Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

  • 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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Degrees Of Celiac?
0

13 posts in this topic

Hi everyone,

I, like many people in this section of the forum just received part of a Celiac diagnosis. My doctor, who I consider very good, said my celiac panal was "abnormal" and I am being referred to a gastroenterologist who I will see in three weeks. In the meantime, I have a lot of questions.

First of all, I have almost none of the symptoms that I commonly read about, and as far as I know, no other celiacs in my extended family (doesn't mean they don't have it, I know). We only found it because my iron/ferritin levels are relatively low and seem to have plateaued in coming back up. My hemoglobin seems fine now though. I don't have headaches, abdominal cramping, fatigue, or any of the other symptoms I've seen associated with celiac disease.

What I'm wondering is, are there degrees of celiac disease? I only hear about people cutting out wheat entirely, but I'm wondering if in some cases, people ever just have to cut back. Is it really all or nothing? I understand it's about healing of the villa in the small intestine, but I'm curious if in minor cases (if those exist), you can do fine with limited wheat intake. Am I just deluding myself?

I have a ton more questions, but I'll start with that. Thanks for your help in advance

0

Share this post


Link to post
Share on other sites


No. there are no "degrees" of Celiac that allow you to eat gluten. From some of the experts:

"The gluten-free diet is a lifetime requirement. Eating any gluten, no matter how small an amount, can damage your intestine. This is true for anyone with the disease, including people who do not have noticeable symptoms."

http://www.cureceliacdisease.org/living-with-celiac/guide/treatment

"Q: Is it ok if I ingest some gluten if I do not experience any symptoms?

No. The majority of patients with celiac disease experience no symptoms when they ingest gluten, either intentionally or unintentionally. This led to the concept that patients, especially children may grow out of the disease. In addition, patients also consider that it is doing no harm to them. However the ingestion of even small amounts of gluten results in damage to the small intestine--regardless of the presence or absence of symptoms--and puts the patient at risk for resulting complications including malignancies and osteoporosis. "

http://www.celiacdiseasecenter.org/A_Patients/A02-FAQ.htm

"If you accidentally eat a product that contains gluten, you may experience abdominal pain and diarrhea. Some people experience no signs or symptoms after eating gluten, but this doesn't mean it's not harmful. Even trace amounts of gluten in your diet can be damaging, whether or not they cause signs or symptoms. "

http://www.mayoclinic.com/health/celiac-disease/DS00319/DSECTION=treatments-and-drugs

2

Share this post


Link to post
Share on other sites

In addition to the great info above keep in mind that celiac is an autoimmune disease and does not just damage intestines. It can also damage pretty much any organ including but not limited to gallbladder, thyroid, liver and brain.

It you have positive blood work you are producting antibodies even if you don't have any noticeable symptoms if you consume gluten.

2

Share this post


Link to post
Share on other sites

NST,

Hi there and welcome. I am by no means an expert and just having found out I am celiac, I am still learning myself.

BUT, as far as having it with no symptoms, I am a perfect example. I am 49 yrs. old and my body finally let me know w/ DH to get off of gluten.

Looking back, there are many signs. As a child, I was diagnosed with gastritis (celiac? maybe). In my 30's, I was diagnosed with Type II Diabetes (?). In 1991, I was diagnosed with MS, but after initial double vision, I have not had any more issues with that (ataxia, maybe). Seven years ago, I was very lucky when they accidently found out that I needed triple bypass open heart surgery (no symptoms). I have been diagnosed with and on meds for depression and chronic anxiety (celiac maybe). I also have Hashimoto's which is very likely tied to celiac.

So, you see, I have been walking around all of these years with all kinds of ailments and just not ever really feeling good. I guess getting DH might be a blessing in disguise (keep trying to tell myself this when I am up nights itching like the devil). I'm hoping that once I get all of the gluten out of my body, my life will change for the better with more energy, stamina, and better health.

