYone should do that -- in my unprofessional opinion, it's the only way to know.