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      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.

Celiac With No Perceptible Symptoms
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14 posts in this topic

Hello all,

 

I have been diagnosed thru biopsy as celiac.  I have symptoms that I can attribute to being celiac.  The only reason I was sent to a GI doc was fatigue and what a surprise it was to both me and the GI doc that I AM celiac!  Unfortunately, I also have other chronic diseases that are notorious for causing fatigue (Addison's, Sjogren's).  I've had those 2 diseases for 10 years and have suffered major fatigue for 10 years so who's to know that celiac is causing it? 

 

So, I'm wondering if anyone else here seems to have no symptoms.  Since I experience nothing different between eating gluten or not, I find it difficult to motivate myself to eat gluten-free.  I've not had a satisfactory answer from any doc upon asking what do I gain by dealing with this difficult way of eating.  What will happen if I don't go gluten-free? 

 

Can anyone here offer some insights?

 

Thanks,

Suzanne

 

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I didn't have any abdominal symptoms when I went for a routine colonoscopy (yeah, over 50!).  GI doc looked at my chart and saw that I had been anemic and had Hashimoto's Thryoiditis (treated).  He guessed that I had celiac disease.    I tested positive on both the blood test and biopsy to my surprise.  

 

A few months later, I fractured my vertebrae doing NOTHING.  I had a bone scan and was diagnosed with  osteopenia and probably osteoporosis (scan just covered hip and lower back).   That had a huge impact on my otherwise very active life.  

 

So, you can continue to eat gluten and develop other autoimmune disorders, become anemic that could cause heart problems or develop osteoporosis.  And do you really want to feel tired for the rest of your life?

 

That said, welcome to the board and join the gluten free gang!  There are tons of tips and even a newbie thread.  

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You have intestinal damage. Maybe you are lucky and it isn't affecting you yet. If you continue to eat gluten, you will get more damage until it will affect you. Your chances of a few GI cancers are increased with untreated celiac. Osteoporosis is a common complication. Miscarriages for women. Malabsorption of vitamins and minerals which can then result in all kinds of issues - fatigue, anemia, osteoporosis, etc. etc.

I have seen many people who think they have no symptoms report that after a few months gluten-free, things they hadn't thought about improved. Maybe it will help your fatigue - at least only 2 illnesses will be making you tired instead of 3. Other things may become better. Less gas. Happier mood. More regular BMs.......

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Sjogren's will not necessarily cause fatigue by itself, Controlled Celiac will not cause fatigue by itself.  Stopping the autoimmune reaction in your body by committing to a gluten free diet will very much lessen the fatigue you feel.  Of course, the effects of Addison's Disease will always be with you.  But giving your body the best possible environment to be healthy will you more energy.  A note on your Addison's Disease.  My Husband also has Addison's so I truly understand the Disease and everything that goes with it.  He takes Adderall to help with fatigue when he needs it.  Like him, you may also experience mood problems.  He also takes a mood stabilizer to keep things as smooth as possible. 

 

Colleen

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Insomnia, thinning hair, swelling feet, psoriasis, brain fog, frequent and painful hiccups, chronic grumpiness. These were all symptoms that I had that I never would have attributed to celiac. and all of them cleared up when I went gluten-free.

 

But there is another reason to avoid gluten besides the fact that you will feel better, and besides all of the terrible things that can happen to you if you keep eating it. Go to the Dermatitis Herpetiformis section here and read a bit. Look at the pictures people have posted and read about their suffering. Be aware that this terrible complication, also called "the suicide rash" can happen to any celiac at any time if they eat gluten. I'm not talking distant future. I'm talking about any time, maybe even tomorrow.

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Hello all,

 

I have been diagnosed thru biopsy as celiac.  I have symptoms that I can attribute to being celiac.  The only reason I was sent to a GI doc was fatigue and what a surprise it was to both me and the GI doc that I AM celiac!  Unfortunately, I also have other chronic diseases that are notorious for causing fatigue (Addison's, Sjogren's).  I've had those 2 diseases for 10 years and have suffered major fatigue for 10 years so who's to know that celiac is causing it? 

 

So, I'm wondering if anyone else here seems to have no symptoms.  Since I experience nothing different between eating gluten or not, I find it difficult to motivate myself to eat gluten-free.  I've not had a satisfactory answer from any doc upon asking what do I gain by dealing with this difficult way of eating.  What will happen if I don't go gluten-free? 

 

Can anyone here offer some insights?

 

Thanks,

Suzanne

Suzanne......both Addison's and especially Sjogren's are 2 of the other AI diseases strongly linked to Celiac so those are 2 very large clues to the underlying problem.  I also have Sjogren's.  I developed 3 of my other AI diseases long before I was diagnosed with celiac.  So, it could be that you have had celiac for a very long time, causing you to trip with the other 2.  Many people have little to no symptoms when diagnosed with celiac...it is not that uncommon.  The fatigue I had was greatly improved by going and staying strictly gluten-free so that is a good incentive to stay gluten-free.

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ACK!  My kinda long post just disappeared-got a message I had timed out.  Anyway..I'll try again.

 

Thanks everyone!  You have told me things that no dietitian or physician ever did.  No one gave me any reason to change the way I eat except to stop the GI symptoms, which I didn't have.  Even my GI doc said I could do what I wanted when I asked why I should follow the gluten free diet.  No facts, nothing.

 

Colleen~  it is so rare I come across anyone with Addison's disease!  I used to frequent a message board for Addison's but it has vanished.  Perhaps you or your husband know of a good one?  I miss having people to relate to with that awful disease.