Another thing, I always thought you had to be thin and malnourished to have celiac. I just found out it can cause obesity, also. That would be my case, but since being gluten-free for four weeks now, I have been losing weight w/o even trying. To think that I have struggled most of my life to get this weight off to no avail, and it could have always been from celiac.

I hope my story helps you, Laura :)

0

Share this post


Link to post
Share on other sites

I forgot to mention that I have had issues with my pancreas off and on over the years and my liver enzymes are ALWAYS elevated no matter how well I eat (before gluten-free). Also, just to let you know how serious this is, my Mom is dying from cirrhosis (from celiac) and she was diagnosed around 30 years ago and has been VERY strictly gluten-free.

I don't mean to scare you, but this must be taken seriously. Yes, it is all or nothing, but if you make up your mind and accept it, it is doable.

Laura B)

1

Share this post


Link to post
Share on other sites

Right, no degrees of celiac, it is an autoimmune disease, and the immune system is not very forgiving to enemies.

There are cases where people have no GI symptoms, and they are called silent celiacs. But that doesn't mean the damage isn't being done. Symptoms for celiac can be all over the board, in any organ of the body, not just the gut. That's one of the things that makes it hard to diagnose.

1

Share this post


Link to post
Share on other sites

Thanks everyone for all of the information. Kareng, I appreciate the links - those are the kinds of things I think I need to read. I'm still holding out hope that it's not celiac disease, but I'm probably just delaying the inevitable.

I'll have more questions soon, but I think for now, I have plenty to look at and will be getting used to the idea of not eating wheat.

1

Share this post


Link to post
Share on other sites

HI NST,

Here are some more threads with info. Celiacs have to avoid wheat, rye and barley. They all have very similar proteins in them and all cause reactions.

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.

Don't eat in restaurants

Eat only whole foods not processed foods.

Eat only food you cook yourself, think simple foods, not gourmet meals.

Take probiotics.

Take digestive enzymes.

Avoid dairy.

Avoid sugars and starchy foods.

Avoid alcohol.

Some threads with good info:

FAQ Celiac com

http://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Celiac Newbie Info 101

What's For Breakfast Today?

What Did You Have For Lunch Today?

What Are You Cooking Tonight?

Easy yummy bread in minutes

2

Share this post


Link to post
Share on other sites

Right, no degrees of celiac, it is an autoimmune disease, and the immune system is not very forgiving to enemies.

There are cases where people have no GI symptoms, and they are called silent celiacs. But that doesn't mean the damage isn't being done. Symptoms for celiac can be all over the board, in any organ of the body, not just the gut. That's one of the things that makes it hard to diagnose.

Just to follow up on this in case any other new Celiacs stumble across this post. I saw my blood levels finally (off the charts for the antibodies) and had an endoscope done to assess damage in my small intestine (lots - to quote the gastroenterologist, "years of damage" - lots of flattening). I am, in fact, a silent Celiac and just started my new diet. I kept hoping that maybe I wouldn't have to be as strict as everyone else and would have less damage since I felt fine (in the face of what everyone here posted), but will need to adhere strictly if I want to stay healthy.

What I think will work for me to change my behavior (hard since I feel fine) is to think not of relief from pain, but of prevention of future pain. I may never have developed GI tract pain from gluten, but the diseases and issues that can result from celiac disease are all the kinds of things I want to avoid (and found out it might ease my existing thyroid condition). I have a pretty positive outlook on this now and hope that anyone else who finds themselves in the position of making a drastic life change when they feel fine will understand that it will be difficult, but there will be ways to do the things you love without wheat.

1

Share this post


Link to post
Share on other sites

I'm new to all this as well, but I spoke to a friend who is celiac, and she had no symptoms at all when she got tested (blood tests and the biopsy) and came back positive. Hope that helps. Luke

0

Share this post


Link to post
Share on other sites

Thanks for your stories NST and Onierios, Just in case Raven's post above raises a question on it, DH here often means dermatitis herpetiformis. DH is a skin condition only celiacs get. Not all do but some get it.

