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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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    • I havent used it, not much of a baker tbh, but this one looks good: http://alittleinsanity.com/gluten-free-pie-crust-recipe/
    • As you say, there's no test, it's diagnosed by exclusion, so there's no metrics to check to assess compliance other than anecdotal response to symptoms. Conversely, I've not seen anything that says that NCGI can resolved or be cured either.  This paper gives a good summation.  Basically, there's not much research period! That is changing though, I think there's research underway which could help give answers.
    • First, do you have celiac disease?  Have you recently had a celiac antibodies follow-up blood test panel to see if gluten has been actually getting into your diet by accident or through cross contamination?  If you haven't had the test, you should ask your doctor for one.  You could also also ask for a follow-up endoscopy to see if you intestines have truly healed.  This will rule out if gluten is really the problem.    If you don't have celiac, I assume you have Non-celiac gluten Intolerance because no one would stick to the gluten-free diet for six years unless you have had reductions in symptoms.  There is no test for NCGI unfortunately.  So, it is hard to say if gluten has been sneaking into your diet.  You really are going to have to try to figure out if you are getting gluten into your diet.  If gluten is not the problem, then your doctor needs to check you for other issues, like SIBO. There is a test to check for SIBO.  Has this been done?   Once a celiac, always a celiac.  There is no cure for celiac disease except to remain on a gluten free diet for life.  I am not sure about NCGI.  Not much research has been done.  Maybe others can chime in?    
    • I am so confused right now.... 6 years ago I went on gluten free diet... after being on it for the first yr I was 100%better up until 5 months ago in got the "flu" the doctors told me to cut out dairy sonic did and my diarrhea  became better but not completely gone would not have it every day tho. I went to the gi doctor and they said to cut out fructose and dairy and keep gluten out... yesterday I went to the dietitian to see what I can eat and she gave me the list for fructose... she said it should have been on a antibiotic for sibo.... eventually I will be able to add dairy back and maybe gluten.... I said how can I add gluten back when this was my first problem... she goes well through fructose goes hand in hand with it... I said with gluten I vomit and am sick for weeks.... fructose isn't that bad I vomit sometimes but I'm not sick for weeks.... I'm just confused on really what is going on and was wondering if you or someone you know had sibo from gluten and or fructose and how Is this all related?
    • I see no one has responded to your query.  Unfortunately I have yet to try making a pie crust.  It was something I never mastered before going gluten free.  Have you looked on Pinterest?  You might find something there.
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