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I Really Don't Know What To Do.


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6 replies to this topic

#1 JAS2

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Posted 10 February 2013 - 03:28 PM

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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#2 JNBunnie1

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Posted 10 February 2013 - 03:43 PM

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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If you're going through hell, keep going. ~Winston Churchill

#3 mushroom

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Posted 10 February 2013 - 04:03 PM

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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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

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Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

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#4 JAS2

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Posted 10 February 2013 - 04:05 PM

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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#5 JNBunnie1

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Posted 10 February 2013 - 04:17 PM

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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If you're going through hell, keep going. ~Winston Churchill

#6 JAS2

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Posted 11 February 2013 - 05:15 AM

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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#7 cavernio

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Posted 11 February 2013 - 11:13 AM

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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diagnosed Jan 2012, bloodwork only
June 2012 positive visual of celiac disease from gastroscopy


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