NST, there are several people with silent celiac on the forum. They sometimes have trouble determining if they have been eating cross contaminated foods. Sometimes people develop symptoms after they have been gluten-free a while too. So you might notice symptoms popping up or notice symptoms disappearing that you didn't associate with food before.

Anyway, congrats on finding out without any symptoms. That's is not so easy to do. :)

0

Share this post


Link to post
Share on other sites

I was diagnosed in May of 2012 and I am definitely a silent Celiac. No GI symptoms and I felt fine after eating gluten nearly all day, every day. I had been iron deficient for YEARS with no success and had some mild to moderate problems with joints - TMJ, knee pain, etc. Acid reflux was a problem along with bloating and horrible chest gas pains that ended me up in the hospital once with doctor's scratching their heads. I only went to a GI doctor after bad stomach pains that lasted for 3 days. I'm thankful that they tested me for Celiac and I came up positive on the blood work and endoscopy.

Please keep in mind that although your GI system didn't seem to react to gluten prior to going gluten free, you most likely will become more sensitive to it after being gluten free for a while. I've only been gluten free for about 2 1/2 months now and by accident I ingested gluten 3 days ago and I felt it almost immediately. That would have NEVER happened to be before I went gluten free. I was in the bathroom that night with nausea and D and have been feeling pretty fatigued and sore ever since.

Celiac is celiac and it attacks our bodies regardless of what our symptoms present as. Please keep reading the forums and asking questions - there are incredibly knowledgeable people on this site! If you continue reading on here you will learn quick! I know I did! :)

1

Share this post


Link to post
Share on other sites

While there are no degrees of Celiac there can be a "honeymoon" period. After the gut heals some people can eat gluten and experience no symptoms. Howeverconsuming gluten will continue to damage the gut even if you have no symptoms and if you were to start eating gluten again the symptoms will eventually come back. I find, that for me, should I be glutened my immediate symptoms are far less intense than they were two years ago. My gut is finally starting to heal. Does that mean I can ever safely consume gluten? No!! It just means that I have to be extra vigilant to avoid any accidental glutening.

0

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
      102,680
    • Total Posts
      914,400
  • Topics

