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Tranquillity

When Do I Give Up The Trial Diet?

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Are you postive you have taken all gluten out of your diet? It will only take one small source of gluten to keep the monster fed and you will not see a change! It could be in a vitamin, in a med you are taking, a cereal you may not have given up.............or it could be another intoleranre too.

Only you can judge.


Deb

Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

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Hi Deb, thanks for the reply :)

I obviously can't say I'm 100% sure, but it's close. No cereal or anything "big" contains gluten, of that I'm very sure. I skipped dinner and made my own about two weeks ago, since the soy used (perhaps 1/2 tsp) wasn't wheat free. BTW, I've avoided soy too, but I haven't tried as hard in that department.

I've checked all foods, toothpaste, vitamins and other meds for gluten and they are all supposed to be gluten free. I checked soap and shampoos in the beginning, but I'll admit I haven't the last two weeks or so.

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Hi Deb, thanks for the reply :)

I obviously can't say I'm 100% sure, but it's close. No cereal or anything "big" contains gluten, of that I'm very sure. I skipped dinner and made my own about two weeks ago, since the soy used (perhaps 1/2 tsp) wasn't wheat free. BTW, I've avoided soy too, but I haven't tried as hard in that department.

I've checked all foods, toothpaste, vitamins and other meds for gluten and they are all supposed to be gluten free. I checked soap and shampoos in the beginning, but I'll admit I haven't the last two weeks or so.

All it takes is a tiny crumb to make you sick. That 1/2 tsp of soy sauce with wheat in it would have sent me in an absolute tailspin. That's a HUGE amount of gluten. At least to my body it is. Are you eating anything made by Quaker (the oats people)? All of their stuff is said to be contaminated with gluten. Any prepackaged stuff has a chance of being contaminated. Perhaps go to a diet of fresh meat and fresh veggies and fruits and see if you notice any changes. Also, have you eliminated dairy? That can keep you feeling sick in the first few months on a gluten free diet as the lactose receptors are on the tips of the damaged villi. I hope you figure things out. Its no fun being sick for so long.


~Angie~

Gluten free since May 2004

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I'd recommend a gluten challenge too. Make it something you really want and pig out on it. Just one food group though. No need eating a "blooming onion" to see if you react. <_<

I did this 2 or 3 times to convince myself. I'm a little thick though ... And in my defense, I was being exposed to that hot bread from Carrabba's 3 or 4 times a week.

Have you been tested by your doctor or Enterolab ?


Jan 1990 - Dx CFS/ME/FM (URI's, Ataxia, myoclonus, orthostatic hypotension, insomnia, brain fog, swollen lymph nodes, sore throat... ) Completely Disabled (housebound and bedridden at times)

2004 - Digestive pain all the time.

May 2004 - Hiatal hernia, erosive gastritis, gastroparesis (endoscopy)

August 2004 - Colon polyps, diverticulitus, internal hemorrhoids (colonoscopy)

No relief from Nexium, Prilosec, Protonix, Zelnorm, Miralax, Imodium, Lomotil ...

July 2005 - GP recommended WFDFSFEFCF + vegan (Also, anything that hurts free)

Immediately stopped needing naps and digestive pain reduced.

Sept 2005 - GFDFCFSFEF + chemical free - Immediately stopped feeling jittery / buzzing and digestive issues were much better.

June 2006 - Dx B12 and iron deficient. Started B12 injections and using cast iron pan.

August 2006 - MYOCLONUS GONE. (off Klonopin)

September 2006 - ATAXIA, INSOMNIA and Feeling like the floor was moving under my feet gone.

June 19, 2007 - Positive DQ2, Dx Celiac

October 2007 - Sleeping like a baby, waking up with energy, but still having fatigue/stamina issues

Nov 2007 - Started Paleo diet for chronic hypoglycemia

April 2008 - GTT normal. I'm no longer hypoglycemic. Started Low oxalate diet for kidney stones.

May 1, 2008 - Began salt loading for OI/NMH - noticed immediately muscle weakness was gone. I was sodium deficient but my labs don't reflect it. Still working on OI and PEM.

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I think it might be time to try something with gluten and see if you react in any way?

Pauliina

Yes, that's the idea. I'm not completely sure about it, but to be honest I doubt anything bad will happen.

All it takes is a tiny crumb to make you sick. That 1/2 tsp of soy sauce with wheat in it would have sent me in an absolute tailspin. That's a HUGE amount of gluten. At least to my body it is. Are you eating anything made by Quaker (the oats people)? All of their stuff is said to be contaminated with gluten. Any prepackaged stuff has a chance of being contaminated. Perhaps go to a diet of fresh meat and fresh veggies and fruits and see if you notice any changes. Also, have you eliminated dairy? That can keep you feeling sick in the first few months on a gluten free diet as the lactose receptors are on the tips of the damaged villi. I hope you figure things out. Its no fun being sick for so long.

