Diagnosis- Colonoscopy Vs. Endoscopy

[Kelsie]

Hi,

I am new to this forum and I'm hoping to get some help. I've been terribly sick since March, off work because everything I ate went right through me. I was having BM's probably 10-15 times a day and was totally exhausted and lethargic. I've lost 20 lbs since March. And 3 lbs since just last week. I've also had unexplained anemia for 15 years plus.

I am now managing better, but working from home, not enough energy to commute into my office. I can only eat small amounts of food at a time and sticking to rice, oatmeal, chicken, steamed veggies and baked fruits.

In the past, I have suspected that I have a wheat intolerance. Would get hugely bloated and cramping after consuming too much wheat. I also suspect I'm dairy intolerant as well.

I was also diagnosed with Rheumatoid Arthritis about 8 years, which is an auto immune disease.

My fam doc sent me to a GI specialist, who did a colonoscopy on me about 3 weeks. I see him next week for follow up. He also did bloodwork checking for celiac. I know the pathology of the colon biopsy came back negative. He took biopsy from the large colon and small intestine (terminal ileum).

I am very worried when I see the GI next week he is going to brush this off as IBS.

I've read that the gold standard for celiac testing is an endoscopy with a biopsy from ????? That's what I'm not sure of and I want to be able to ask the doc about this next week.

I also suffer from headaches that last full day or sometimes more. But this hasn't been as severed in the recent months.

Any diagnosis help or advice would be greatly appreciated!!

Thanks!!

[nvsmom]

You definitely have celiac disease or non-celiac gluten intolerance (NCGI) symptoms.   About 50% of celiacs are lactose intolerant at diagnosis as the damaged villi won't make lactase to digest the milk sugars (lactose).

 

The "gold standard" is a positive biopsy from an endoscopy. Positive sample are seen more at the upper/beginning portion of the small intestine and generally decreases in severity towards the distal end near the large intestine.  A minimum of 6 biopsy samples from the small intestine is recommended as damage can be spotty and easily missed.  

 

This report discusses the biopsy on pages 7-10

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Most celiacs are also diagnosed with positive blood tests. Before cutting wheat from your life, you might want to have the as many tests as possible run.  These are the most common:

tTG IgA and tTG IgG

DGP IgA and DGP IgG

EMA IgA

total serum IgA (control test)

AGA IgA and AGA IgG (older and less reliable tests)

 

If your celiac disease tests are all negative, it could be NCGI. Unfortunately there are no tests to diagnose it yet except for a positive response to the gluten-free diet (after 3-6 months).

 

IBS is not really a diagnosis, it's more of a symptom description.   Someone around here said that IBS is doctor-ese for "I Be Stumped".  

 

Best wishes. I hope you find answers.

[Fenrir]

Hopefully the GI Dr. did the right celiac tests.

 

I'm sort of curious why they didn't wait to see how the celiac labs came back before they did the colonoscopy. If was positive they could have just done the colonoscopy and EGD at the same time.

[Kelsie]

You definitely have celiac disease or non-celiac gluten intolerance (NCGI) symptoms.   About 50% of celiacs are lactose intolerant at diagnosis as the damaged villi won't make lactase to digest the milk sugars (lactose).

 

The "gold standard" is a positive biopsy from an endoscopy. Positive sample are seen more at the upper/beginning portion of the small intestine and generally decreases in severity towards the distal end near the large intestine.  A minimum of 6 biopsy samples from the small intestine is recommended as damage can be spotty and easily missed.  

 

This report discusses the biopsy on pages 7-10

Open Original Shared Link

 

Most celiacs are also diagnosed with positive blood tests. Before cutting wheat from your life, you might want to have the as many tests as possible run.  These are the most common:

tTG IgA and tTG IgG

DGP IgA and DGP IgG

EMA IgA

total serum IgA (control test)

AGA IgA and AGA IgG (older and less reliable tests)

 

If your celiac disease tests are all negative, it could be NCGI. Unfortunately there are no tests to diagnose it yet except for a positive response to the gluten-free diet (after 3-6 months).

 

IBS is not really a diagnosis, it's more of a symptom description.   Someone around here said that IBS is doctor-ese for "I Be Stumped".  

 

Best wishes. I hope you find answers.

Thank you!  Much appreciated I like the IBS comment, sad but true.

I think the doc was more concerned about Crohn's and colitis and not really thinking it was celiac.  When he said he would do the Celiac blood test I told him I only eat gluten free pastas and breads, with the occasional cheat meal.  And his response was "ya but do you still eat things like mustard"...this was right before I went under, so I think I mumbled "yes" and then I woke in recovery and haven't seen the doc since....lol. 

[nvsmom]

Mustard? I think most are gluten-free... Weird. 

 

If the blood tests are negative, you might want to retest after a gluten challenge (8-12 weeks of 1-2 slices of bread per day).  Let us know how it goes.