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I Think I Did A Foolish Thing, And Now I'm Having Trouble


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#1 jcp

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Posted 29 November 2012 - 05:28 PM

Hi, everyone. I'm Julie and I'm hoping I can get some guidance.

I have had extremely bad IBS for about 7 years. I went from having some problems eating onions to having huge problems with essentially everything that wasn't meat, dairy, or simple carbohydrates.

I kept cutting things out of my diet, more and more all the time, and kept having trouble, but it would be better sometimes and worse sometimes.

Last year, I started going to a new doctor who asked if I'd ever been tested for celiac. I said no, I had a blood test, and it came back negative. Of course, I told her, it was going to be negative because I can eat those simple carbohydrates. It's veggies and fruits and fiber and all of that stuff that causes the trouble.

This year, it was worse than ever. She said, "Are you SURE you don't have celiac?" and I reminded her I'd been tested. She did other blood tests and I have a Vitamin D deficiency. She suggested I see a specialist, but honestly I just felt like I didn't have time. (I'm in law school.)

Still thinking she was crazy, I decided to show her! I'd try a gluten-free diet for a while and see, thinking that even if it helped, I would still be able to go back on gluten and then go forward with testing.

So, I went off gluten for about three months. The change was remarkable. Huge. The worst of the IBS symptoms basically went away in a few weeks. The rest faded over the months.

Still, I knew I had to go back on gluten at some point just to get definitive tests done. Blood work again, maybe a biopsy, seeing a specialist, etc.

So, I decided I'd try eating gluten again. I started on Thanksgiving. I had two meals on Thanksgiving that involved bread. By the end of the day, I just had a rather odd full feeling, like I'd been gorging all day, though I hadn't. Friday, more gluten. Really uncomfortable now, feeling like my stomach was stuffed full. Saturday, more gluten. Extreme pain by the end of the day. Couldn't take any more, stopped eating gluten, and am now back to feeling mostly normal on my fifth day back gluten free, though boy howdy were the days in between really incredibly rocky, with major digestive issues.

So, my questions:

1. If this is a gluten issue, why would I be suffering so much when before going gluten-free the symptoms were not so dramatic? Does this suggest it's more in my mind?

2. If this is a gluten issue, does this mean the weeks or months I'd have to stay on gluten to complete my testing would be THAT miserable?

I feel like an idiot for trying to go gluten-free without having a diagnosis, though I really thought it was not going to work. Now I feel a little trapped. Any help, advice, stories, or smacks upside the head would be welcome. Well, maybe not the smacks, but I probably deserve them!
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#2 Ollie's Mom

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Posted 29 November 2012 - 06:40 PM

Hi there,

I hear ya. I used to think salad didn't agree with me because it would come out within 2 hours of eating it. I also thought I had a problem with alcohol. But nope, it was gluten the whole time.

If your "IBS" symptoms resolved while gluten-free, I don't think this is all in your head. Deep down you probably feel the same way.

As for continuing to consume gluten for testing purposes.... unfortunately, yes, if gluten is your issue then it won't get any better while you do the challenge. Keep in mind that the testing is looking for antibodies or blunted villi... basically this means you have to damage your body to the point doctors can see the damage in order to get a diagnosis.

I guess the real question is : do you think you need an official diagnosis?

You are an adult, so you can control your own diet. You will find there are many of us here who don't have an official diagnosis (me included). We know gluten is bad for us and don't need a diagnosis to make us stick with the diet.

Ask yourself if you really need that diagnosis.

Hth. And welcome!
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#3 Takala

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Posted 29 November 2012 - 06:41 PM

For reasons unknown, those with real gluten problems, who quit ingesting gluten for a period of time, then resume, frequently feel the bad effects much worse than before they quit. This is called a "gluten challenge." It is also done with other foods, you stop eating it, then reintroduce it and see what happens. A normal person, say, someone like my spouse who eats gluten free at home for long periods of time, but sometimes eats gluten out at business travel, feels no ill effect whatsoever from switching back and forth. I would get very sick if I tried that. I used to be able to tolerate some minor gluten cross contamination, (although I tried to avoid it) but now, having been years off of it, I can't. I've been hammered by certain food products that others can eat, and I have to avoid them, and be careful. So, you see, this is not in your head, this is a very real phenomena and it is another way to confirm that you do have a problem with gluten.

