Newbie - Where Do I Fall On The Spectrum?

[kaytuh]

Hi All! I've been lurking here for a month, ever since my postive blood tests. I'm feeling pretty comfortable with some of the basics, but now that I've recieved a postive bioposy I wanted to really dive into what's going on in my body, and how I compare to others. Here goes...

 

Current Age: 24
 

Symptoms: Just general stomach aches and cramps my whole life, I never noticed a particular gluten trigger, and childhood doctors dismissed it. So now as an adult I went to the doctor and mentioned I got a lot of stomach aches, and they reccomended a blood test to check for celiac. I have no family history of celiac.

 

Blood Test Results:

Transglutaminase Ab IgG/M/AL

Tragl IgM: 3/20/2014: 5.9 U/mL

Tragl IgA: 3/20/2014: 11.2 U/mL

Tragl IgG: 3/20/2014: 53.5 U/mL

 

(I'm confused if this is the full panel, or what blood tests these exactly are? Are they the Tissue transglutamise tests I've heard about on this site?)

 

Biopsy Results (I can't even begin to interpret these)
DUODENAL MUCOSA WITH LAMINA PROPRIA EXPANSION BY LYMPHOCYTES AND PLASMA CELLS, VILLOUS BLUNTING, AND INCREASED INTRAEPITHELIAL LYMPHOCYTES, SEE NOTE.

B: STOMACH, RANDOM, BIOPSY: : ANTRAL AND OXYNTIC MUCOSA WITH MILD CHRONIC INFLAMMATION. : NO HELICOBACTER ORGANISMS IDENTIFIED ON WARTHIN-STARRY STAIN (CONTROL SATISFACTORY). : DETACHED FRAGMENT OF INTESTINAL EPITHELIUM, NO SIGNIFICANT HISTOLOGIC ABNORMALITY.

NOTE: The findings can be seen in the setting of gluten-sensitive enteropathy (celiac disease), small intestinal bacterial overgrowth, drug-induced injury, tropical sprue, immune disorders, and sensitivity to non-gluten proteins; however due to the patient 's documented history of positive Celiac serology, the findings are most likely consistent with Celiac disease. Clinical correlation recommended.

 

So now I've been one week gluten free, and I'm starving all the time and still have D (only about once a day though) Since my pathology report says the findings could also be the result of other allergies (I have a lot), bacterial overgrowth (I've heard my crazy hunger could be candida overgrowth) or some other autoammune disorder- I'm just curious if there's any chance I have something else going on? How do my results compare with other patients? SO many questions!

 

Thank you!!

 

[nvsmom]

Welcome to the board.

 

I can't comment on the labs much because different labs have different normal ranges. Some are from 0-20, some are 0-3 or 4, and others are just up to 1. You definitely have at least one positive test result; your tTG IgG is at least double the normal limit and possibly as much as over 10 times the normal limit.... That is probably celiac disease causing that. 

 

It appears your endoscopic biopsy is positive too based on this:

DUODENAL MUCOSA WITH LAMINA PROPRIA EXPANSION BY LYMPHOCYTES AND PLASMA CELLS, VILLOUS BLUNTING, AND INCREASED INTRAEPITHELIAL LYMPHOCYTES, SEE NOTE.

NOTE: The findings can be seen in the setting of gluten-sensitive enteropathy (celiac disease), small intestinal bacterial overgrowth, drug-induced injury, tropical sprue, immune disorders, and sensitivity to non-gluten proteins; however due to the patient 's documented history of positive Celiac serology, the findings are most likely consistent with Celiac disease. Clinical correlation recommended.

 

With symptoms, a positive biopsy, and positive bllods tests, that's celiac disease.  

 

They said there were no helicobacter (bacteria) found in your stomach when they checked so it doesn't look like a bacterial problem to me.

 

Comparing to other celiacs can be helpful or not. There are over 300 symptoms related to celiac disease so people's stories will vary wildly.  I am like you in that I had stomach pain as a child that was dismissed by my doctors. I developed other symptoms and autoimmune disorders throughout the years though.

 

That's great that your D is improving already! That is quite fast.   Don't worry about the hunger, as that is quite a common experience early on while we learn how to eat new ways and your body adjusts.  You'll even out in the next few weeks or months.

 

Hang in there!  

[Georgia-guy]

Current Age: 24

Symptoms: Just general stomach aches and cramps my whole life, I never noticed a particular gluten trigger, and childhood doctors dismissed it. So now as an adult I went to the doctor and mentioned I got a lot of stomach aches, and they reccomended a blood test to check for celiac. I have no family history of celiac.

Welcome kaytuh! (Did I get that right?)

