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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.

Still Lethargic All The Time
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9 posts in this topic

I was diagnosed with Coeliac Disease officially in October last year. I have always gotten really tired but thought it would ease up shortly after going on a Gluten free diet.

 

My initial blood test showed my ferratin levels were only a 3 and my haemaglobin had dropped quite considerably. My gastro sent me off for an iron infusion which sent it up to 900. Since it has been dropping extremely quick but i am assuming that is quite normal as it got so high. My bloods are still normal(since end of dec) except i noticed my platelets have been dropping a fair amount each month. Im due for another blood test this month.

 

Basically i am really struggling to cope. I STILL get night sweats and i wake up every morning feeling awful and sometimes achy. I start to feel a little better as i get myself moving BUT once 10am hits at work, its like i hit a brick wall. I find it really hard to get up in the morning and organise my breakfast and lunch(which is quite necessary as you probably know) I finish work at 5, get home at 6:30 and im in bed by 7.30 - 8.30 at the latest then sleep straight through to 6:30. If i had time i would be napping all afternoon. It is starting to effect my ability to work and my social life. I cannot do anything after work unless i really push myself. I saw my GP in Jan and he said its fairly normal and to keep all my multivitamins up(even though my levels are fine)

 

Is it still considered normal to be this tired almost 5 months of being on a gluten free diet? I just dont understand what is causing it. :(

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Hi Ashy,

 

Welcome to the forum! :)

 

There are several long threads on night sweats on the forum.  You might find them interesting to read.  Try searching the forum for night sweats and looking for hits with lots of posts.  I think they can be a reaction to inflammation in the body, possibly in the gut.  Inflammation could be from continued autoimmune reactions that haven't tapered off yet for some reason.  It may be that your immune system is going to put up a good fight for a while longer before it relaxes.  It could also be that there is a gluten sneaking into your diet somehow.  Taking a good long look at everything you eat each day is a good start toward finding hidden gluten.  If it isn't something obvious then the next step is to start eliminating things that "might" have gluten even though they don't indicate it on the label.  Vitamin pills, medicines, teas, drinks and anything that you consume need to be verified or better yet eliminated for a couple weeks to see if it makes a difference..

 

Another possible cause of fatigue is hypo-thyroid.  Hashimoto's thyroiditis can cause inflammation in the thyroid gland (throat) and that might cause fatigue and night sweats.

 

A whole foods diet is a great way to troubleshoot food problems.

 

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Did you check for more food intolerances?

Did you try pancreatic enzymes and probiotics?

Do you read every label?

Do you make your food from scratch?

 

I know it is all hard when you're tired.  Please keep up.  My head cleared around the 6 month.  It could have been time, or it could have been new suppliments, or rotational diet plan.  It seemed to me about the 6 month my body really started changing fast.

 

I hope you will have a clear mind soon.  You are moving, even if it doesn't feel like it and even if it is slow and bumpy.

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Hi Ashy,

 

Welcome to the forum! :)

 

There are several long threads on night sweats on the forum.  You might find them interesting to read.  Try searching the forum for night sweats and looking for hits with lots of posts.  I think they can be a reaction to inflammation in the body, possibly in the gut.  Inflammation could be from continued autoimmune reactions that haven't tapered off yet for some reason.  It may be that your immune system is going to put up a good fight for a while longer before it relaxes.  It could also be that there is a gluten sneaking into your diet somehow.  Taking a good long look at everything you eat each day is a good start toward finding hidden gluten.  If it isn't something obvious then the next step is to start eliminating things that "might" have gluten even though they don't indicate it on the label.  Vitamin pills, medicines, teas, drinks and anything that you consume need to be verified or better yet eliminated for a couple weeks to see if it makes a difference..

 

Another possible cause of fatigue is hypo-thyroid.  Hashimoto's thyroiditis can cause inflammation in the thyroid gland (throat) and that might cause fatigue and night sweats.

 

A whole foods diet is a great way to troubleshoot food problems.

 

 

Thanks for the welcome :) Its nice to know i can come somewhere that people will understand. Not even my Gp seems the understand. He tells me i will get the ocasional bloating and thats about it. When i try and tell him my symptoms he doesnt even seem to acknowledge them.. night sweats... aching joint.. depression.. and in the past month it seems to have calmed down but i used to get real odd experiences. My vision would go a little funny and it felt like i was dizzy or something. I would even get it when lying in bed, so im assuming it was all part of it. He made sure he tested my thyroid and it all came back normal.

