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This Is Silly, I'm Staying gluten-free!


Kimbalou

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Kimbalou Enthusiast

So, my GI doc told me to "liberlize" my diet and go ahead and eat wheat, gluten, etc. My endoscopy is next Wed. Yesterday I ate what I wanted (a pretzel, scone, starbucks coffe, milk...and paid the price!!) I know for sure that the Celiac diet has helped me this past week, so when I ate what I wanted yesterday, it wasn't worth it! The horrible gas and abdominal pain! So, I'm gluten-free again, and I will take that chance. I'm sure my gut won't heal in 1 week! I'm sure I've had this for years.

It's as if the Dr. said "we know Gluten is poisoning you, but go ahead and eat it so we can make sure your biopsy is positive.". Crazy, if you ask me. so, if my biopsy comes up neagtive, it would be a miracle to be cured in 1 week. My blood tests were highly positive, so I will go by that.

I am getting the endoscopy, but I will eat gluten-free and not suffer...


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Free-CountryGirl Apprentice

Agreed, stop eating the gluten :)

But I have ask, why do u need an endoscopy is your had positive blood tests?? Isn't that enough??

WheatChef Apprentice

The only good medical advice:

-Doctor, it hurts when I do this.

-Don't do that.

jerseyangel Proficient

The only good medical advice:

-Doctor, it hurts when I do this.

-Don't do that.

:lol: :lol: Ya got that right!

Kimbalou Enthusiast

Agreed, stop eating the gluten :)

But I have ask, why do u need an endoscopy is your had positive blood tests?? Isn't that enough??

The doctors like to get a definite diagnosis, and the only way is with a biopsy. I've decided to do it in case there is something else going on as well.

T.H. Community Regular

The more I hear about doctors telling us to do something that is hurting us, so that they can do a test, the more I sit and think: what ever happened to 'do no harm?'

Just because a test wasn't worked out in a lab, but was rather a gluten elimination followed by a gluten challenge, doesn't mean it doesn't have medical validity. It may mean you do a couple more tests to check for other potential reasons that the gluten caused an issue...but doing those tests wouldn't cause harm, while eating the gluten is.

It doesn't seem like the way of thinking that applies to celiacs is in our best interest, at times.

ravenwoodglass Mentor

The doctors like to get a definite diagnosis, and the only way is with a biopsy. I've decided to do it in case there is something else going on as well.

There can be other things going on but the hard question is...how often are those other things caused by the reaction to gluten? And if they are would they resolve with the diet rather than you having to take meds. For myself gluten was the reason for both an ulcer and severe diverticulosis and both resolved after I had been gluten free for a while without the scripts that I was given for the ulcers. You may want to consider holding off on the endo and having it done a few months after you are on the diet if you are still having issues. I'm not saying don't have the endo, the choice whether to do the test or not is yours alone.


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Happytobefree Newbie

So, my GI doc told me to "liberlize" my diet and go ahead and eat wheat, gluten, etc. My endoscopy is next Wed. Yesterday I ate what I wanted (a pretzel, scone, starbucks coffe, milk...and paid the price!!) I know for sure that the Celiac diet has helped me this past week, so when I ate what I wanted yesterday, it wasn't worth it! The horrible gas and abdominal pain! So, I'm gluten-free again, and I will take that chance. I'm sure my gut won't heal in 1 week! I'm sure I've had this for years.

It's as if the Dr. said "we know Gluten is poisoning you, but go ahead and eat it so we can make sure your biopsy is positive.". Crazy, if you ask me. so, if my biopsy comes up neagtive, it would be a miracle to be cured in 1 week. My blood tests were highly positive, so I will go by that.

I am getting the endoscopy, but I will eat gluten-free and not suffer...

I went this route also, but you have to intake gluten daily for a minimum of 4 weeks to get visible damage in your stomach and/or intestine. I think my GI thinks I am nuts because all my symptoms couldn't be proven. I had been gluten free for a year and a half before I went to get tested. I was so scared of intake and had forgotten exactly how I felt when I ingested gluten. I got a painful reminder, but I journaled all my experiences so I could inspire myself to live without. I held up for 2 to 3 weeks of the 2 month period my GI requested I ingest gluten. I will not do that again. I know I am so much better off without.

Good luck.

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    • par18
      Thanks for the reply. 
    • Scott Adams
      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
    • Scott Adams
      Yes, I meant if you had celiac disease but went gluten-free before screening, your results would end up false-negative. As @trents mentioned, this can also happen when a total IGA test isn't done.
    • Seaperky
      I found at Disney springs and Disney they have specialist that when told about dietary restrictions they come and talk to you ,explain cross contamination measures tsken and work with you on choices. Its the one place I dont worry once I've explained I have celiac disease.  Thier gluten free options are awesome.
    • Churley
      Have you tried Pure Encapsulations supplements? This is a brand my doctor recommends for me. I have no issues with this brand.
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