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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 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.

Introduction And Questions...
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AfterAll    0

Hi everyone. I am new here. I want to introduce myself and ask some questions.

A little background on me... I was diagnosed with Celiacs at the end of May. I am 30 years old and have 2 children. My stomach has always been sensitive (and I have a hiatal hernia, an ulcer and GERD), but after I had my second son in January (via emergency c-section), I started feeling pretty badly pretty quickly and within a few months got my diagnosis.

It was kind of hard to figure out that there was something going on because a lot of what I was feeling was and is normal post-baby stuff. Some of my symptoms included:

Awful stomach pains and running to the bathroom multiple times after most meals

Hair loss

2 cavities (first ones ever.. not sure if it is related or not)

Bruising easily

Fatigue

Inability to lose weight

Depression (which my OB diagnosed as Post Partum Depression and 3 days later my Gastro said it was the Celiacs)

Joint pain

Since I went gluten-free at the beginning of June, I have been doing pretty well and haven't been "glutened" very many times. I was really hoping to start feeling better, but I am still so tired, I want to cry. I am normally an energetic person who multitasks well and is always on the go, and lately I feel like there is an elephant sitting on my eyelids. As I mentioned, I have a 3 y/o and an 8 month old, so I am sure some of this comes with the territory... I am also a high school teacher and am finishing my second masters.

I realize that I have a lot on my plate, but the level of fatigue that I am feeling just does not match the amount of sleep that I get (between 7-8 hours)... and getting more doesn't seem to help. My joints are also aching most of the time still too. By the weekends, I am a hot mess and I need to nap like one of my kids and I am struggling to stay awake the rest of the day.

Be honest... does this get better? :-/

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psawyer    687

Welcome!

Celiac disease damages your body. Going 100% gluten-free starts the healing process, but it takes time. How long will depend on the amount of damage and your age. The older you are, the longer it typically takes. During the healing process (and even after) you may need nutritional supplements.

Twelve years in, I still take B12 supplements. Fatigue is one symptom of B12 deficiency.

There is a tie between celiac and thyroid issues. Have your thyroid function been checked?

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AfterAll    0

Welcome!

Celiac disease damages your body. Going 100% gluten-free starts the healing process, but it takes time. How long will depend on the amount of damage and your age. The older you are, the longer it typically takes. During the healing process (and even after) you may need nutritional supplements.

Twelve years in, I still take B12 supplements. Fatigue is one symptom of B12 deficiency.

There is a tie between celiac and thyroid issues. Have your thyroid function been checked?

Thanks for responding!

Yes, my thyroid has been tested a few times, and I think it was on the panel when I was tested for Celiacs. I have a follow up with my gastro soon, I will bring it up with him.

It is 8:24pm and my joints are aching and I am struggling to stay awake... I feel like I am 80, not 30.

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shadowicewolf    166

hi!

Cavities are probably from your recent pregnancy. My mom was like you, never had one, then after she had me, she had a couple. Something to do with calcium i think she said?

The stomach problems are pretty much seen with this condition. Joint pain can be too. The rest i have heard of (but not experienced).

What it could be too me it seems like your spread a bit too much. Taking care of two small children, a teacher, and working on a masters on top of recovering from this condition? I certainly couldn't do it.

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AfterAll    0

hi!

Cavities are probably from your recent pregnancy. My mom was like you, never had one, then after she had me, she had a couple. Something to do with calcium i think she said?

The stomach problems are pretty much seen with this condition. Joint pain can be too. The rest i have heard of (but not experienced).

What it could be too me it seems like your spread a bit too much. Taking care of two small children, a teacher, and working on a masters on top of recovering from this condition? I certainly couldn't do it.

I know I have a lot on my plate, no doubt. I will be done with the degree in December, so I need to just keep on truckin'. I just don't know why no matter how sleep I get, it doesn't seem to matter.

