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How Long Should I Try A Gluten Free Diet Befor I Determine Its Not Helping
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Hello everyone, I have been on a gluten free diet for about 4 weeks now. I had originally went on this diet because I am having the same symptoms and someone that may have a gluten sensitivity bad headaches, feeling very fatigued, joint pain, depression, numbness and foggy brain I was to a point where I couldn't get the word out of my mouth that I was trying to say and that's the point where I really started to research some things. I went to a neurologist and had an M.R.I. done all came back negative the Dr. said there is nothing wrong with me. Quite frankly I cant believe this so I started doing my own research since I wasn't going to get help from that Dr. I do plan on getting a second opinion done here soon, But none the less frustrating. So I found that pretty much all the symptoms that describe a gluten sensitive individual is everything I felt as well, so I thought I might as well give this a shot. I started this diet 2 weeks in I noticed that the numbness went away for the most part the pain still lingered the foggy brain hasn't shown its ugly face still fatigued and still had the headaches. So now 4 weeks in the numbness and the pain has been coming back more frequently and the headaches are still around foggy brain is still gone for now. But as the numbness and pain intensify and start showing up more often now it kind of makes me think am I really having to do this diet, and for the record I am not one of those people that cheat diets nor thinks its okay to cheat a diet especially with this kind of health dependency. I have been very strict with this hence why the frustration with it seeming like its not helping so high. I have done my research on the hidden gluten what to look for etc I actually try to buy only certified gluten free foods that say on the packages. I mean if all I have to do is change my diet to a gluten free one and it changes my life for the better because of this i'm all on board not just half way. Some places I read 6 weeks others say 6 months before you start to add wheat back into your diet to see if it affects you in a negative way, of course only if you feel like its not working for you. I definitely don't want to do this to soon because any chance that this is helping me I would hate to ruin that. At first I thought it was helping me, But not so sure anymore. Any help advise words of encouragement opinions would be much appreciated please. Thank you so much guys to all of you for taking the time to read my story and help with what you can.

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It's best to get tested for celiac disease first before making any dietary changes. I changed my diet before I even knew that I should be tested for celiac and by the time I wanted to pursue diagnosis, it was too late and I couldn't tolerate a gluten challenge. I had a rare and serious complication from reintroducing gluten and for my own health and safety had to go gluten free immediately, without a DX. It's mostly okay, but I will always wonder if I actually have celiac or not. 

 

Have you talked to your doctor about celiac tests? Even if you don't have celiac, testing for it is the first step in the diagnostic process because a diagnosis of NCGS (non-celiac gluten sensitivity) cannot be made without first excluding celiac as a possibility.

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As BlessedMommy said, testing is always recommended before starting a gluten free diet.  Following are the tests:
 
tTG IgA
tTG IgG 
DGP IgA
DGP IgG  
EMA IgG
Total IgA 
Endoscopic Biopsies
 
You must be eating gluten for 6-12 weeks for the tests to be accurate.
 
If you decide to continue with the gluten free diet you should give it 6 months to determine if it is helpful to you.  I would also suggest staying away from processed food and naturally gluten free food.  Read the Newbie 101 thread to learn the ins and outs of the diet.
 
Good luck either way.
 
Colleen
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If you do stay gluten-free, without testing, it seems most people need to give the diet at least 3-6 months before symptoms steadily improve.  Until then, it is often two steps forward nd one step back.... or more.  I personally felt much worse at 3 months gluten-free compared to how I did at 1 month or 6 months gluten-free.  It can take a long time.

 

There is also the problem that we often get "glutened" by accident in the first few months.  We get hit by soy sauce or even by a lotion that has gluten.  The first few months is when many of us make mistakes.  I know that I did.

 

It's a good idea to keep a food and symptoms journal to keep track of health changes too. Some improvements happen so slowly that it may not be noticed until you are reminded how bad it used to be (by a journal entry).

 

If you do get tested, and it's negative, but you find that the gluten-free diet has helped you in some ways, then it could be non-celac gluten sensitivity (NCGS). It's every bit as nasty as celiac disease. 

 

Best wishes.

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    • Hi Beachgrl, It won't hurt anything to go gluten-free now, except the possibility of getting a diagnosis of celiac disease.  When i went gluten-free, it seemed like the initial changes were spread over about 6 weeks.  I had gut spasms for that time.  And other changes, all for the better.  Initial recovery from celiac damage can take up to 18 months, so it can be a slow thing.  Some people get better much faster of course, because we are all individuals and not identical. Going gluten-free for celiac disease is a lifetime commitment though, and some people have a hard time doing that without a diagnosis.  Even minor amounts of gluten can cause us to react, so it is best to eat a very simple diet of whole foods at first.  Avoid dairy and processed foods.  I hope it works out for you.  I know some people with Crohns disease eat gluten-free and find it helps them.  Gluten is a tough thing to digest for all people, but most don't have an immune reaction to it like celiacs do.  
    • Honestly, I would not trust the school to provide a gluten-free meal except for fruit, salads, veggies, etc. I sub in a school cafeteria and I swear everything is breaded or on bread. Utensils are shared. They're very clean but unless you have a very knowledgeable person in there, I just wouldn't chance it. I found a slim Jim type snack that says gluten-free on it. If you want to give me your email or FB account, I can send you some very valuable info on 504's though. They carry the student right through college. I kept a copy of what a friend wrote about her daughter being in a sorority and just how the 504 helped immensely. But, I would definitely get one and still be prepared to pack a lunch. All our meals are delivered frozen and we just hear them up. If your school actually fixes food, that's different. 
    • Oh, I would suggest providing gluten-free goodies (e.g. Candy) or even a frozen cupcake (kept in the teacher's freezer) in the event of a party.  My daughter's classmate is severely allergic to peanuts.  Her mom did that and Abby was never left out!  😊
    • Hi Nobody, Welcome to the forum!  I noticed you said you have been avoiding wheat products.  That's good, but are you avoiding rye and barley also?  Wheat, rye, and barley are the 3 grains that cause reactions in celiac patients.  About 10% also react to oats. If you haven't had the full celiac antibodies test panel, it might be worthwhile getting that done now.  The ttg is just a basic test and is generally followed up by an endoscopy or the full celiac panel. I wouldn't worry a lot about getting cancer.  That doesn't happen often. It is possible some of the other grains you might be eating are contaminated.  A group did a test on several off the shelf products a few years ago that would not normally be thought of as having gluten and found some actually did have low levels of gluten.  Things like corn meal for example.    
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