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#1 Chase Corin

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Posted 05 February 2012 - 08:15 PM

My doctor is a bit of a "Bring me absolute proof and I might believe you" type. I have been asking him for years to do a series of broad ranged blood tests to find out what is wrong with me.

I was diagnosed with Crohn's back in 2001, Since then I have had 3 scopes that came back as being clean so I was re-diagnosed with IBS. Since December of 2010 I have been "Flairing" which basically means I have had diarhea for over a solid year. Since Christmas 2011 I have lost a clothing size and have been overly listless and lacked any energy.

I have recently cut out all gluten as recomended by a family friend, It's been only about a week but I am seeing results already. I am overwhelmed by the idea of living gluten free for the rest of my life. I am such a carb junkie and things like cousecouse are staples in my diet. I got some gluten free bread and tried to toast it in the toaster and nothing, it didn't even turn beige, it was the wierdest stuff I have ever eaten.

I had some regular campbell's mushroom soup for dinner tonight and it sent me running for the bathroom. I don't know if I can live in a world without mushroom soup.


How do I convince my doctor I need to be tested for this and what are some of the better gluten free products I should look for?
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#2 hexon

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Posted 05 February 2012 - 08:49 PM

My doctor is a bit of a "Bring me absolute proof and I might believe you" type. I have been asking him for years to do a series of broad ranged blood tests to find out what is wrong with me.

I was diagnosed with Crohn's back in 2001, Since then I have had 3 scopes that came back as being clean so I was re-diagnosed with IBS. Since December of 2010 I have been "Flairing" which basically means I have had diarhea for over a solid year. Since Christmas 2011 I have lost a clothing size and have been overly listless and lacked any energy.

I have recently cut out all gluten as recomended by a family friend, It's been only about a week but I am seeing results already. I am overwhelmed by the idea of living gluten free for the rest of my life. I am such a carb junkie and things like cousecouse are staples in my diet. I got some gluten free bread and tried to toast it in the toaster and nothing, it didn't even turn beige, it was the wierdest stuff I have ever eaten.

I had some regular campbell's mushroom soup for dinner tonight and it sent me running for the bathroom. I don't know if I can live in a world without mushroom soup.


How do I convince my doctor I need to be tested for this and what are some of the better gluten free products I should look for?


I actually like some of the gluten-free breads better than their gluten counterparts. Try glutino or Udi's bread. Keep them in the freezer and toast them to thaw them out. I'll go ahead and tell you now that you may just want to microwave it or toast it in a skillet since your toaster likely is going to cross contaminate any gluten-free stuff you put into it. Progresso has a cream of mushroom soup that doesn't have any gluten in the ingredients.
I can totally relate with the chronic D. I gave up gluten mid November of last year and finally saw some relief from the cramping and D (until recently, where I seem to react to anything). I'll go ahead and tell you though that once you cut out gluten it makes testing for celiac/gluten intolerance very difficult if you want a formal diagnosis. I got a negative celiac blood test anyways, which is pretty common, and I don't particularly care which term defines my issues. I just know it's worked pretty well so far.
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#3 mushroom

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Posted 05 February 2012 - 11:47 PM

Yes, as the pp says, if you want a celiac diagnosis you have to continue to eat gluten up until the time of testing. If you resume eating gluten now, one week would not make any difference; two weeks and the results would not be necessarily valid. So get back on the gluten and tell your doctor that you NEED to be tested for celiac now because you are going to quit eating gluten because you can't stand it any more. Tell him about yuur recent weight loss and your year of diarrhea. Have you ever had the celiac blood tests or just the endos? These are the blood tests you should have:

Anti-Gliadin (AGA) IgA
Anti-Gliadin (AGA) IgG
Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Deamidated Gliadin Peptide (DGP) IgA and IgG
Total Serum IgA

If the blood testing is postive they will probably want to do another endo, for which you should also continue eating gluten.

Incidentally, has anyone ever told you that a gluten free diet is helpful for Crohn's also?

By the way, welcome to the board. Ask any questions that come to mind. :)
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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 AVR1962

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Posted 06 February 2012 - 12:31 AM

My doctor is a bit of a "Bring me absolute proof and I might believe you" type. I have been asking him for years to do a series of broad ranged blood tests to find out what is wrong with me.

I was diagnosed with Crohn's back in 2001, Since then I have had 3 scopes that came back as being clean so I was re-diagnosed with IBS. Since December of 2010 I have been "Flairing" which basically means I have had diarhea for over a solid year. Since Christmas 2011 I have lost a clothing size and have been overly listless and lacked any energy.

I have recently cut out all gluten as recomended by a family friend, It's been only about a week but I am seeing results already. I am overwhelmed by the idea of living gluten free for the rest of my life. I am such a carb junkie and things like cousecouse are staples in my diet. I got some gluten free bread and tried to toast it in the toaster and nothing, it didn't even turn beige, it was the wierdest stuff I have ever eaten.

I had some regular campbell's mushroom soup for dinner tonight and it sent me running for the bathroom. I don't know if I can live in a world without mushroom soup.


How do I convince my doctor I need to be tested for this and what are some of the better gluten free products I should look for?

Is there anyway you could see a new doc? Having already been diagnosed with Crohn's it would lead me to think this very possibily could be celiac. Bad thing about testing is it is not accurate and a person who tests with negative lab results could retest a year later with positive results. If you want to persue an actual diagnosis you would have to continue to consume gluten. However, if the diagnosis is not as important you can always try a gluten-free diet and see if there you find any improvement in your health issues.

You would really be surprised how soon you give up the bread cravings once your body is detoxed from glutens. I was also a big carb eater, loved my cinnamon rolls and tortillas. Now, I don't even find gluten-free bread appealing and it is not because of the taste, it's just that I no longer have those cravings. There are so many foods to eat and so many that are much more beneficial for our bodies. Once you rule out gluten, it really is not all that hard to live without. I do know however, what you are saying, I felt the same. I could not imagibne a whole lifetime of eating no glutens but really it is not as hard as I thought it would be.
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Miscarriage, Kidney stones, Anemia, Pneumonia, Migraines, Restless leg, Bone fractures, Blurred/Double vision, Extreme fatigue, Bone & Joint Pain, Thyroid nodule, Celiac diagnosed 2011, Spine and leg bone loss, GERD, Vitamin deficiencies, Malabsorbtion, Neuropathy issues, Ataxia, Raynaud's Syndrome. Currently on diet with limited grain and sugar.

#5 ravenwoodglass

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Posted 06 February 2012 - 03:59 AM

You have gotten some great advice alreay. The only thing I want to add is that if your D is waking you up at night be sure to mention that to your doctor. IBS does not wake folks out of sleep according to my GI. If that is happening to you that rules out it being just IBS.
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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)

#6 Chase Corin

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Posted 06 February 2012 - 01:45 PM

You have gotten some great advice alreay. The only thing I want to add is that if your D is waking you up at night be sure to mention that to your doctor. IBS does not wake folks out of sleep according to my GI. If that is happening to you that rules out it being just IBS.


My D does wake me up in the middle of the night so I will definately mention that to my doctor.
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