Gluten-Free For How Long?

[LeahRuth]

Hello Everybody! This is my first time visiting the site. I found all of the responses to threads I read to be very helpful so I joined! I have one question for as many of you who would like to answer-for starters. How long should I avoid gluten to see if I have an intolerance? Will I feel better in 2 weeks? A month? How do I go about "self-diagnosing" at this preliminary point? Tell me what you would do/what you did. 

 

Here's some background:

 

I'm in my early twenties and don't have kids or any health conditions. I've never had anything ongoing except mild asthma as a kid and can be easily susceptible to sinus infections. I starting getting carsick when I was about 10 though and it's gotten a bit worse the past few years, (I think because I traveled and rode a lot of foreign transportation.). 

 

In the middle of January I ate some spinach enchiladas at a Mexican restaurant for a wedding rehearsal dinner. The next day I was woken by intense abdominal pain and a fever until I was able to "empty myself out." I was nauseas the rest of the day and avoided eating. Pain meds, mints and Pepto-Bismal didn't have any effect. 

 

After a few days of not eating much but crackers and juice I slowly returned to regular eating habits but the bloating and irregularity continued. And by bloating I mean I felt like there were babies blowing balloons in my intestines. So after about 2 weeks of trying Kiefer and other probiotics I quit dairy and started to feel less crampy and bloated. I avoided lactose for the next 2 weeks and felt great for 1 whole day until the next morning when the process started over. 

 

After the enchiladas I had assumed food poisoning. (You've seen Bridesmaids? Yeah, I was a bridesmaid...til I had to leave during the vows so I didn't vomit. When I did, it didn't help.). On the second round I went to Urgent Care and was told I had coincidentally gotten a viral infection-twice. Because I'm a nanny. After waiting a week and still not returning to normal, I cut out gluten for about a week and also added spinach to the Enemy Number 1 list as the tiniest amount gave me bad cramps and you guessed it, bloating. I had yet to throw up from any of this since the time that I made myself on the day of the wedding but I was crabby, fatigued and irregular consistently.

 

The results were that any minimal exposure to dairy after that caused intense cramping less than an hour and D, gas, and bloating. Avoiding gluten seemed to clear up my fatigue and unusual grouchiness while reducing the severity of my other symptoms. Unfortunately, I still had a little cramping the past few days and the bloating wasn't gone so I decided to try some gluten again and see what happened. I had some organic fig bars yesterday and organic bread this morning. Eventually I developed some light cramping today and more bloating-though not severe like before. My mother has IBS and recommended I stop eating tomato; I did have pasta sauce the past couple of days. 

 

I'm tired. I didn't even believe this many people could have a gluten intolerance and now it's raining on my parade daily. I'm humbled, but I want answers. Apart from finding a primary care physician and getting some tests done, what do you recommend I do? It's only been 2 months since my issues started but I'm willing to do whatever it takes to get some answers. (Besides blowing all my savings at the doctor. Not yet.) How long should I avoid gluten before I see results? Should I look at other possible irritants?

 

I really appreciate all the feedback and the time you took to read and respond! Thank you! 

 

Sincerely,

 

Leah 

[MycasMommy]

The best thing you can do is see a doctor and get a diagnosis.  You should mention your mom has IBS, that is what a lot of people get told when they cannot figure out what is wrong. Alas, you need to be eating gluten to have the tests done. If you do not, you will never get a positive or negative result you can rely upon. I wish wish wish wish I had a formal Dx.  I cannot get one because I vomit anything with gluten in it so it kind of sucks.  A lot... As far as how long has it taken me to feel better? Close to 2 years now.  I was very sick for a long long time though.

[notme]

i agree.  you need to see a doctor and get tested if you think you have celiac.  it does require that you stay 'on' gluten to have accurate test results, but more importantly, a doctor can test to rule out other things that can cause the same symptoms but need different treatment.   

[Jays911]

Agreed. Get tested, but stay the course on gluten until then. If it is celiac, changing your diet thereafter will be a fame changer.

[BlessedMommy]

Yes, please get tested. I cannot get a formal diagnosis because gluten causes me severe neurological symptoms. I really wish that I had gotten properly diagnosed before going gluten free. 

[nvsmom]

Yes.  Get tested asap.  If you are gluten-free for a long time, you will need to resume eating gluten for 2-3 months prior to testing!  That is a long time to make yourself sick for a diagnosis.  Better to stay on gluten for a week or so until you can get the tests done, and then go gluten-free (unless you are also having the endoscopic biopsy done).

 

These are the tests:

• tTG IgA and tTG IgG (tissue transglutaminase) - most common tests
• DGP IgA and DGP IgG (deaminated gliadin peptides)
• EMA IgA (endomysial antibodies)
• total serum IgA - control test
• AGA IgA and AGA IgG (anti-gliadin antibodies) - older and less reliable tests largely replaced by the DGP tests
• endoscopic biopsy - 6+ samples taken

None of these tests will catch all celiacs so you best chance at an accurate diagnosis is to get as many tests done as possible.

