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Off Gluten For 1.5 Years, But Having An Endoscopy For Nausea Next Month. Dr Wants Me To Eat Gluten To Get An Actual Diagnosis, Should I?

endoscopy celiac diagnosis

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Posted 27 December 2012 - 04:58 PM

Thank you, this is my first day on this site and I plan on reading and learning a lot. My doc wanted me to get another biopsy and I declined. All I know is that as soon as I eat gluten I get sick and I don't want to get any more tests. The past 2.5 years I had every test under the sun, was told I have IBS and even MS ...the 6 months eating gluten-free I felt like a new person. I need to listen to my body and keep gluten out of it.
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Posted 27 December 2012 - 05:12 PM

Just a thought, I didn't read all the posts but... I've been gluten-free for at least 2 years if not more, I just tried casein free... See what happens. Same things happened to me, but the stomach aches were coming back more frequently so I decided to try it...I saw immediate results. Best of luck. Ps don't eat gluten again, it's not worth it!!! Never know what your reaction will be this time!
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Posted 27 December 2012 - 05:31 PM

Is casein milk ? All dairy ? Wow , is it difficult to eat gluten free and dairy free? I do really well for a while gluten free then I will have a slice of pizza or bread and within minutes I have symptoms, I need to completely eliminate it forever. I do get cramps sometimes with dairy, especially ice cream. I am excited about this site :-) thank u
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Posted 27 December 2012 - 06:23 PM

Is casein milk ?

Casein is the protein in cow's milk. Lactose is the sugar in it.

Most people with celiac disease have issues with lactose until their intestines heal enough that the villi can again produce the enzyme lactase, which is needed to digest lactose. They can then reintroduce dairy.

If your issue is with casein, then a completely dairy-free diet is needed. You may be able to tolerate ghee.

If you tolerate casein, but have trouble with lactose, some cheeses may be okay for you. The harder the cheese, and the longer it has aged, the less residual lactose in it. For example, Parmesan and old Cheddar are low in lactose. Brie and Camembert have much more lactose content.
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Diagnosis by biopsy of practically non-existent villi; gluten-free since July 2000.
Type 1 (autoimmune) diabetes diagnosed in March 1986
Markham, Ontario (borders on Toronto)

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Posted 27 December 2012 - 06:26 PM

Milk is made up of milk sugars (lactose), protein (casein) and fat. Most celiacs do not tolerate milk sugars when first diagnosed because the damage to their small intestine means they cannot produce the enzyme lactase; however, they can often tolerate yogurt, hard cheese, dairy products where the lactose has been removed or predigested. Casein is digested by a different enzyme and if you are casein intolerant it means you really can't have any dairy. Those who are only lactose intolerant can normally resume dairy once their guts have healed.

Ice cream, cream and milk are very high in lactose; butter is mostly fat; cheese is casein and fat mostly. Many posters on the board are dairy and gluten free and there are plenty of recipes and threads on this. :)

(Posting at the same time as Peter :P )
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"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson


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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Posted 28 December 2012 - 03:46 AM

Thank you both ! This is extremely helpful, I will search the boards and starting today eliminate casein as well. I seem to be okay with yogurt so it makes sense now.
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Posted 28 December 2012 - 11:02 AM

Hi safetydancepants (good name!!)
I am in the same predicament as you!
What have you decided?
My blood work came up positive, I was very very ill, and decided to go gluten-free. I ended up waiting for 3 months for an endoscopy so I am glad I gave up the gluten. However. My consultant doc said there was no point doing the endo until I started eating gluten again, I pushed her, and she did it. She found a hiatus hernia and scalloping of the duodenum (3-4 months after being gluten free). They pulled the endoscope out unfortunately as I was apparently naughty and started biting on it!!
She then insisted quite vehemently I had to do a challenge anyway!
Ha! What are these people on?
I have to go in March 2013. I have decided that they can stick their gluten challenge 'where the sun don't shine'...
Have the endo, see what they find. Who knows? Good luck, love to know your outcome :)
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Diagnosed Celiac Oct 2012 (Blood and Biopsy)
Gluten free / Dairy free / Caffeine / Almost sugar free / Tobacco free 2012. Corn free 2013
Vegetarian since 1986 / Asthmatic since 1990 / Migraines since 1998


Symptoms: Classical GI symptoms. Fibromyalgia. Odd pains. Bone aches. Severe headaches. Severe depression. Anxiety. Diagnosed with severe anaemia. Severe Vit D deficiency. Boderline Folate & B12 Defiency.


Since being gluten free... initially felt better for a month, still suffer with loose bowels, am currently struggling with many more allergies and intolerances to foods, such as dairy, egg, celery, oranges, tomatoes, quinoa, seeds,... Pressure hives (from Feb 2013) / Having bad leg aches during periods (June 2013)

(Marked in bold, these problems have been resolved)



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Posted 16 January 2013 - 10:02 AM

Original Poster back to let you all know how it went:

I stuck to my guns and refused the gluten challenge. I just had my endoscopy yesterday, so I don't have my pathology results yet, but just by looking, my doctor found a hiatal hernia and an area of irritation that he believes to be caused by acid reflux. I am amazed how negative my GI is -- he told me over and over that 'daily nausea may just be what is normal for you,' and even said that after the endo and finding those issues. I've continued to tell him that I am not willing to accept that I will be sick the rest of my life (I am 25 -- I have a lot of potentially healthy years ahead of me!). I am going to get my biopsy results (looking for H. Pylori and a few other things, not celiacs since I haven't been eating wheat) within the next 2 weeks, and I am doing one further test with this GI -- a breath test that monitors how my body and bacteria in my stomach digests sugar water after a day of fasting, that is supposed to indicate some specific kind of bacteria overgrowth. After I finish those tests, I will be taking my test results and high-tailing it back to my naturopath, where we can look at options to treat these things.

I will post again once I get my pathology results, but wanted to give an update at this point. Thanks again to everyone who helped me make the right decision!
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