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Lost on Results

MadFuriosa
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MadFuriosa Newbie
MadFuriosa
Posted

The last time I saw my doctor was a brief visit and we didn't get to discuss but he said that I am celiac and handed my results that said

IgA - TTG high

Endomysial negative

Symptoms: fatigue, MAJOR bloat, weight gain 

I decided to try going gluten free since I can't see him for another month to even discuss further testing and my symptoms are gone! It's only been 3 weeks but I feel like a different person and I'm losing weight which I haven't done in 8+ years despite trying everything.

I am afraid he will suggest a endoscopy with biopsy since I feel so good and I'm also not sure it would be necessary at this point? I'm also not sure what to ask him when I do see him? Or should I stop my trial just in case?

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trents Grand Master
trents
Posted

The proof is in the pudding. You have a positive tTG-IGA and you feel much better after cutting out gluten. What more do you need? Ask the doctor to write in your medical chart that you have celiac disease and tell him you feel no need for the biopsy. He himself has already said you have celiac disease. Just ask him to put it in your chart.

Scott Adams Grand Master
Scott Adams
Posted

As long as you don't need a piece of paper from the doctor to keep you on a 100% gluten-free diet for life, then an official diagnosis certainly isn't required for any reason. 

For those who have symptoms (not all celiacs do), I almost believe that the diagnosis protocol should be change--if someone has a positive blood test for celiac disease, they should just go gluten-free for 2 months and their symptoms go away the diagnosis could be made at that point. This method would make life a lot easier and alleviate lots of extra time being miserable while eating gluten to get a biopsy done, and in some cases the biopsy might be negative anyway...then what? Many people in this situation remain in limbo for years because their doctors tell them to keep eating gluten...oh well, I'm just ranting here! 😉

trents Grand Master
trents
Posted

It would be nice to have in your medical record so other doctors you may go won't look at you sideways when you tell them you have celiac disease.

frieze Community Regular
frieze
Posted
On 12/15/2022 at 5:41 PM, Scott Adams said:

As long as you don't need a piece of paper from the doctor to keep you on a 100% gluten-free diet for life, then an official diagnosis certainly isn't required for any reason. 

For those who have symptoms (not all celiacs do), I almost believe that the diagnosis protocol should be change--if someone has a positive blood test for celiac disease, they should just go gluten-free for 2 months and their symptoms go away the diagnosis could be made at that point. This method would make life a lot easier and alleviate lots of extra time being miserable while eating gluten to get a biopsy done, and in some cases the biopsy might be negative anyway...then what? Many people in this situation remain in limbo for years because their doctors tell them to keep eating gluten...oh well, I'm just ranting here! 😉

This is, of course how it was done before the money making biopsy came into play...

trents Grand Master
trents
Posted
27 minutes ago, frieze said:

This is, of course how it was done before the money making biopsy came into play...

Actually, I believe the biopsy was the only diagnostic test available for celiac disease until about 30 years ago when the antibody tests were developed. And since most GPs don't do endoscopies, they don't make money by referring their patients to GI docs for endoscopies.

Wheatwacked Veteran
Wheatwacked
Posted

Looks like a duck, quacks like a duck. You get sick eating gluten. If the doctor can't prove that it is, are you planning to eat gluten? Not proving it is, is not the same as proving it is not. Be sure to get enough of all the essential vitamins; especially D and you'll do fine. The hard part is dealing with the social abuse.

 

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frieze Community Regular
frieze
Posted
On 12/17/2022 at 12:21 PM, trents said:

Actually, I believe the biopsy was the only diagnostic test available for celiac disease until about 30 years ago when the antibody tests were developed. And since most GPs don't do endoscopies, they don't make money by referring their patients to GI docs for endoscopies.

Go back further, it was trial and error.  Endo, 1956.  Gliadin testing 1964.

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    • StuartJ
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      By StuartJ · Posted

      Well, three months later and a startling revelation!  After going gluten free (and nearly bankrupt buying special foods), my wife made a lunch of meat potatoes and gravy made with Bertolli white sauce - no wheat there right?  Big flare up withing hours and I was really wiped out with it.  She rechecks the label on the sauce bottle and right at the bottom of the ingredients XANTHAN GUM. There's our #1 suspect again!  So by way of experimenting, she decided to try making a loaf of bread with just regular white flour like she used to do and see what happened; the familiar smell hit me when I walked in the door last night and I sat down to eat this still warm, fresh goodness - I thought even if I have to take Imodium sandwiches, it will be worth it 😋 No ill effects, either overnight or today!  Half the loaf is now gone because I had some for supper, saving just one last slice for breakfast in the morning` - I've used the bathroom once and that was normal, so maybe it is not the gluten after all? Can't wait to try a beer! 😁
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      By trents · Posted

      Unfortunately, the development of celiac disease usually is not an end in and of itself. It usually brings along friends, given time. It is at heart an immune system dysfunction which often embraces other immune system dysfunctions as time goes on.
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      Thanks so much for the responses. I will urge him to go for further investigation. To be 48yrs old and develop a new allergy.. ugh, As if celiac disease isn’t enough! 
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      By trents · Posted

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