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How Long To Persist With gluten-free Trial?


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#1 simon70

 
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Posted 12 September 2011 - 04:24 PM

I don't have a positive diagnosis, but many of the symptoms and risk factors for celiac disease (e.g. I'm hypothyroid), and I have been trialling a strict gluten-free diet for 3 months. The signs are mixed: I haven't experienced any improvement in energy levels (I have chronic fatigue) or in my excessive mucus production and sinus problems (which have been plaguing me for 10 years). But my stools look much healthier (before they were always extremely loose and difficult to flush, now they look normal and don't stain the toilet bowl!). And I don't think I've had a single migraine since I changed my diet, which is almost a record. So do I persist, and if I do, can I hope to feel some improvement in the other areas?
Also, could I perform a little experiment? If I really am gluten intolerant, then I ought to be especially sensitive to it now that I've been gluten-free for a while, right? So what if I deliberately 'gluten' myself one day soon - what are the symptoms I should look out for that would confirm that I'm on the right track? Or would you leave it much longer than 3 months before trying this?
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#2 Marilyn R

 
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Posted 12 September 2011 - 05:19 PM

I share in your happiness that you aren't having migranes anymore and that your digestive problems seem to be resolving.

For me, it took a solid 18 months to really feel better. Other people feel better much sooner.

I know a dietician who cheats on the diet. (She says she knows she'll end up with a colostomy anyway.) My mother was a registered nurse and she cheated on the diet for years. (And didn't have a colostomy when she died at 87 years, but had a really, really rough time from age 55-87.) I won't cheat. It makes me feel too sick for too long just when I make a mistake or get cc. I've never had a migraine headache. If you don't get those anymore, I recommend the Benjamen Franklin approach. Make 2 columns on a piece of paper. List one "positive" and the other "negative". That's worked for me in the past. (And how I decided to divorce a mistake! :D )
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Positive improvement from elimination diet. Mother dx'd by Mayo Clinic in late 1980s. Negative blood tests and Upper & Lower GI biopsy. Parathyroidectomy 12/09. Recurring high calcium level 4/10. Gluten-free 4/10. Soy & Dairy Free 6/10. Corn free 7/10. Grain free except rice 8/10. Legume free 6/11. Fighting the battle of the battle within myself, and I'm going to win!

As of 2/12, tolerating dairy, corn, legumes and some soy, but I limit soy to tamari sauce or modest soy additives. Won't ever try quinoa again!

Discoid Lupus from skin biopsy 2011, discovered 2/12 when picking up medical records. Systemic Lupus Dx 6/12. Shingles 10/12.

#3 glutentheintolerant

 
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Posted 13 September 2011 - 03:01 AM

I'm 8 months into my gluten-free diet now and if I ingest Gluten I'll end up becoming depressed and tired. Sometimes hard to figure out because I gradually fall into it. My stomach will start protesting as well. I think that if you were to ask 7 people here on a forum what they'd have to look out for, you'd get 7 different answers. I think you'd have to start your own (mental) list on your symptoms. All the symptoms you had before but now no longer have are a good place to start.

If you have only recently started eating gluten-free, your stomach might still be recovering and intake of nutrients could still be poorer than is normal. Perhaps the tiredness is due to a vitamin deficiency? I'd give it more time.
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#4 simon70

 
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Posted 14 September 2011 - 02:56 PM

Thanks for your replies. Sounds like I have to keep patient and persevere.
Actually, part of the reason I asked that question was that I'm going on holiday in a fortnight, when the risk that I'll accidentally consume gluten obviously goes up, and I was worried that it might make me quite ill if my sensitivity had increased. That's why I wondered whether I ought to test my body out first under more controlled conditions (i.e. at home, where I can take to my bed if need be!). But from what you say, it sounds very unlikely I'd suffer any more than previously.

If I were to to make two lists, then the only negative against the two positives I mentioned is a slight loss of weight since I went gluten-free (I'm underweight, so that's a negative for me). But as far as I know it's not uncommon to change weight in either direction in the short-term, is it?
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#5 Twinklestars

 
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Posted 15 September 2011 - 03:11 AM

Hello! I'm glad you're seeing improvements on a gluten-free diet, that's a very good thing :) I just thought I'd add in that I've heard a reaction from being glutened once you're on a gluten free diet can be more severe than what you may have been experiencing beforehand.
So a decision to 'test' whether you have an intolerance via your diet is yours. But maybe hang close to home, in case it's not what you expect. It may be the way I end up being diagnosed as well. I think at the end of the day most of us need a little 'proof'. And why not, when for most of our lives we've been told there's nothing wrong and it's in our head.
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#6 glutentheintolerant

 
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Posted 15 September 2011 - 04:25 AM

I think the reason the symptoms might feel more severe is because you know the difference between feeling good and bad whereas before you've always felt bad. At least that's what applies to me.

Why do you think you'll be glutened while on vacation? You should do some research into gluten-free brands. And don't forget to mention that you need to steer clear of Gluten whenever applicable.
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#7 RollingAlong

 
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Posted 15 September 2011 - 05:05 AM

It is easy to make a mistake when you are first on the gluten-free diet; be very careful on your vacation! That's just not a good time to be uncomfortable.

Have you considered a trial of eliminating dairy, or at least casein? That can be a factor for the sinus issues you mention.
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#8 sreese68

 
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Posted 15 September 2011 - 07:28 AM

I did a gluten challenge after being gluten-free for 8 weeks. I had an obvious reaction to it. However, I was surprised that it was ALL neurological at first. Took 4 days for any GI involvement (I get C instead of D). Also took almost a week to feel better afterwards. I'd recommend trying gluten this weekend to see what happens. Then you'll have a better idea of how careful to be during your vacation.
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Sharon
gluten-free March 2011
Failed gluten challenge May 2011
Diagnosed celiac 5/25/11

#9 simon70

 
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Posted 18 September 2011 - 08:31 AM

Thanks for all the tips. I took your advice and yesterday did a gluten challenge, and I'm glad I did it, because about 3 hours after eating half a bagel I had quite bad stomach ache. I had to lie down for an hour, and the pain went away completely after about 3 hours. Other symptoms I noted were increased mucus in my throat and nose. I take it as a positive sign, really, that I am on the right track with this diet, despite not having a positive diagnosis for celiac disease. I don't think I need one anymore, not to convince myself anyway. So I'm going to have to be extra vigilant when I go on holiday next week!
Anything else you would read into my experience, based on your own?

RollingAlong - I've eaten little or no dairy for about 10 years, so unfortunately that's not the answer to my sinus problems, but thanks anyway.
glutentheintolerant - I hope you're right that my nutrient intake will improve once my stomach gets used to the change of diet. I have tested deficient in D and B12 in the past, and I take supplements of both.
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#10 Twinklestars

 
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Posted 18 September 2011 - 02:06 PM

At least you know you're on the right track :) Are you having much gluten free processed food? If you are, it's possible your body doesn't really like it and it could be why you don't feel great after 3 months gluten free. Or it may just take time.
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