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mushroom    1,205

Healing is hard work for your body and puts many stresses on it, including the need for more rest, which it seems like you really do not have a lot of time for at this time. You make ME feel tired thinking of what you are doing. Be patient with yourself and try to relieve some of your load if you can. Is it possible to finish your masters at a later time?

As others have mentioned, you should ask your doctor to test you for nutritional deficiencies which can really drag you down. Since celiac is a disease of malabsorption it is really common for celiacs to be low in things like B12, D, ferritin/iron, folate, potassium, magnesium,, etc., and supplementing these in the right amounts can give you a lot more pep. :)

Don't let your doctor put you off - make sure he does these tests. In the meantime you could buy some sublingual methylcobalamine B12, which bypasses the malabsorbing gut and goes straight into your blood stream. Taking one a day will not do you any harm and it may well give you a boost..

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AfterAll    0

Healing is hard work for your body and puts many stresses on it, including the need for more rest, which it seems like you really do not have a lot of time for at this time. You make ME feel tired thinking of what you are doing. Be patient with yourself and try to relieve some of your load if you can. Is it possible to finish your masters at a later time?

As others have mentioned, you should ask your doctor to test you for nutritional deficiencies which can really drag you down. Since celiac is a disease of malabsorption it is really common for celiacs to be low in things like B12, D, ferritin/iron, folate, potassium, magnesium,, etc., and supplementing these in the right amounts can give you a lot more pep. :)

Don't let your doctor put you off - make sure he does these tests. In the meantime you could buy some sublingual methylcobalamine B12, which bypasses the malabsorbing gut and goes straight into your blood stream. Taking one a day will not do you any harm and it may well give you a boost..

Thanks for the tips! I am so close to being done with the masters so I am not willing to put it off right now.

I am seeing my gastro soon... I will def ask him to do those tests so I can hopefully fix this exhaustion.

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MitziG    94

The aching joints seems familiar. For me, and a lot of us here, casein (protein in milk) will cause a reaction. It is similar in structure to gliadin and for a lot of us, our body can't tell the difference. I had to ditch casein too to really kick the fatigue in the butt. And one of the first things that I notice when I get any, is aching joints. Mmy son is the same way. If your iron, vit D and B12 are all checking out good, you may want to try being gluten and casein free for a few weeks to see if there is improvement.

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AfterAll    0

The aching joints seems familiar. For me, and a lot of us here, casein (protein in milk) will cause a reaction. It is similar in structure to gliadin and for a lot of us, our body can't tell the difference. I had to ditch casein too to really kick the fatigue in the butt. And one of the first things that I notice when I get any, is aching joints. Mmy son is the same way. If your iron, vit D and B12 are all checking out good, you may want to try being gluten and casein free for a few weeks to see if there is improvement.

I never considered that... great tips!

I drink lactaid free milk, but I do still eat dairy, so I am sure that this is in my system. This is def worth a bit of research for me, thanks!

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nvsmom    332

I too was disappointed when my fatigue didn't lift after going gluten-free and then I found out i have hashimoto's hypothyroidism so I think that is responsible for my symptoms. Did the GP test for TPOAb or just TSH? TPOAb would indicate your thyroid is under attack even if your TSH is normal or even marginally elevated.

Connective tissue AI's can also cause those symptoms; UCTD, Lupus, and Sjorgen's could be at the root of it; and thrombocytopenia is when platelets are under autoimmune attack so you become anemic and bruise easily. Perhaps google some of those and see if anything jumps out at you.

I hope you feel better.

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AfterAll    0

I too was disappointed when my fatigue didn't lift after going gluten-free and then I found out i have hashimoto's hypothyroidism so I think that is responsible for my symptoms. Did the GP test for TPOAb or just TSH? TPOAb would indicate your thyroid is under attack even if your TSH is normal or even marginally elevated.

Connective tissue AI's can also cause those symptoms; UCTD, Lupus, and Sjorgen's could be at the root of it; and thrombocytopenia is when platelets are under autoimmune attack so you become anemic and bruise easily. Perhaps google some of those and see if anything jumps out at you.

I hope you feel better.

