9 Months With No Conclusion, Waiting On New Gi Doc, Advice On Tests/ What I Should Push For? Pics Linked

[ezgoindude]

Sup guys, I've posted before but I thought after a couple months i'd be back posting my diagnosis/ sight of relief.  I am nowhere close,  the GI tells me after we've done a couple months gluten free we notice I'm not losing weight anymore that it is a success, keep doing what I'm doing i'll see him in 3 months. 

 

I wouldn't mind that reply except we still HAVE NO IDEA what it going on?!?! 

My coworker has two relatives, one with celiac and one with crohns, she knows alot about this and is pushing I have a crazy version of food intolerances whos got me hooked up with an awesome GI doc, but I won't get to see him for a month......

 

What I do know is eating any form of gluten will bring back violent symptoms within hours/days, and take weeks/months to level back.  In terms of indigestion I've had to cut out all grains, corn and soy as they speed up my stool transit time and usually end up in the toliet undigested.

 

The current symptoms that wont shake themselves are not gaining any weight, tend to lose every so often.  Stools that vary, on a bad day are wet/glossy, clay colored, float on surface of water.  I occassionaly get burning in the stomach if I don't eat or eat at certain restaurants/foods,  and out of nowhere my legs/wrists tingle or can feel numb.  (let us not forget the dry skin and slow but gradual hair loss)

 

 

MY QUESTION BEING:   Can anyone relate?  I look back 3 months ago and feel blessed at how much more energy/mental clarity I generally feel daily, but it is still so difficult to get a grasp on how to improve further when some symptoms won't shake and my doc is so fearful he won't diagnose me after 9 months.

 

Since it looks like i'm the new university lab rat,   what tests should I be looking for next?

 

 

 

 

 

 

 

 

 

 

anyways  heres my current specs:

 

was on PPis for almost 5 months, no longer taking as of 2 weeks ago

I take no drugs, multivitamin, fish oil, vitamin d 10,000ui daily, sometimes biotin

will occassionally use probiotics/digestive enzymes

 

Current "problems" caught through my various labs

 

Platelet count  124     LOW

Vitamin d          25.7   LOW

Calprotectin level:   151  ABNORMAL  (doc says this level of inflammation could really stem from anything, including food intolerances beyond gluten.   Yea, thanks for the specifics man)

 

 

 

Celiac tests:               NEGATIVE?

Immunoglobulin A, Serum :  316

Deanimated Gliadin IgA        5

Deanimated Gliadin IgG       2

(tTG) IgA                          under 2

(tTG) IgG                               2

 

IBD tests:                   NEGATIVE?

Sedimentation Rate:            2

C-Reative Protein:              .3

 

My metabolic panels, complete blood counts, thyroid tests, all back completely average/normal.

 

Attached are links I posted of my endoscopy/colonoscopy from March of this year, immediately after I started on a SCD/Paleo like diet and noticed symptoms had reduced significantly.......

 

 

photo of duodenal bulb:

 

<a href="Open Original Shared Link" target="external ugc nofollow"><img Open Original Shared Link border="0" alt=" photo photo.webp"/></a>

 

 

ALL photos from endoscopy:

 

<a href="Open Original Shared Link" target="external ugc nofollow"><img Open Original Shared Link border="0" alt=" photo photo219.webp"/></a>

 

 

 

ALL photos from colonoscopy:

 

<a href="Open Original Shared Link" target="external ugc nofollow"><img Open Original Shared Link border="0" alt=" photo photo116.webp"/></a>

[ezgoindude]

Sorry, links I posted don't work, this should set it up.

 

 

 

FYI the GI doc said I had a perfect colon prep,  the only abnormality was partial chemical gastritis and my duodenum/ duodenal bulb looked extremely flat, the GI is still pushing the idea of celiac disease/ gluten intolerance.    Of course, the biopsy for my duodenum came back normal, which even the GI disregarded as non credible.   and the saga continues.....

