• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Newbie - Where Do I Fall On The Spectrum?
0

6 posts in this topic

Recommended Posts

kaytuh    0

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!!

 

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


nvsmom    332

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!  :)

Share this post


Link to post
Share on other sites
Georgia_guy    13

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)

Share this post


Link to post
Share on other sites
kaytuh    0

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!!!!

Share this post


Link to post
Share on other sites
kaytuh    0

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!

Share this post


Link to post
Share on other sites
Ads by Google:


NatureChick    18

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.

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

0

  • Forum Statistics

    • Total Topics
      107,882
    • Total Posts
      938,464
  • Member Statistics

    • Total Members
      65,788
    • Most Online
      3,093

    Newest Member
    KaitlinP
    Joined
  • Popular Now

  • Topics

  • Posts

    • Sorry to hear about the loss, bread is a pain for some, Canyon house makes one many swear by...I have 2 issues with it so I can not even try it. I been using Julian Bakery Bread for awhile, the seed one was wonderful even toast like gluten bread, while the coconut one made the most amazing french toast, and the almond one was great toasted with mashed avocado. I recent perfected a sandwich bread for my bakery, so will be making my own grain free, starch free, 1 net carb bread loafs for myself.
      NOW a bit more on this topic, I am currently converting it to a sugar free German chocolate cake loaf for testing this weekend (these are going to be bakery item only for my store)
    • Hi everyone! I am a 23 yo female and was diagnosed Celiac in January 2016 and have been gluten free since then. My IgA levels are down to 4 and my Celiac is very under control. However, I recently have been dealing with a lot of unexplainable pain and discomfort that no one can seem to explain to me and wanted to see if anyone has experienced anything similar. For about a year, I have been occasionally getting severe abdominal pain that seems to be concentrated in my rectum. It starts by feeling overall icky, crampy and sort of like I have "twinges" in my rectum. It feels like maybe I need to have a bowel movement but I dont, and if I do it doesn't help the pain. So I feel bad, and then all of a sudden I feel like I am being stabbed in my rectum. The stabbing comes and goes but causes me to like roll around on the floor it is so painful. This sometimes only happens once and is over in 20 seconds, but generally it is an all day thing and lasts like 8-10 hours. These generally have been coming 2-3 times per month one day apart. They seem to come about every four weeks (not during my period or ovulation though) and naproxen and heat helps some, so I thought it was maybe OB/GYN related (they also started shortly after I switched for BC pill to an IUD) but I have seen two OB/GYNs and both have no idea and think it is gastrointestinal, maybe gas pain of some sort that is possibly triggered by hormones related to my cycle. However my gastroenterologist is also stumped and thinks its related to my uterus cause it seems to be somewhat cyclical. Anyway they're horrible and I can't figure out what they are, they don't seem to be related to what I eat (though I should probably start tracking) or a particular time of day. Sometimes they seem to come while I am exercising, but sometimes they wake me up in the middle of the night. I should also add that I have no GI symptoms involved with these painful episodes, my bowel movements seem completely normal, no gas or anything either. Also, the last two days, I have woken up in the middle of the night with the feeling of being bloated and crampy. Not painful per say but extremely unpleasant. Again, I'm not on my period so idk what is causing this, especially cause both times it woke me up and I am a deep sleeper. Now, for the last 30 minutes I have been having non-painful muscle spasms in my left lower abdomen. It feels like a flutter, if I put my fingers against the spasm I can feel it distinctly. Again it doesn't hurt, but feels weird and I've never had a muscle spasm there before. If anyone has ever had any of these symptoms before or has any idea what me going on I'd be very grateful! Is it possible its related to glutening? Since I caught my Celiac really early I don't really know what my symptoms of being glutened are, the few times I know I have been I don't get diarrhea but instead extreme bloating, acid reflux, and overall feeling really crappy and anxious. I have a whole host of health issues these days that have been causing me a lot of stress (I'm in medical school and don't have time for these debilitating pains!) and it would be awesome to have some answers.   Thank you all, K
    • Thank you!   I see a Dietician early next month and figured I will need to be more strict early on.    There is so much to learn.  I am grateful for the apps available that allow me to scan UPC's to find out what is and is not gluten-free, but will be confirming by reading labels  too.   I cleared out quite a bit of space in my cupboard today.  It is only me in the house since I lost my husband earlier this year so it will be easier to control what is in the house.    He loved bread as much as me so it would have been much harder with the 2 of us here
    • Welcome to the board. Many of us keep safe gluten free snacks on hand for times when we are away from home.  In addition to what Karen mentioned fruits, nuts, hard boiled eggs etc. If it is a long trip a cooler can keep stuff fresh for you and they make ones that you can plug into your car. How were you diagnosed? Many folks carry the genes but don't develop celiac. You should have had a celiac panel blood test and an endoscopy. If you are new to the lifestyle then do check out the Newbie 101 threead at the top of the Coping section. it has a lot of info to keep you safe.
    • If you are super sensitive (or have become super sensitive) there is an oats purity protocol used by just a few companies. The fields do not grow gluten containing grains for 4-5 years before the oats are planted, the fields are walked several times a season for any plants not belonging to be pulled by hand, and all the equipment and facilities used to harvest are dedicated equipment. It's a bit pricey, but it produces the only oats that I don't react to (although I have not tried all certified gluten free oats).  There are a couple variations of magnesium. Some cause loose stools so check the source of magnesium (and make sure it's gluten-free). Calm I've used with no problem. If you are stressed, you will burn through magnesium faster.  Roommates create some complications. I had a shared kitchen for a vacation this past year, and I was constantly cleaning. I'm so used to my gluten-free kitchen I became very aware of sinks being used to pour pasta water in, bread crumbs left from a cut sandwich, and how much gluten a simple sponge can be exposed to. I kept my sponge to clean my area in a ziplock bag next to the sink. And if I was cleaning fruit or veggies, I filled a large bowl with water to use so I wouldn't have to always be cleaning the sink. If you have wooden utensils, make sure they aren't be accidentally used. A friend was getting cross-contaminated from shared condiments.  My celiac reactions for cross contamination are not gastro but neurological so I can't offer much with that. A proper glutening is the only thing that gives me gastro symptoms, and it is the most painful experience! In either case, I drink lots of water. I will drink a gallon on those days. Throw some Calm in there, but force fluids. I also use Ultima Replinisher (which I typically use after exercise) if I'm forcing fluids, and I drink mugs of warm broth if my gut is really not doing well.  Hang in there, C. Hope you feel better soon.     
  • Upcoming Events