Different people will have different symptoms. You are lucky in the symptom aspect to just have the stomach aches and cramps! My symptom list would be about a page long....and I can't get my insurance to approve testing (another way you are lucky). You are welcome to message me and I will get you a listing of my symptoms. But I also want to say, I'm kinda glad I'm not the only one in the 20's age group here! (I'm 25)

[kaytuh]

Welcome to the board.

 

I can't comment on the labs much because different labs have different normal ranges. Some are from 0-20, some are 0-3 or 4, and others are just up to 1. You definitely have at least one positive test result; your tTG IgG is at least double the normal limit and possibly as much as over 10 times the normal limit.... That is probably celiac disease causing that. 

 

It appears your endoscopic biopsy is positive too based on this:

DUODENAL MUCOSA WITH LAMINA PROPRIA EXPANSION BY LYMPHOCYTES AND PLASMA CELLS, VILLOUS BLUNTING, AND INCREASED INTRAEPITHELIAL LYMPHOCYTES, SEE NOTE.

NOTE: The findings can be seen in the setting of gluten-sensitive enteropathy (celiac disease), small intestinal bacterial overgrowth, drug-induced injury, tropical sprue, immune disorders, and sensitivity to non-gluten proteins; however due to the patient 's documented history of positive Celiac serology, the findings are most likely consistent with Celiac disease. Clinical correlation recommended.

 

With symptoms, a positive biopsy, and positive bllods tests, that's celiac disease.  

 

They said there were no helicobacter (bacteria) found in your stomach when they checked so it doesn't look like a bacterial problem to me.

 

Comparing to other celiacs can be helpful or not. There are over 300 symptoms related to celiac disease so people's stories will vary wildly.  I am like you in that I had stomach pain as a child that was dismissed by my doctors. I developed other symptoms and autoimmune disorders throughout the years though.

 

That's great that your D is improving already! That is quite fast.   Don't worry about the hunger, as that is quite a common experience early on while we learn how to eat new ways and your body adjusts.  You'll even out in the next few weeks or months.

 

Hang in there!  

Thanks!!!!

[kaytuh]

Welcome kaytuh! (Did I get that right?)

Different people will have different symptoms. You are lucky in the symptom aspect to just have the stomach aches and cramps! My symptom list would be about a page long....and I can't get my insurance to approve testing (another way you are lucky). You are welcome to message me and I will get you a listing of my symptoms. But I also want to say, I'm kinda glad I'm not the only one in the 20's age group here! (I'm 25)

 

Thanks!

[NatureChick]

That language about villii damage having other possible causes sounds like the lab covering their asses so that they can't be sued. Likely a computer is set to automatically add that text based on a check box being clicked somewhere.

But go get yourself checked for vitamin deficiencies too. Celiac and malabsorption of nutrients go hand-in-hand, making deficiencies in a few specific vitamins pretty common. (And B12 deficiency's main symptom is abdominal pain.) Tests for deficiencies are an easy blood draw and not very expensive so no excuses not to check, though being younger, you're probably less likely to have issues than  if you were middle aged or older.

Things I would recommend researching as you continue to figure out ongoing issues: rotation diets and food diaries, FODMAP diets, and glycemic index. There are a ton of different food allergies out there but just becoming familiar with the food groupings (lactose, fructose, allium, nightshades, etc.) can help you make sense of your food diary as you try out FODMAP or rotation diets.

I would not worry about yeast overgrowth or leaky gut syndrome. Though yeast overgrowth is an actual medical problem, if you had it, you'd know it as the symptoms don't limit themselves to staying out of sight in your digestive tract. And leaky gut syndrome is a hypothesis that has never been proven despite scientists trying to do so repeatedly. There are plenty of defined medical problems that can be the cause the symptoms that people blame on yeast or a leaky gut so there really is no need to make up new ones.

I would make every effort toward getting a wide range of nutrients into your diet as soon as possible because it will help speed up the healing process. There are some things you can be doing to make foods easier to digest while you heal, such as avoiding chemical ingredients, and cooking veggies so that the fiber in them is already broken down a little. Look for gluten-free recipes online and try some new things. If you're afraid that they'll make you sick, just make small batches. If your gut flora is out of whack, getting some variety back in your diet is a great way to help get it back on track.
 

(Homemade popcorn is one of my go-to foods for soothing my stomach or fulfilling hunger. I use sunflower oil and pan pop but it is a whole grain so it acts as a prebiotic, is high in fiber which is good for digestion, contains protein and some other vitamins, and is satisfying. Just steer clear of microwave popcorn - too many chemicals.)

Some people swear by their probiotics but they don't seem to do anything for me. Vitamins are a mixed blessing, benefits being offset by side effects, so I would only supplement if you knew that you were deficient in something. 

But no matter what tests you get, keep doing what you're doing in getting the results and doing your own research. There are plenty of medical problems for which people test in the "normal" range, only to discover later that half the medical community doesn't agree with the range, or your country's range is totally different than the rest of the world's.