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Hi

I'm trying to decided if I should mention Celiac Disease/Gluten Intolerance to my doctor? I've had a bunch of tests over the years - we thought it was Gallbladder, I've been diagnosed with IBS - but nothing seems to be the right answers. My doctor recently put me on a diet to loose my unexplained weight gain and I've noticed since then I've had less symptoms.

Background - I've had pain on my upper right side near the gallbladder, bloating, gasiness, pale/foul BM's and lot's of heartburn/acid reflux. My doctor has me eating a granola bar for breakfast with coffee, salad and a yogurt for lunch and a dinner that does not inlcude pasta - I've switched to rice. I also have a 100 calorie snack pack at night. Since I started eating this way I've been doing great.

This week I had popcorn and Pasta on 3 different occasions and the pain is back. I started to wonder if it was the pasta and when I started searching I came up with Celiac Disease. Do you think I should mention this to my Doctor and ask him to test for it?

Thanks in advance!

Kristen


Kristen

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Hi Kristen and welcome to these boards. IBS is not a valid diagnosis, as something is causing your bowels to be irritated! IBS is a symptom, and any doctor who 'diagnoses' patients with it is either too ignorant or too lazy (or both) to investigate further to find out the cause.

Many people here were misdiagnosed with IBS before finally getting the proper celiac disease diagnosis.

All your symptoms could be caused by celiac disease, and you are right in wanting to ask for testing. The only problem is, that now you have been eating very little gluten for a while, which could potentially cause false negatives on the celiac disease testing.

You really have your proof that you are at least gluten intolerant after your bad reaction to gluten foods.

Unless you are one of those people who need absolute proof, you might just want to eliminate all gluten from your diet and be on your merry (and healthier) way.

There is one way to still do testing while gluten-free, and that is through Enterolab. Their testing is still accurate up to a year after starting the gluten-free diet. Mind you, they can't officially diagnose celiac disease, but can tell you if you are gluten intolerant. Unfortunately, the biopsy (which isn't that accurate a diagnostic tool) is still considered a must for diagnosis.


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

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Kristen,

Don't ask your doctor, just insist on getting the blood test. In my experience, Doctors beat around the bush. It's a simple blood test and it will tell all...

Good luck!!

Alex

Hi

I'm trying to decided if I should mention Celiac Disease/Gluten Intolerance to my doctor? I've had a bunch of tests over the years - we thought it was Gallbladder, I've been diagnosed with IBS - but nothing seems to be the right answers. My doctor recently put me on a diet to loose my unexplained weight gain and I've noticed since then I've had less symptoms.

Background - I've had pain on my upper right side near the gallbladder, bloating, gasiness, pale/foul BM's and lot's of heartburn/acid reflux. My doctor has me eating a granola bar for breakfast with coffee, salad and a yogurt for lunch and a dinner that does not inlcude pasta - I've switched to rice. I also have a 100 calorie snack pack at night. Since I started eating this way I've been doing great.

This week I had popcorn and Pasta on 3 different occasions and the pain is back. I started to wonder if it was the pasta and when I started searching I came up with Celiac Disease. Do you think I should mention this to my Doctor and ask him to test for it?

Thanks in advance!

Kristen

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Unfortunately, that blood test may not tell all. Those blood tests are highly unreliable and will likely give a false negative reading if somebody hasn't been eating lots of gluten for a long period of time.

If the blood test is positive, you can be pretty sure it is celiac disease, as false positives are pretty much unheard of. But if you get a negative result it won't rule out celiac disease.


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

------------------------------------------------------------------------------------------------------------------

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Guest tamedandfoxed

A note: if you aren't reacting to the granola bar (oats) then it may NOT be gluten, but could be WHEAT. If it were me, I would try eliminating wheat before i tried the full-blown gluten-free diet. See how you feel. If you feel better but not 100% then maybe consider eliminating gluten as well. All depends on how miserable you feel.

Good luck!

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A note: if you aren't reacting to the granola bar (oats) then it may NOT be gluten, but could be WHEAT. If it were me, I would try eliminating wheat before i tried the full-blown gluten-free diet. See how you feel. If you feel better but not 100% then maybe consider eliminating gluten as well. All depends on how miserable you feel.

Good luck!

Not all people with celiac disease have a reaction to oats.


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

------------------------------------------------------------------------------------------------------------------

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Thanks for all the replies! I think it must be some kind of intolerance or allergy because I forgot to mention I get sores on my tongue too - they don't last long and you can't see them too well, but I can feel them. I'm definately going to watch the gluten this week and right down everything I eat and see if it gets better again. Then I'll talk to my doctor and see what he thinks.

Thank you!!


Kristen

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Thanks for all the replies! I think it must be some kind of intolerance or allergy because I forgot to mention I get sores on my tongue too - they don't last long and you can't see them too well, but I can feel them. I'm definately going to watch the gluten this week and right down everything I eat and see if it gets better again. Then I'll talk to my doctor and see what he thinks.

Thank you!!

While you are puzzling things out get yourself some gluten free sublingual B12 tablets and a good vitamin, gluten free of course that has a good amount of the other B's and C's. The sores on your tongue could very well be related to vitamin absorption problems.

If you are going to use dietary exclusion as a trial be sure to be positive all you are eating is gluten-free. The best way to do this at first is by using only whole, naturally gluten free foods. Many processed items can have hidden gluten in flavors or processing issues, as can meds, even tummy ones, so be sure to check those also.


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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