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Degrees Of Celiac?


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#1 nst

 
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Posted 21 June 2012 - 11:44 AM

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
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#2 kareng

 
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Posted 21 June 2012 - 11:52 AM

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.curecelia...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.celiacdis...nts/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.mayoclini...ments-and-drugs
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#3 ravenwoodglass

 
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Posted 21 June 2012 - 12:26 PM

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.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#4 Raven815

 
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Posted 21 June 2012 - 01:34 PM

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 :)
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#5 Raven815

 
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Posted 21 June 2012 - 01:38 PM

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)
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#6 GFinDC

 
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Posted 21 June 2012 - 07:14 PM

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.
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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#7 nst

 
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Posted 21 June 2012 - 08:27 PM

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.
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#8 GFinDC

 
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Posted 22 June 2012 - 04:02 AM

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.co...celiac-disease/

Celiac Newbie Info 101
http://www.celiac.co...ewbie-info-101/

What's For Breakfast Today?
http://www.celiac.co...180#entry726053

What Did You Have For Lunch Today?
http://www.celiac.co...or-lunch-today/

What Are You Cooking Tonight?
http://www.celiac.co...ooking-tonight/

Easy yummy bread in minutes
http://www.celiac.co...ead-in-minutes/
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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#9 nst

 
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Posted 11 July 2012 - 04:39 PM

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.
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#10 Oneiros

 
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Posted 11 July 2012 - 10:16 PM

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
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#11 GFinDC

 
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Posted 12 July 2012 - 01:56 PM

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. :)
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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#12 LauraB0927

 
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Posted 13 July 2012 - 05:58 PM

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! :)
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"Dark and difficult times lie ahead ahead - soon we must all face the choice, to do what is right, or what is easy..." - Albus Dumbledore (Harry Potter)

Diagnosed Celiac in May 2012 by TTG level and endoscopy
Acid reflux/GERD (stopped since eating gluten-free)
Syncope
Raynaud's Syndrome
Iron Deficient

#13 cap6

 
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Posted 16 July 2012 - 05:37 PM

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.
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