Secondly, sometimes the testing is less than perfect. Even if we lived in a world where the testing was completely accurate, there is still a category of gluten intolerance called non- celiac gluten intolerance, or NCGI. These people really do have a physical reaction to eating gluten, but they won't be "officially" diagnosed as celiac. I don't have an "official" diagnosis, but it does not matter to me because I am rock-solid on my need to be gluten free, and I have had several battles with physicians trying to insist that I couldn't possibly be celiac, based on stereotypes, because at that time there was not the more widespread awareness we have today of the more unusual neurological symptoms.

I don't know what would happen if you went back on gluten full time, but.... sometimes people do give up and just go gluten free, so they can avoid the side effects. Your physician may give you her blessings to be called a "gluten intolerant" based on your "gluten challenge," especially if you then can bring up your vitamin D levels. (has anyone looked at your bone density, I had that at an early age, another hint that they missed.)

If you are not doing so already, it is a good idea to take a gluten free multivitamin supplement, being sure to get a B complex in there, and a gluten-free calcium, magnesium, and D supplement, as we need more of these than regular people.
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#4 1desperateladysaved

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Posted 29 November 2012 - 07:50 PM

My MD made a diagnosis based on a genetic test, which you can do without eating gluten, and my observations when going gluten free. We have since verified some damage by a nutrient absorption test and food intolerance tests.

Diana
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#5 jcp

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Posted 29 November 2012 - 08:13 PM

Thank you all for your good information and advice.

Do I need the diagnosis? I honestly might. I have a desire to have it be scienfically verified, you know? I think because my diagnosis was IBS for so many years. But boy oh boy was I in pain. So I need to figure out what I can live with.'

I was hoping someone would say that once I got over the first few days or week, I'd settle back into my previous level of discomfort. I know, pipe dreams. :D
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#6 shadowicewolf

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Posted 29 November 2012 - 08:58 PM

My IBS vanished when i went gluten free and took the vomiting with it (it was really bad, every day).

I too had it for years (it progressively got worse from one to two times a month to the daily stuff), about... 9 years? I think? I remember when it first started. It got to the point where when i'd go out i'd have to map the places out and take peptobismol beforehand.

Oddly enough, for the times i was exposed to gluten after i went free, i went to the opposite extreme :blink: so weird.
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#7 tarnalberry

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Posted 29 November 2012 - 09:46 PM

I would like to point out that you have TWO very positive tests right here. You feel better without gluten. You feel worse with it.
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Tiffany aka "Have I Mentioned Chocolate Lately?"
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me
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#8 Ollie's Mom

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Posted 30 November 2012 - 01:22 AM

Do I need the diagnosis? I honestly might. I have a desire to have it be scienfically verified, you know? I think because my diagnosis was IBS for so many years. But boy oh boy was I in pain. So I need to figure out what I can live with.


IBS isn't really a diagnosis of anything. It's like telling someone they have migraines or fibromyalgia. All it is is a label for a set of symptoms. There's never a cause identified with it, nor effective preventative treatments provided.

I have no official diagnosis, but I can't tell you how liberating it is to not have to know where every publically accessible washroom is at my destination, and the routes there and back, when I need to go somewhere. Also, not having the frequent .migraines, accompanied by vomiting so violent that I could do nothing more than lie on the bathroom floor for entire days, is also a freeing feeling.

You did conduct a scientific experiment (elimination diet). With reintroduction of gluten, you returned to feeling ill. That is a legitimate test.