 

I have had one particular poisoning(gluten) and that was just a few days after christmas. Most horrific night i have experienced so far. I guess the more i go without gluten, the more sensitive i get so at the moment im very careful with my labels and my parents have decided to go gluten free as well except for the occasional toast in the morning here and there. I went through the pantry with my mum and got rid of every sauce we had containing gluten and replaced them with gluten-free options. Pretty much everything i eat is prepared at home or bought from the supermarker labelled gluten free. I very rarely have take away or go out for dinner anymore :(

 

I was meaning to post in this forum many months ago as obviously when first being diagnosed it is so hard. I actually ended up losing my job in September last year while i was in the process of being diagnosed due to not working effectively. I was just never switched on, i couldnt concentrate at all... I was already feeling pretty depressed and unhappy but this just made me spiral more. I would get angry at minor things including my mum for getting the wrong type of mushrooms who of anyone has been the most supportive and amazing person i knew it was wrong and it broke my heart. I didnt know where this anger came from. I ended up finding a new job 2 months later but it was SO hard adjusting to a completely new lifestyle. The stress caused me to break down multiple times usually at midnight when everyone was asleep. I think i scared the hell out of my parents. It ended up landing me in emergency due to heart palpitations.. which i figured was just stress. A new job plus getting up to prepare my foods every day and travelling an hour to get to and from work and it just made things worse, but i am so glad i now know i am on the road to recovery and hopefully i wont even know myself soon. Like so many people tell me. Turns out this new job was a blessing but i just cant handle all the fatigue. I think i just really need to pull up my socks and try be a bit more positive. I tell you what though.. coeliac disease certainly aint a walk in the park as i am experiencing... like some people seem to think. So glad to know i can come to a place where im not the only one.

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Yep, celiac can be quite a challenge Ashy.  It takes time to get used to eating "right" and learning things to avoid.  But it does happen and it gets easier when you after are used to it.  Kind of like  a walk in the park on a sunny day in spring! :D  we had a long thread about anger issues and celiac a while back.  Quite a few people reported they had unexplained anger or emotional reactions they didn't expect.  Uncharacteristic emotional reactions that is.  Celiac can affect the brain, obviously as it can cause gluten ataxia.  So it's no surprise that it can affect people's emotional estate to me anyhow.  Heck, I had unexpected anger issues for a while myself.

 

That's great that your mom is helping you with the gluten-free diet.  Sounds like she is going gluten-free also, at least at home right?  That should simplify things some.  I don't know if you have pets, but they are another possible source of cc.  But there are gluten-free pet foods available too.  That's the issue with them, their food and how they like to spread it around and share it.

 

It's easy for us to be aware of gluten in foods but people who don't live with celiac tend not to think of gluten at all.  So it can help to be patient with the gluten eaters of the world as they just don't know any better.  Sometimes we have to be very patient. :)

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Hi, I too was diagnosed in October, I'm still not where I want to be energy- and stomachwise. So you're not the only one struggling with this. But I really can't say what's normal and what's not. Maybe you should push for further assessment just to be on the safe side.

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To me it sounds like you're struggling with secondary intolerances. Many people with Celiac are intolerant to other foods that are traditionally considered gluten free. I personally struggled with this--after being on a gluten-free diet for only a month, my symptoms returned. You may be intolerant of all grains the way I am. A small amount of any grains will keep me up at night, make me tired, anxious/depressed, bloated, etc. I'd recommend looking into an elimination diet to narrow down which foods are causing the problem. Cross-contamination may also be an issue.

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Ok so i started by seeing my GP and having some more tests done. I have looked at the results myself but have not seen my GP as yet... everything seems to look ok except for my Thyroid.. It seems to have dropped from an average of 1.8 down to 0.7 normal range being 0.5 - 5.0 within a few months. Do you think this could have anything to do with my energy levels? My family and i have decided to start strict paleo again starting next week. Ive been home by myself for the past two weeks and have been worse than ever. I have had absolutely no energy to get up.. i havent been making my breakfast or my lunch(i work at a hospital so they are very stricts with what they advertise as gluten-free which is good) so i have been buying it(its usually a curry or salad) and for breakfast ive been eating a piece of gluten free bread. All the fresh food in my fridge is starting to go off and i feel awful as my dear mum made sure it was stocked so i could eat well but i havent had any energy to make any salads or veges.. or cook any meats or buy anything. Then for dinner i usually have a few crackers, piece of fruit or gluten-free bread so i can go straight to bed. The house is starting to become a complete mess and im not coping by myself. Yesterday I managed to fry up a steak which i could only eat half of. Im hoping when im on this no grain diet i can get some of my energy back.

My doctor has also suggested that i cut my hours back and try and exercise more. Im currently booked in for pt training at 7am every Monday which for the past month i have had to keep cancelling, but i dont think i can cut back on my work as they really need me full time.

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Did you get tested for any other vitamin problems than iron? B vitamins, all of them, are essential for energy. Lack of B6 can cause night sweats specifically. B12 is another common one that they probably tested for though.

 

If you collapse at work you're no help to them either. I don't see how excersising will give you more energy at this point, it will just make things harder for you. Mild things like short walks and stretches are very helpful for a sedentary job, but I can't think of a single person who sits still for long in a hospital.

 

I would like to think the hospital's gluten free food is safe, but you never know. I'd be worried about curried anything, as I have a hard time finding any sort of mixed spice that claims it's gluten free. The hospital might be going only by ingredients on labels.

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