Thanks! I have no idea what was tested for and what wasn't. Just to give you a picture of what happened... I went in for testing, went back to work from maternity leave the following week, received a call from my doctor WHILE at work several days later explaining what was wrong with me (food allergies, Celiacs, and an ulcer with H. Pylori).

This was late May and I have not been back to see my doctor since. My friend's husband died a few days after I was diagnosed and I got completely sidetracked, then we redid and renovated the entire kitchen. Annnnd now I am back at work again. I have cancelled 2 appointments so far due to childcare conflicts and I made another one for about 3 weeks from now. I have a lot of questions for him when I do finally get my butt in there.

I will def google some of the things you mentioned and see if I can get some answers.

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GottaSki    459

Considering your hectic schedule since diagnosis along with very little follow up care - I am curious if you are aware of safe gluten-free practices - is it possible you are still ingesting small amounts of gluten?

When gluten is remove the body often reacts strongly to small particles of gluten - shared toaster, colander, can opener, cutting board, scratched non-stick pans can be a problem, etc. Do you eat out? gluten-free menus are not always safe for Celiac Disease due to cross contamination in the preparation - even if all the ingredients are gluten-free.

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flowerqueen    26

Like other comments on here, I think you have a lot going on and it could be a combination of all the things you mentioned. After I had my children, for months after I lost a lot if hair. Having said that, years later I did find I had an under active thyroid (which can cause the symptoms you have described - there's a very long list!) I also developed diabetes. Make sure you get all the relevant tests for thyroid (auto immune diseases have a habit of coming in 2's or 3's). As well as looking after young children and being a teacher I'm not surprised you are tired which can add stress to your problems and that alone can cause a long list of symptoms as you will no doubt know. With regard to Coeliac symptoms, it does take a while to settle down, as I know only too well. I am still having problems with symptoms nearly 11 months into my gluten free diet, (as I had undiagnosed coeliac disease for a long time, I can't expect an over night recovery) and I still cannot tolerate dairy products. Try keeping a food diary as well as a list of symptoms after each meal - I know it's a hassle when you have so much going on, but playing detective might just unearth something you had not considered. Good luck!

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AfterAll    0

Considering your hectic schedule since diagnosis along with very little follow up care - I am curious if you are aware of safe gluten-free practices - is it possible you are still ingesting small amounts of gluten?

When gluten is remove the body often reacts strongly to small particles of gluten - shared toaster, colander, can opener, cutting board, scratched non-stick pans can be a problem, etc. Do you eat out? gluten-free menus are not always safe for Celiac Disease due to cross contamination in the preparation - even if all the ingredients are gluten-free.

I followed up with a dietician after I got diagnosed, so I did have some follow up care- but not a lot. I have been really careful since finding out. Of course it is always possible to get cross contaminated, BUT considering how ill I got the 2 times I ate the wrong foods (accidentally), I would think that my stomach would be reacting as well rather than just fatigue and joint pain. WDYT?

I do eat out, but again, I have been really careful. I know the possibility is always there since I am not the one making the foods....

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AfterAll    0

Like other comments on here, I think you have a lot going on and it could be a combination of all the things you mentioned. After I had my children, for months after I lost a lot if hair. Having said that, years later I did find I had an under active thyroid (which can cause the symptoms you have described - there's a very long list!) I also developed diabetes. Make sure you get all the relevant tests for thyroid (auto immune diseases have a habit of coming in 2's or 3's). As well as looking after young children and being a teacher I'm not surprised you are tired which can add stress to your problems and that alone can cause a long list of symptoms as you will no doubt know. With regard to Coeliac symptoms, it does take a while to settle down, as I know only too well. I am still having problems with symptoms nearly 11 months into my gluten free diet, (as I had undiagnosed coeliac disease for a long time, I can't expect an over night recovery) and I still cannot tolerate dairy products. Try keeping a food diary as well as a list of symptoms after each meal - I know it's a hassle when you have so much going on, but playing detective might just unearth something you had not considered. Good luck!

Thank you!

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