Yes, I do realize that even the tiniest bit is bad. As you know, it's pretty darn hard to completely avoid it, but I can honestly say that I've tried my best (and not failed that I know of).

Nothing from quaker, no. Dairy is still in, but I doubt lactose causes any problems (my symptoms aren't very much about the stomach). Casein might be an issue, though.

I'd recommend a gluten challenge too. Make it something you really want and pig out on it. Just one food group though. No need eating a "blooming onion" to see if you react. <_<

I did this 2 or 3 times to convince myself. I'm a little thick though ... And in my defense, I was being exposed to that hot bread from Carrabba's 3 or 4 times a week.

Have you been tested by your doctor or Enterolab ?

No testing whatsoever, I've barely brought it up with a doctor. I do know about having an official diagnosis and all that jazz, but decided to do a trial anyway (it can't hurt!).

If I do decide to try something out, how much should it be? Just a few breadcrumbs, or a bun, or three? ;)

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If you decide to try a gluten challenge I would stick with something simple like bread. Eat as much of it as you can and see if you get a reaction. Stay away from anything breaded or super greasy while you're doing this (and anything else that irritates your gut) so that you don't get a false reaction. Please keep in mind though that there are many silent Celiacs. I get a horrible reaction from tiny amounts of gluten, but if I go on a gluten binge I get no reaction. Weird, huh? You may want to try with a little bit of gluten and then a week or two later eat a lot of gluten if you didn't have a reaction to the small amount.


~Angie~

Gluten free since May 2004

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Well, :P , I ate a half of a loaf of Carrabba's bread. And yes I was very very sick ... Mine wasn't exactly a planned challenge, more of weak moment. :lol:

The next time I was smarter and just ate a small amout of plain wheat macaroni. Sick again.

IMHO, I'd say, eat whatever you want within reason. A slice of cake, a donut, twinkie, piece of non greasy lasagna ... It could be the last time you'll ever willingly eat gluten.


Jan 1990 - Dx CFS/ME/FM (URI's, Ataxia, myoclonus, orthostatic hypotension, insomnia, brain fog, swollen lymph nodes, sore throat... ) Completely Disabled (housebound and bedridden at times)

2004 - Digestive pain all the time.

May 2004 - Hiatal hernia, erosive gastritis, gastroparesis (endoscopy)

August 2004 - Colon polyps, diverticulitus, internal hemorrhoids (colonoscopy)

No relief from Nexium, Prilosec, Protonix, Zelnorm, Miralax, Imodium, Lomotil ...

July 2005 - GP recommended WFDFSFEFCF + vegan (Also, anything that hurts free)

Immediately stopped needing naps and digestive pain reduced.

Sept 2005 - GFDFCFSFEF + chemical free - Immediately stopped feeling jittery / buzzing and digestive issues were much better.

June 2006 - Dx B12 and iron deficient. Started B12 injections and using cast iron pan.

August 2006 - MYOCLONUS GONE. (off Klonopin)

September 2006 - ATAXIA, INSOMNIA and Feeling like the floor was moving under my feet gone.

June 19, 2007 - Positive DQ2, Dx Celiac

October 2007 - Sleeping like a baby, waking up with energy, but still having fatigue/stamina issues

Nov 2007 - Started Paleo diet for chronic hypoglycemia

April 2008 - GTT normal. I'm no longer hypoglycemic. Started Low oxalate diet for kidney stones.

May 1, 2008 - Began salt loading for OI/NMH - noticed immediately muscle weakness was gone. I was sodium deficient but my labs don't reflect it. Still working on OI and PEM.

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If you have seen no differnce at all in addition to doing a challenge I would also eliminate dairy. Be aware that a challenge with gluten may not show a reaction for 3 or 4 days after you add it back in. If you are still heavily symptomatic you may want to consider eating just plain rice, fresh nothing added chicken, applesauce and perhaps peas or another green veggie that is easy on the tummy. No Dairy, no soy, no gluten, no coffee, alcohol or sodas. After a few days you should be feeling better. Then do the challenge. It can at times be confusing to do a challenge if we are still actively sick. So many of us have problems with dairy that you really should consider eliminating that along with the gluten as a first step.

Also a bit of soy sauce a couple weeks ago could very well have been enough gluten to make you sick for quite a bit of time. You really need to be strict hard as that may be at first.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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Are you in England?

My understanding is that it England, Corn Flakes and Rice Krispies are labeled as gluten-free--ABD THEY'RE NOT--they contain barley malt.

Also, anything with wheat starch does contain gluten. Yes, I know in the UK it's still considered gluten-free, but apparently, most celiacs do react to it, so it likely does contain gluten.

