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Introduction And Questions...
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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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    • Mnoosh,    Can you give us a link to the article you read about the increased risk after being diagnosed and maintaining a strict gluten-free diet??       IMO,   You are over reacting to a misprint or most likely a misread article.
    • Yes!  With dairy, celiacs can often have a temorary lactose intolerance due to damaged intestinal villi (where the enzymes normally are released to digest lactose).  Of course you could be naturally lactose intolerant based on race or age.  It is best to stick to a whole foods diet while you are healing.  Really, is ice cream or potato chips going to provide you with nutritional value?  Stick with naturally gluten free foods like meat, fish, fats,  veggies (even those with carbs like sweet potatoes or winter squash) and fruit.  Avoid that processed junk as you may react to the additives right now.  Later, you can add back in dairy (test) and other foods you miss and crave.   Good luck!  
    • Take a deep breath and calm down!    The incidence of cancer with Celiac Disease is rare.......it can happen but the vast majority of people never have that experience.  You may have somewhat enlarged lymph nodes due to inflammation from undiagnosed Celiac but that will all calm down and go away once you get going on the diet.  Believe me, there are many of us that have things happen during the diagnosis and early recovery period and everything turned out just fine.  There is an elevated risk for some cancers with Celiac but that risk goes back to that of the general population after a couple of years on the gluten-free diet. I cannot remember the exact time frame but it is somewhere between 2-4 years, I think.  So many of us went years without a diagnosis and when it was all figured out, we have gone on to be healthy with little complications.  Really...do  not worry about this.  Concentrate on learning all the ins and outs of this disease and how to live gluten free happily.  We are here to help you and guess what? The diet is not as bad as some make it out to be. Many things can be made gluten free and are every bit as good as their gluten counterparts. The diet may not be convenient but it is not hard. I would not lie to you!   
    • Well....one common symptom that most celiacs have when they are diagnosed (or undiagnosed) is anxiety.  So, there is a risk of cancers, but science has demonstrated that that risk goes down on a gluten free diet (if you have celiac disease).  In goes down to the same risk as those without celiac disease.   I kind of was a basket case.  I drive my family a bit crazy because I was anxious.  I felt a bit stupid too.  I guess I had a little brain fog going on too.  All that resolved after I healed. Welcome to the fourum.  Read our Newbie 101 thread under "Coping" (pinned at the top of the page) and learn about hidden sources of gluten and cross contamination.  I think most of us do not worry about cancer. We mourn the freedom to eat anything anywhere!   I did not have swollen lymph nodes, but I am sure others have and they did not have cancer.  Hopefully, they will chime in and set your mind at ease.  If not, you can search for "lymph nodes" at the top of the page (little magnifying glass).  There are lots of members with the same issue!  
    • I was recently diagnosed as having celiac and to be honest the part I'm having the most trouble with isn't the change in food or lifestyle. I'm really upset about what I've read about the risk of cancer increasing with celiac disease. I think this is playing into my fears because I currently have lymph nodes all over my body-my Doctor says they are not considered swollen or concerning, but I don't usually feel nodes. The lymph nodes and horrible diarrhea for the last 3 weeks were what got me into the the doctor for lab work. My blood work came great so I'm wondering if anyone else experienced lymph nodes reacting when they found out they were celiac? Also how do you deal with anxiety surrounding the increased risk of cancer? Thanks!
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