Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

How Long Should I Try A Gluten Free Diet Befor I Determine Its Not Helping

snmr12

Recommended Posts

snmr12 Newbie
snmr12
Posted

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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


BlessedMommy Rising Star
BlessedMommy
Posted

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.

GF Lover Rising Star
GF Lover
Posted
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
nvsmom Community Regular
nvsmom
Posted

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.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      127,167
    • Most Online (within 30 mins)
      7,748
    RedheadedAshley
    Newest Member
    RedheadedAshley
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Dangerously underweight, Perfect gluten free and insomnia

      By trents · Posted

      So, you have three symptoms of a gluten-related disorder: weight loss, brain fog and lose stools. Of the three, the lose stools that firm up when you cut back on gluten is the only symptom for which you have reasonable cause to assume is connected to gluten consumption since the other two persist when you cut back on gluten. But since you do not have any formal test results that prove celiac disease, you could just as easily have NCGS (Non Celiac Gluten Sensitivity). In fact, what testing you have had done indicates you do not have celiac disease. NCGS shares many of the same symptoms of celiac disease but does not damage the lining of the small bowel as does celiac disease. There is no test for it. A diagnosis for NCGS depends on first ruling out celiac disease. It is 10x more common than celiac disease. Some experts feel it can be a precursor to the development of celiac disease. Eliminating gluten is the antidote for both. What muddies this whole question are two things: 1. Lack of official diagnostic data that indicates celiac disease. 2. Your persistence in consuming gluten, even though in smaller amounts. Your anxiety over the insomnia seems to outweigh your anxiety over the weight loss which prevents you from truly testing out the gluten free diet. What other medical testing have you had done recently? I think something else is going on besides a gluten disorder. Have you had a recent CBC (Complete Blood Count) and a recent CMP (Complete Metabolic Panel)? You say you don't believe you have any vitamin and mineral deficiencies but have you actually been tested for any. I certainly would be concerned with that if I was losing weight like you are despite consuming the high amount of calories you are.
    • trents
      False blood test positive?

      By trents · Posted

      Welcome to the forum, @AndiOgris! Recently upgraded guidelines for the "gluten challenge" recommend the daily consumption of at least 10g of gluten for at least 2 weeks to the day of testing to ensure valid testing, either for the antibody testing or the endoscopy/biopsy. 10g of gluten is roughly the amount found in 4-6 slices of wheat bread. So, there is a question in my mind as to whether or not your gluten consumption was intense enough to ensure valid testing the second time around. And was the tTG-IGA the only antibody test that was run? That is far from a comprehensive celiac panel. Concerning your negative biopsy, there is the possibility of patchy damage that was missed due to inadequate sampling as you alluded to. There is also the possibility that the onset of your celiac disease (if you have it) was so new that there had not yet been time to accumulate damage to the small bowel lining. Your total lack of symptoms at the time of diagnosis would seem to support this idea. Having said all that, and this is my informal observation from reading many, many posts like yours over the years, I wonder if you are on the cusp of celiac disease, crossing back and forth across that line for the time being. My suggestion would be to keep a close eye on this for the time being. Watch for the development of symptoms and request a more complete celiac panel a year from now. Here is an article that discusses the various antibody tests that can be run for celiac disease. Note: The EMA test is kind of outdated and expensive. It has been replaced by the tTG-IGA which measures the same thing and is less expensive to run.  
    • SaiP
      Dangerously underweight, Perfect gluten free and insomnia

      By SaiP · Posted

      Hi, yes. Much more solid and firm, as opposite to diarrhea like when on gluten.
    • AndiOgris
      False blood test positive?

      By AndiOgris · Posted

      Hi all I have had a very confusing year with celiac disease (or perhaps not as it turns out) and wondered if anyone can help me make sense of it? My mother was diagnosed with celiac disease (in her 70s) a couple of years ago. I am in my early 40s and did not have any symptoms, but I took a blood test in November 2023 and it came back positive (TTG IGA 23.4 U/ml - normal range is below 7 U/ml). I was referred for a gastroscopy to confirm, which was scheduled for October 2024 (I use the UK health service, things move slowly!). The gastroscopy found no evidence of celiac disease.  My gastroenterologist has asked me to retake the blood test, and it just came back negative (TTG IGA 1.6 U/ml - normal range is below 7 U/ml). Given the long wait between my initial positive blood test and my gastroscopy, I reduced my gluten intake but never avoided it fully. In the 6 weeks before the gastroscopy and the second blood test, I made sure to eat at least two slices of bread a day as recommended, and often I had significantly more.  So what's going on? I understand that false positives are very rare for celiac blood tests, and usually associated with other serious diseases which I am fairly sure I don't have (my health is generally very good). After the negative biopsy, I thought that (i) either they did not take enough samples, or (ii) I have "potential celiac disease". But now that the second blood test has come back negative, I'm running out of plausible explanations...  Can anyone make sense of this? I have not spoken to my gastroenterologist yet - I wanted to get a better sense of where I am beforehand so that I can ask the right questions. Under the UK system, specialist doctors can be very hard to get hold of, so I need to make the most of my time with him! Thanks!        
    • trents
      Dangerously underweight, Perfect gluten free and insomnia

      By trents · Posted

      Do you mean that your stools firmed up when you began to cut gluten from your diet?
×
×
  • Create New...