There are a lot of other sources for potentially "hidden" gluten--like tuna salad (contains breadcrumbs), "lite" ice creams (contains wheat starch), sauces, and salad dressings (contain flour).

The above-mentioned dairy is also a strong possibility--Many of us here had to limit dairy for at least a few months until our intestines healed. This is because the villi--which are what celiac damages--are responsible for making lactase, which is what digests the lactose in milk. As the villi heal, the ability to make lactase usually returns, but until then, dairy products can apparently prevent the villi from healing, even though you are off gluten.

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Fiddle Faddle they are in Sweden but you still have an excellent point as the same issues exist there.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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I've been gluten free (as far as I know, completely) since 2007-10-29. Not the slightest positive difference since then. Not any.

Time to give up? <_<

Oh no don't give up......

Hubby was still being glutened from a pain killer they had him on, but now since he is 100% gluten free he's so much better and it could take u up o 6 months to get feeling better like he did :(

I also was having problems with red potatoes <_<

I had to make a food diary before I found out all what was geting me so maybe u will have to keep one as well.

I hope you get your answer soon cuz it's no fun at all being sick as this can make you.

Hang in there!

Good Luck

Bea

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Fiddle Faddle they are in Sweden but you still have an excellent point as the same issues exist there.

Oh, NOW I see where it says "Sweden!" Oops. Sorry, Tranquility! But if it's the same in Sweden, then a lot of things that are labeled gluten-free aren't gluten-free. :(

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Oops, I'm lagging behind with all these answers. :D

I do know about the "gluten free" stuff; most if not all of the things I eat are naturally gluten free, though. In other words, nothing gluten-containing is allowed anywhere near it, as opposed to plain "gluten free" wheat starch, etc.

I realize that a month might not be enough, but many of my symptoms aren't really celiac anyway. Some are. On the other hand, the few stomach symptoms I did have seem to be "better" now. Rather, my (slight) D is turning into C... I kind of blame my declining thyroid values for that, but needless to say gluten could well have something to do with it!

Ugh, this is hard. My parents are convinced (99%) that gluten has nothing to do with my problems (see my first post for "a few" :o symptoms and such). I'm not that sure, but there is really no real reason to blame gluten any more than, say... Well anything, really.

I guess I'll wait for the thyroid tests; if they are bad, that seems like a much more likely cause of most of my symptoms. I don't think anyone in my near family has had any kind of allergy/intolerance, nor autoimmune disease that I know of, so I'm not really high-risk for celiac either. :huh:

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Ugh, I still can't figure this out! I started eating gluten again a couple of days ago, but can't make up my mind if I'm worse off or not!

My stomach has become worse, more D (was closer to the opposite, if anything, when off gluten). On the other hand, while I do feel bad, I felt bad the months off gluten as well. Plus, I've both started and stopped a med recently which may contribute.

Any advice?

I'm considering enterolab again, but the shipping costs aren't pretty from here! :(

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Well D is a classic symptom of celiac so I wouldn't completely ignore it, at least acknowledge that something did change.

Did you ever have any kind of testing for celiac, I forget? One option would be to stay on gluten for the next few months and try to get tested.

I think it would be a good idea to keep a food and symptom diary for a while, too, including what meds you are taking, so you don't overlook anything.

Pauliina

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Well D is a classic symptom of celiac so I wouldn't completely ignore it, at least acknowledge that something did change.

Did you ever have any kind of testing for celiac, I forget? One option would be to stay on gluten for the next few months and try to get tested.

I think it would be a good idea to keep a food and symptom diary for a while, too, including what meds you are taking, so you don't overlook anything.

Pauliina

Nope, no testing. Well actually, I had a minor blood test (not the full panel) recently, but I had been off gluten for 2 months when the blood was drawn, doh! Didn't even know my doc was going to test for it (I just briefly mentioned celiac, but I didn't mention that I was not eating gluten...). The test was negative but that's far from proof as you all know.

I'll go back on the gluten-free diet for now, and see if things get any better or not (in the short run, i.e. a week or two). If they do, I'll either go with enterolab or another challenge, I think. Not the greatest plan, though, since I will once again make my body unhappy if gluten is a problem for me. In any case, I'll stay on the diet for a short while and see if the stomach issues settle or not, and perhaps try again later when gluten is the only thing that changes. :)

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I think if you find that the D will stop when you go gluten free that you can then say at least that gluten bothers your intestines. Then it might be a case of looking for other causes for the other symptoms, it's of course possible that gluten free isn't the final answer to everything. :)

Pauliina

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Yep, if it goes now and comes back on gluten later, I'll be pretty sure I suppose! Still, I'll probably go with enterolab to try for casein, egg, soy and yeast too. I should've had more improvement gluten free than I did, if gluten was my only problem. :)

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