 

Gemini~ Sjogren's is the disease I deal with pretty much 24/7.  My eyes are so dry I think they will spontaneously combust!  Could be worse for me, though.

 

Thanks again, all.  Now I have much to learn about eating in a new way.

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Caniac,

 

My husband frequents 4 groups on Facebook.  Doctors really don't understand the issues Addisonians deal with in real life.  I will PM you the group names so as to not divert from the topic of this thread.

 

Keep on learning about Celiac and the life long commitment to the Gluten Free Diet.  Soon you will be an old pro.

 

Good luck,

 

Colleen

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caniac.....may I suggest trying a prescription for Restasis eyedrops?  I use them for my severe dry eye and they have been a God send.  They work very well in many people.

I also use Biotene mouthwash for dry mouth and again, it works very well at night before you go to bed.  It contains enzymes that are present in the saliva you don't have enough of and helps to keep your teeth from too much decay.  :)

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caniac.....may I suggest trying a prescription for Restasis eyedrops?  I use them for my severe dry eye and they have been a God send.  They work very well in many people.

I also use Biotene mouthwash for dry mouth and again, it works very well at night before you go to bed.  It contains enzymes that are present in the saliva you don't have enough of and helps to keep your teeth from too much decay.  :)

Hi Gemini,

I have been using Biotene for some time (toothpaste and mouthwash)  Couldn't get by without them!

 

Restasis I can take or leave.  I'm not certain it does much for me though I stick with it.  I also use moisturizing eyedrops all day long and often through the night. 

 

Thanks for the words of advice!  I'll take all advice!

 

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Sounds like you and I are on the same path!  I freak out if I don't have Biotene mouthwash......not only does it have a nice flavor, it really does help with mouth dryness.  As for the Restasis, it has made a HUGE difference for me.

It does take a while to really kick in, though.  I hope you find the same relief I did.  Not to say my eyes are great but they are much happier on Restasis.  I also use moisturizing drops.  I should have bought stock in the company........ ^_^

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Hello all,

I have been diagnosed thru biopsy as celiac. I have symptoms that I can attribute to being celiac. The only reason I was sent to a GI doc was fatigue and what a surprise it was to both me and the GI doc that I AM celiac! Unfortunately, I also have other chronic diseases that are notorious for causing fatigue (Addison's, Sjogren's). I've had those 2 diseases for 10 years and have suffered major fatigue for 10 years so who's to know that celiac is causing it?

So, I'm wondering if anyone else here seems to have no symptoms. Since I experience nothing different between eating gluten or not, I find it difficult to motivate myself to eat gluten-free. I've not had a satisfactory answer from any doc upon asking what do I gain by dealing with this difficult way of eating. What will happen if I don't go gluten-free?

Can anyone here offer some insights?

Thanks,

Suzanne

dear Susan, my mother had all 3 of the same diseases you have & also chose to eat her glutens. For 10 years she continued to go downhill, having blood clotting problems which caused terrible bruising, she used to tease my dad beat her up. She had burning feet syndrome where she couldn't walk & her feet felt like they were on fire, they would swell & she spent hours daily with them in ice water. She couldn't go in the sun for any period of time without having problems. She ended up with lupus, amongst other diseases I can't remember all of them, & finally died from her body being malnutritioned, over time it quit absorbing nutrients from her food. I watched her die slowly & painfully in a hospital bed her last 9 months. I have since been told I have celiacs, & like it or not I am sticking to a strict gluten-free diet because I am NOT going to die like my mother, it was horrible to watch. It is your choice but hopefully my devastating experience can help you make the decision that's right for you, besides you will physically feel better once you start gluten-free diet. After a while I got used to it & now it doesn't bother me to be gluten-free! Take care,& good luck, Rachelle
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Hi Suzanne,

I think your case is very similar to mine.  I just happened to find out about my celiac when they were looking at bad GERD and gallbladder, and around the same time I found out I have a disease where I lack part of my immune system, lupus, and fibromyalgia.  So when I was told I have celiac disease, go gluten free and good luck!  I was like... really people?  Why do I need to do this?  I didn't have celiac symptoms other than low iron (which is better now), and of course with all the health problems it is hard to tell what is causing what.  

 

So I have been living gluten-free since January, and since then I have also gotten control of my other ailments and overall feel better, so think of taking care of your celiac as a pillar of your overall health package.  Now, if I eat gluten, I get symptoms, when I used to not.  Not as bad as some people, but enough to make me really uncomfortable and reinforce the eating gluten-free thing.  My doctors for my immune stuff and autoimmune stuff always ask me if I am still eating gluten free and stress the importance of taking care of everything no matter how little it seems, because with autoimmune conditions it is important to maintain yourself so you don't have a flare up, like eating right and avoiding stress, etc.

 

I am so glad you were able to get some good information from this forum, these people are great :)

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Suzanne  - Rachelle is right!  It is worth looking at family history for autoimmune clues, particularly if like me and people posting here you have no obvious celiac symptoms. My brother died of lymphoma due to celiac which was diagnosed after 14 years of symptoms - anemia + abdominal. Our mother suffered from rickets as a child and thyrotoxicosis. She always had cold hands and feet sometimes progressing to chilblains, and several years of dementia. Her mother died aged 52 of diabetes and her maternal grandmother had two sibs who died in childhood. If it is unexplained it may well be autoimmune, and if it is autoimmune it may be related to celiac!

           

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