 

If the tests are negative for celiac disease, you may still have non-celiac gluten sensitivity (NCGS) so trying the gluten-free diet is a good idea.

 

After you go gluten-free, it could take anywhere between days or months before you start to feel better, and it may take as long as a few years before you are as recovered as you can get.  I think those with NCGS tend to recover a bit faster than a celiac would after going gluten-free, but that isn't always the case.  Most people start feeling better within a month of eating gluten-free, with "start" being the key word.

 

Welcome to the board.  

[ravenwoodglass]

In addition to getting tested for celiac make sure the doctor does stool testing to rule out any possible other causes. Some food borne infections/parasites need antibiotics or other meds to fully clear up. 

Hope you get some answers soon and are feeling better. 

[LeahRuth]

Thank you all! I really do appreciate the responses. Unfortunately, as I mentioned, I can't afford to do a bunch of tests right now. I'm a broke college student with pathetic insurance for the time being. The need for gluten in the diet to start testing is a concern for me, but I really just want to stop feeling like this. I'm not willing to keep eating gluten for the next several months or years until I can afford to get a bunch of tests done. I nanny so I can't just sit on the couch all curled up with stomach aches all the time. So it's not a simple issue for me.

 

I'm wondering how many of you have tried a gluten-free diet on your own and found it to be useful? What are some good resources for learning more about types of gluten-intolerances and ways of responding to them?

 

Thanks again!

[cyclinglady]

My husband is an unconfirmed celiac who went gluten-free over the poor advice from both his GPA and my allergist. He has been gluten-free for 14 years. I am still new -- diagnosed two years ago.

You can go gluten-free! Please do your research and learn about hidden sources of gluten and cross contamination (like kisses from gluteny toddlers or kissing a guy who just consumed a sandwich). Our Newbie 101 thread under our "Coping" section is a great place to start.

Give it six motnths. It sounds like celiac disease but the way it came on with fever and intestinal pain, etc. It sounds more like a parasite to me, but I am not a doctor. That would require prescription drugs to resolve.

I wish you well.

[Zebra007]

I have unconfirmed Gluten intolerance because  I just had to stop eating anything that I suspected had Gluten in it as I had gone from being one of those people with a lovely flat stomach, to looking like I was five months pregnant!, that said I do wish I had had a firm diagnosis, it would make me feel better somehow, but really it is what it is and I think you must do what you feel happy with.  It does sound as thought you might be Gluten Intolerant.  Not sure what you are now doing regarding Dairy, but its worth mentioning that sometimes people that are Gluten intolerant can also be Casein intolerant, the protein found in Dairy.

 

When I first started feeling unwell last year I purchased a small vial of medicine from the chemist which kills any parasites, (I have three dogs) and so  I felt it was important to rule that out, and these hardly cost anything and are very effective medications to treat parasites....just something to consider.  

[Sunshine Sassie]

Hi LeahRuth, I am sorry you are feeling so unwell and it sounds like you are in tough situation since all of these tests are so expensive. I am also in my early twenties and have spent years without insurance until recently; it is very frustrating 

 

I have been following this board for almost a year and I hope it can help you like it has helped me. I am awaiting the results of my endoscopy and have not been officially diagnosed so I know how much it stinks to not know what is wrong with you. If you can continue to eat gluten it will help speed up your testing process. I made the mistake of going gluten free before testing and I will say it is physically and mentally harder to go back to eating after you've stopped.

 

I hope you can find some answers and start feeling better.

[TriticumToxicum]

Hi LeahRuth,

 

I went gluten-free on my own last summer. Not because I suspected I might have a real gluten-intolerance or celiac, but because I had noticed a few years ago that gluten-free food was much lighter on my stomach than normal bread. Back then I was a college student and couldn't afford to go completely gluten-free and finally gave it up again after a while. But now the situation is better, so I decided to do myself a favor and eat gluten-free again. 

 

Last summer it took 4 weeks of completely gluten-free until I had a completely different life. I was suddenly energetic, happy and my life was no longer controlled by my stomach. I actually took a week-long trip with a friend, which I would have never done before, because I was always scared of serious stomach-troubles hitting me. 

 

When I finally suspected that gluten could have made a much bigger difference in my life, I talked to my GP and started a 4-months gluten challenge. Luckily, this coincided with the holidays, which made it easier in a way. 

I got my blood tests and endoscopy results last week and it is all negative.   Four months should have been enough and I did eat enough gluten. I definitely had all my symptoms back, even some that I would have never connected to food. But it was not as bad as I've known them to be before. I do have the gene (not the high-risk one (DQ2), but the lower risk one (DR4-DQ8). 

 

I now wish I had gotten the test when I was feeling really sick and was losing a lot of weight. Definitely go gluten-free if it helps, but keep in my mind that testing will be harder after long periods of gluten-free. The longer you're gluten-free, the longer the challenge will have to be. 

[BlessedMommy]

If there's anyway that you could get $250 for testing, this site might be useful for you. Open Original Shared Link

 

Even if you can never afford to get an endoscopy, blood testing could be helpful.