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I Really Don't Know What To Do.
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Hey everyone,

4.5 weeks ago I decided to go gluten free to deal with a crazy amount of symptoms with no found medical cause (anxiety, depression, dizziness brain fog, weakness, fatigue, nausea etc). I went through crazy withdrawals, my sister did as well, but she started to feel better about 2 weeks in. I however never really felt better. I did end up with a kidney infection in there so that probably didn't help. After taking to my naturopath and dietitian they both said because I hadn't seen a major improvement in 4.5 weeks I should not worry about consuming gluten. They advised me to eat to stabilize my blood sugar and told me to go back to gluten. Yesterday I ate a chip, a cracker and a pretzel. I also started my new blood sugar diet. Last night I felt more anxious then usual and today I have felt depressed and out of it. I ate a bit of cake and a bite of gluten soup today and tonight my stomach feels a little off. It is very noisy and I am nauseous. I am still on meds for the kidney infection, but I don't think they made me feel like this before. I don't know if I should go back to gluten free or give it a few more days. I am worried because we are leaving for florida next weekend and really don't want to be feeling crappy. What should I do????

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It sounds like you have a pretty long list symptoms that could most certainly be

due to gluten intolerance/Celiac. One month really is not long enough of a test

to see whether or not being gluten free affects you, especially with something

as serious as a kidney infection happening concurrently. It is so easy to replace

gluteny things with gluten-free ones that I just don't see how being gluten free

could affect your blood sugar. Have you been entirely grain-free for this month,

or have you been using replacement products like pasta, bread, bagels?

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A three-month gluten free trial period is normally recommended because not everyone starts feeling better right away. Those with mostly GI symptoms often show improvement the fastest; the neurological symptoms seem to take a little longer on average and often don't show up on blood tests.

If you felt better off gluten than on it, I would stay off it. You don't want to be feeling crappy in Florida and if you go back on it now you may well end up feeling worse than you did before. Besides which, you would have to start your gluten free trial alll over again :( if you really wanted to find out if that was your problem. You were just getting started.... :)

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i did eat pastas, breads. I made muffins and scones, ate cereal and rice cakes. Almost everyone I spoke with said you should feel better in 2-3 weeks. This is so confusing.

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i did eat pastas, breads. I made muffins and scones, ate cereal and rice cakes. Almost everyone I spoke with said you should feel better in 2-3 weeks. This is so confusing.

It is confusing, you're right. Fortunately, here on the Celiac forum you've found a huge community of

people who can help you by sharing their personal experiences. A lot of times, that can be more

helpful than what one doctor with limited experience can do for you.

If you've been using the gluten-free replacement products, there is NO reason whatsoever that you

would somehow 'need' gluten-containing foods to add carbs or starches to your diet to control your

blood sugar. I would seriously question whatever doctor told you this. Hopefully someone else will

jump in if I'm off-base with that.

I would strongly urge you to return to the gluten free diet. It's clear from your post that you're feeling

worse since you added gluten back in, and that's pretty good evidence that you need to be gluten free.

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Thanks so much for the feedback and support. I was thinking at some point I would go back to gluten to get the official celiac test, but I don't think I want to. I cannot believe how crappy I feel. Last night I said ok I am going to eat a piece of toast and see how I feel tomorrow. Well I woke up this morning with diarrhea so back to gluten free I go. Just wish I knew if it was celiac or a sensitivity. Is there any testing that I can do without going back to eating gluten?

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I'm dx celiac, going on 7 months, still not really better. Getting there though. Your naturopath and dietitian, while trying to make things easier for you, obviously aren't aware of how long it can take some people to feel better while being gluten free.

Were you 100% gluten those 5 weeks? Didn't eay any traces of things, or used dishes that probably have gluten on them, or ate out or at someone else's house?

No, there's not really testing you can get without going back on gluten. It's not useful to define difference b/w gluten sensitivity and celiac disease, except for what other people will treat you as (which, albeit, can be a really big difference). I read evidence everday that gluten sensitivity sounds like pretty much the same autoimmune disorder, just doesn't affect the small intestine.

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    • 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.
    • I honestly feel like both doctors think it's all in my head even though there is proof.  Yeah there was a point when I felt crazy.  That was when I was being shuffled from dr to dr being given individual diagnoses of my problems.  None of those diagnoses ever made me get better.  Seriously I was diagnosed with heart palpitations, neurocardiogenic syncope, I was given a butt load of steroids because a dr felt like I was producing too much adrenaline, freaking had a few tell me I was depressed, and the good ol IBS.  It seemed most wanted to push pills.  It's all just ridiculous!
    • I can't believe your doctors!!! You have a daughter who is dx'd already! Yet the ped doesn't want to test your other kids unless you have a dx????!!! Are you kidding me???!!! That's absurd!!! They have a first degree relative who has been dx'd with celiac already. There is no need to wait to see what you turn out to be!! And then, and then, and then....don't even get me started on your doctor!!! Does he have brain damage? Oh this is insane & ridiculous!  I have never heard of a disease that doctors are so unwilling to consider or test for OR to diagnose as this one! Usually they are hot to trot to make a dx but say the word celiac & they shake in their boots. Grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr!!!!!!!!!!!!!!!!!!
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