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124chicksinger

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124chicksinger Apprentice
124chicksinger
Posted

IGA Serum, high 560 - the doctor said nothing about it; didn't even mention it to me.

 

Tissue Transglutam AB IGA - 1  -  Antibody not detected

Tissue Transglutam Ab IGG - 1 - Antibody not detected

Endomysial SCR IGA w/rfl - negative

 

biopsy pathology - negative for celiac damage

 

------

While I'm happy with this, I do believe I'm gluten sensitive or intolerant. Also in reviewing this disease, candida comes up a lot with similar and same symptoms.  I was certain after the scopes the doctor said the inflammation in my esophagus could be related to yeast.  I mentioned this today, and he said "i would never say that."  Basically, he said that Metformin could be giving me some heartburn, and I should for the diverticulosis eat a high fiber diet with plenty of whole grains.  I'm as healthy as a horse, and I feel so ill. 

 

I told him I eliminated the obvious sources of gluten since the scoping and will continue on that path because perhaps I'm sensitive/intolerant.  His answer was "whatever...if you want to do that, do that."  I have the feeling he doesn't believe in gluten intolerance/sensitivity.  

 

I am done trying to put a name to whatever is causing my bloating and pain and apparently inflammation in my digestive tract.

 

Thank you everyone for listening to my issue while trying to find out and "diagnose" my ills.

 

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GFinDC Veteran
GFinDC
Posted

Hi,

 

It's fine to go gluten-free without positive test results.  There are no tests for non-celiac gluten intolerance (NCGI) yet, so the  only way to know is to trial the gluten-free diet.  And there are probably a lot more people with NCGI than with celiac disease.  Do stick with the gluten-free diet for at least 6 months and record your results.  A food / symptoms diary can help you pinpoint food reactions.

nvsmom Community Regular
nvsmom
Posted

My kids were negative on their celiac disease tests too so now that they are gluten-free and feeling better, the improvement is viewed as a "coincidence" by their doctor. NCGI is very real and has basically all the same symptoms as celiac disease except the villi atrophy and the dh rash. Nasty! I hope you feel better soon on the gluten-free diet. :)

And ditto Paul, a food and symptom journal is really helpful to see patterns when most symptom changes are too slow to notice on a day by day basis.

cyclinglady Grand Master
cyclinglady
Posted

I would give up gluten for six months. It is worth a try. My cousin gave up gluten after getting a negative endo. She feels much better. My husband gave it up 13 years ago without a formal dx.

Then you need to track your foods to see what might trigger other issues besides intestinal. Like red wine triggers my rosacea. I am allergic to milk proteins, nuts and intolerant to eggs and garlic. Besides being gluten-free, I am on a very low carb diet now to keep my blood glucose levels low. But after a year, I am finally feeling better.

I guess what I am saying is to not give up!

Oh, you have been diabetic for a long time. Did the GI check for gastroparesis which is caused by diabetic related nerve damage in the gut?

NoGlutenCooties Contributor
NoGlutenCooties
Posted

 I have the feeling he doesn't believe in gluten intolerance/sensitivity.  

 

You may want to find a new doctor.  Doctors tend to be very slow to accept anything that cannot be cured with a drug.  It is as if it goes against their DNA.

I agree with the others on this one... try going 100% gluten free for a few months and see how you feel.  If that isn't enough to convince you, go back to eating gluten and see if your symptoms come back.  If you have non-Celiac gluten intolerance then the results of this self-test will be enough to convince you never to touch the stuff ever again - no matter what the doctors say.

124chicksinger Apprentice
124chicksinger
Posted
  • Author

Thank you all for your responses.  Cycling lady, thank you for mentioning gastroparesis; I saw that during my "research" into my symptoms, and I do not think it is that (no nausea or vomiting), and I have been Dtype2 for about 14 years.

 

For 10 days now, since I had the scopes, I am eating gluten free, even looking for/avoiding the hidden gluten.  To my surprise, I am not hungry.  I have no cravings at all, not even for the obvious carbs.  I started taking a probiotic 2 days ago. I am logging all meals, glucose readings, bathroom habits, and weight.

 

Is it okay to continue to post here even tho the tests state I am not celiac? I don't want to be considered a poser.  I plan to be gluten-free for at least 3 months and see what difference it makes.

cyclinglady Grand Master
cyclinglady
Posted

Of course you are welcome at this forum! It is for anyone struggling from the effects of eating gluten or those helping family or friends.

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GottaSki Mentor
GottaSki
Posted

Absolutely you are welcome...regardless of diagnosis we all struggle with the same issues.

NoGlutenCooties Contributor
NoGlutenCooties
Posted

 To my surprise, I am not hungry.  I have no cravings at all, not even for the obvious carbs.  

 

I didn't have any added hunger or craving issues either.  I've only been gluten free for coming up on 6 months and just had my first gluten-free roll a couple of weeks ago.  That was the first I even wanted anything close to bread.  Consider yourself to be very lucky... some people seem to have horrible withdrawal.

Oh... and of course you're welcome here!  Anyone with gluten issues is welcome - diagnosis or not.  :)

GFinDC Veteran
GFinDC
Posted

Yes, yes, u r berry, berry welcome here! :)

 

Lots of people come to the forum to try and figure out if they have a gluten related issue, and their tests don't show it yet or maybe never.  Since there is no accepted testing for NCGI, it leaves it up to us to figure out if we have it or not.  Docs ain't much help at the moment.  Even celiac testing has flaws and is not 100% accurate, after all these years.  The positive results are more accurate than the negative results..

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