  • Posts

    • Blood sugar, hunger, celiac
      Thanks for your reply. I'm not sure how much fat I'm having, I will check. That could be contributing. Yup I do know about the link between Type 1 and celiac. But when it was first discovered my blood sugar was high, my insulin was tested and it was high...actually it was double the normal amount. C-peptide was tested too and I don't remember exactly but I think it was slightly high? If I had Type 1 or LADA, wouldn't my insulin be lower? It is strange though how I have none of the risk factors for insulin resistance and/or type 2... And in fact I had been on a super healthy whole food, "anti-candida" diet for several years before my blood sugar suddenly went really wacko!
    • CALL TO ACTION: YOUR INPUT IS REQUESTED BY THE FDA ON GLUTEN-FREE ISSUES
      FDA proposed rule on gluten-free labeling of fermented or hydrolyzed foods: If you haven’t already, please take the time to comment on the rule. The comment period closes February 16. But this is truly a CALL TO ACTION.  Your input is needed. You have a voice, you are an advocate for the gluten-free community. Now is the time to stand up and be heard.  Your voice, your words, can help all of us stay safe when purchasing food labeled gluten-free.  Johnna’s Kitchen posted a sample letter you may find helpful http://injohnnaskitchen.com/2016/01/call-to-action-your-input-is-requested-by-the-fda-on-gluten-free-issues/ It takes almost no time at all to copy & paste Johnna's letter into the FDA comment site & it will help us all.
    • Chipolte New Marinade
      I don't think any of their food was " certified" gluten-free?  
    • "Pre-Celiac" & scared
      Is there anyone else "pre-celiac" and asymptomatic like me who has had long-term success without losing their mind and still enjoying eating out without feeling like you have to stay in a plastic bubble?  This site has been helpful to me these past months.   I don't have it "Yet" and I am scared.  Sorry this is long but I wanted to be thorough: Two years ago I started experiencing GERD (heart burn, pain under my left rib cage, and regurgitation).  After trying probiotics, kambucha, kefir, apple cider vinegar, aloe juice, eliminating chocolate, citrus, tomatoes, spices, cinnamon, mint, alcohol, not eating 3 hours before bed, I was no better. I got an endoscopy/colonoscopy.  The dr found gastritis and esophagitis.  No hernia, infection or ulcer.  He started me on PPI.  I got 99% relief.  After 6 months I decided to go off PPI.  After suffering for 3 months, I went back to dr and back on PPIs for a year.  Because I am young, 39, and the PPIs have side effects, he discussed surgery with me. I went to a specialist. All the tests showed my esophagus was normal but my lower esophageal sphincter was not closing properly.  I was a good candidate and decided on the MUSE, (Endoscopically stapling the esophagus to prevent reflux) When the specialist did his endoscopy (1 year after previous one and before I was on PPIs regularly)  he saw villi damage that looked like textbook Celiac.  HUH?  I don't have ANY symptoms.  No cramps, vomiting, diarrhea, bloating, gas, discomfort, NOTHING.  He took biopsies and the results were "non-specific" perhaps "clinically latent celiac sprue" or a number of other things. So I took blood tests.  The celiac gene test was "susceptible" and I had "high" antibodies, but not positive.  Dr said go gluten-free to prevent  celiac. Did the PPIs cause the villi damage because I couldn't absorb the wheat properly and triggered celiac in me?  It sounds reasonable.   I wonder if now that I have had the MUSE and may be able to stop PPIs, will I be able to digest gluten better? Very interesting.  I plan to call a celiac specialist where I live to discuss this with him. I have not eaten gluten intentionally for 2.5 months now.  It did not help my GERD before the surgery.  Dr said they were unrelated anyway.  I am concerned about CC, breathing in, and accidental ingestion, but since I have no symptoms, I can never tell.  So I take glutenease when I eat out and glutamine powder to try to repair the damage.  How careful should I be since I don't have it "yet"? Amy's gluten-free frozen foods are great, and I read every label at Trader Joe's, eat off the gluten-free menu, corn tortillas @ Mexican, no soy sauce or imitation crab @ sushi, steamed veggies @ Chinese, & gluten-free pasta @ Italian. Member Lisa wrote, "Even though you eat as gluten free as possible, you probably consume close to that amount of gluten due to cross contamination in processed gluten free food and other exposures. ...Eating 100% gluten free is a total improbability. "
      Most people with Celiac can handle 20ppm.  So is that equivalent to breathing in flour?  Having a half a teaspoon of soy sauce by accident in Asian food?  I can live without bread and cookies, but gluten is IN  so many things. Some on this site with Celiac have separate toasters, don't eat out, and don't walk into bakeries while there are others that eat out and eat fries made in shared oil at BK.  Even I haven't done that.  Isn't it dangerous? Thank you for you help!!
    • Pins And Needles
      You sure did nail it! I was too worried it was MS or Lupus or Celiac to be able to really give that option a chance. If anything my guess was low b12. The only obvious things in my diet are Vitamin water and protein bars. If you look at food it's in practically everything in pretty high doses. Going gluten-free uncovered this or made it start. MTHFR gene maybe? Magnesium too low? I haven't taken my multi & am looking up everything I'm eating. Still having the twitches but not near as much in my calves and feet. My arch pain is gone & energy is up a bit. Still twitching though and had some arm and shoulder pain overnight. I read it can be 6 months or longer for nerves to heal.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

    There are no registered users currently online

  • Member Statistics

    • Total Members
      59,706
    • Most Online
      1,763

    Newest Member
    between_spaces
    Joined