If you decide to tough out the gluten challenge in order to have testing done, what will you do if the tests come back negative? False negatives are a real possibility. Or you may be non celiac gluten intolerant (NCGI), which means you test negative on blood and biopsy, but respond to the diet. Just because you may not get that label of "celiac", does that mean you'll continue eating gluten and making yourself ill?
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#9 ravenwoodglass

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Posted 30 November 2012 - 06:17 AM

I have to agree that you were positive on the best, most reliable test we have. It is too bad your doctor didn't rerun your testing while you were still eating gluten. Especialy if you were tested a few years ago. Science has fairly recently developed some much better tests. You could also have been a low positive back then as some doctors will call a low positive negative.
Talk to your doctor. It sounds like the doc was pretty certain your symptoms were celiac. You may get your official diagnois based on your low vitamin levels, resolution of symptoms gluten free and your reaction to the gluten challenge.
You could also get gene tested. Be aware that even though the two genes most commonly associated with celiac are the ones most often found, there are others. The gene test can be helpful but it can not rule celiac out firmly just because DQ8 or DQ2 are not found
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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)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
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 with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity 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)

#10 jcp

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Posted 30 November 2012 - 08:42 AM

Thanks for putting this in perspective for me. I was reading something a few weeks ago where a GI doctor really didn't want patients to go on a gluten free diet without being diagnosed with a problem because gluten free diets are deficient. Is this anything to be concerned about, if I add in a multi-vitamin, etc.?
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#11 Ollie's Mom

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Posted 30 November 2012 - 04:27 PM

Thanks for putting this in perspective for me. I was reading something a few weeks ago where a GI doctor really didn't want patients to go on a gluten free diet without being diagnosed with a problem because gluten free diets are deficient. Is this anything to be concerned about, if I add in a multi-vitamin, etc.?


Deficient? In what possible way?

A proper gluten free diet, based on whole foods, not processed gluten-free crap, is probably one of the healthiest diets one can follow. Wheat products in and of themselves are naturally nutrient deficient, which is why they tend to be enriched/fortified.

There's no harm in adding a multi vitamin, per se, but it is no more necessary on a gluten-free diet that on a typical western diet (or, IMO less necessary on a gluten-free diet).

Did you read this on the web? If so, do you have the link?

The real trouble with trying a gluten-free diet prior to diagnosis, as you've discovered, is that testing requires eating gluten, which many people who have a gluten issue cannot handle as it makes them so ill.
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#12 jcp

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Posted 30 November 2012 - 05:28 PM

I'm not sure what deficiencies. I read it here:

As Lara Field, pediatric dietitian specializing in celiac disease at the University of Chicago (http://www.feedkids.com) points out, going gluten-free can also lead to certain nutritional deficiencies, so you should be certain of the diagnosis before committing you — and perhaps your entire family — to this diet.


I went to that website, but didn't see any deficiencies listed there.
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#13 GottaSki

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Posted 30 November 2012 - 05:40 PM

When I was diagnosed I went to a nutritionist that explained how I would no longer be eating processed foods fortified with vitamins and minerals -- I ate very few of these for the 43 years before diagnosis - so it was a non-issue for me. Whole foods and supplementing any deficiencies caused by Celiac Disease will fulfill all dietary requirements far better than the SAD (standard american diet).
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#14 tarnalberry

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Posted 30 November 2012 - 07:24 PM

The biggest part of the concern is when people stop eating fortified bread (which is a large source of folic acid for many people in the US). Of course, if you have a well balanced diet with plenty of fruits and vegetables, that's not a problem.
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Tiffany aka "Have I Mentioned Chocolate Lately?"
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me
Bellevue, WA

#15 Em314

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Posted 01 December 2012 - 09:35 AM

The biggest part of the concern is when people stop eating fortified bread (which is a large source of folic acid for many people in the US). Of course, if you have a well balanced diet with plenty of fruits and vegetables, that's not a problem.

Tangent, but would you happen to have a source for this, or a resource you could link me to with more info on what other nutrients most often get lost when one stops eating processed/fortified bread products? They have been a big part of my diet so that's probably something I ought to think about; I've been primarily focusing on protien and iron (fiber would be an issue but I eat plenty of whole fruits and veggies). (God only knows how much of it's actually been getting into my system correctly anyway if this really is celiac, though.)
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Diagnosed celiac December 2012 (bloodwork + endoscopy). Gluten-free since.


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