 

Colonoscopy photos:

 

Open Original Shared Link

 

 

Endoscopy photos:

 

Open Original Shared Link

 

Duodenal bulb:

 

Open Original Shared Link

[ezgoindude]

Third time the charm?  Oh, completely unrelated, the colonoscopy came back that I had a few internal minor hemorrhoids.  awesome, ha

 

Colonoscopy pics:

 

Open Original Shared Link

[nvsmom]

Do you know the ranges of your lab tests? I am guessing the upper range was 4, but sometimes there are labs with ranges up to 20 or only up to 1.

 

If the upper limit was 4, it looks like your celiac disease tests were normal except for possibly the DGP IgA (5) but I would need to see the normal range to be sure.

 

I know little about the endoscopy so I did not view your links - I wouldn't be able to help anyways. I do know that hemorrhoids are not unusual with celiacs though. Lucky us.

 

I did want to comment on your low platelet count.  That could be thrombocytopenia or ITP. You want to keep an eye on that. Thrombocytopenia is linked to celiac disease and some doctors recommend that everyone with it be tested for celiac disease.

 

I had a fairly extreme case of ITP a few decades ago before I was diagnosed. It caused me to be anemic to the point of needing a blood transfusion, and my platelet count got so low I was considered critical for a while. Yours is not too bad now but if it gets below a 100, or near 50, see a doctor about it.  

 

Warning signs of really low platelets are easy bruising, frequent nosebleeds, bleeding gums, and petechia (tiny red dots on the skin). Anemia is common with low platelets too.

 

Best wishes.  

[IrishHeart]

Hemorrhoids are not unusual, period. I know people with those and they do not have celiac.

 

 

"Hemorrhoids are common ailments"--says the Mayo Clinic. 

 

No celiac doctor would diagnose from a "visual." Biopsy is the diagnostic protocol.

 

There are many reasons for low blood platelets, hon. But you have not provided the range from the lab. "Low" could be one point and be insignificant.

 

My friend has it and she is not a celiac. She has a cancer of the blood that they treat.

 

Open Original Shared Link

 

You may want to see a hemotologist if you are worried about your blood work.

[ezgoindude]

Thanks for the wait, my work schedule can be crazy during graduation week here.   and thanks for replying!  Other personal experiences are key for me in deciding what direction to take, Im really baffled that my doctor works for a national recognized university and is this static over my health. 

 

to Nvsmom, the platelet count is concerning to me, as I have noticed daily cuts and bruises are taking a full month to go away, versus a few days.  Yea I think the healthy level is around 150,  and my doctor gives:  well thats a symptom we're not going to be concerned about right now..... wtf?!  how about he tells me at least how any one of my symptoms is coming from, then he decide on which ones lol.

 

to IrishHeart, thank you for the link.  My doctor only took one sample from the duodenum because he felt he struck gold on my celiac/NCGI diagnosis, the spot he grabbed maybe was normal?  I've hear people say you need 4-6 samples for an accurate  reading.

 

 

I guess where I'm stuck is i've already asked him about crohns, gall bladder diseases, cirrhosis, pancreas difficiency?   If my thyroid is ok maybe yeast or SIBO?  The doctor has this fantasy idea that I have several allergies that combined affected my quality of life and physical attributes.

 

I look back at this and I had bathroom issues for almost 4 years, part of me thinks I just have irreversible damage or something...... little bit depressing!

[nvsmom]

Thrombocytopenia is possibly a bit more common among celiacs than everyone else. You doctor should be told it is linked to celiac disease. Open Original Shared Link

 

I'll come back later... company arrived.

[nvsmom]

Back...

As I was saying, 124 is a bit low but it could just be a natural low and will bounce right back up. From what I know, doctors do not worry much about it until your count is below 100, and they start treating it by 50, and quite aggressively treat it if it hits 30. 124 is not too bad. When I had my case of ITP, my count was 2.  

 

I do think you should get that rechecked in the future just in case it is not a "blip" and is foreshadowing of something else. Just in case.

 

And you are right about the number of biopsy samples taken - 6 or more is usually the best way to go.