Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Is This Truly Normal?
0

24 posts in this topic

Week 5 of being gluten free (or maybe 6). Undiagnosed for probably 15 years. Pretty bad fatigue the last year and a half. Since going gluten free, the fatigue has been taken to a whole new level that I cannot even fathom. Example: last night, I couldn't fold my laundry I was so tired and lifeless. I've gained 10 lbs since going gluten free - my diet consists of chicken, turkey, fresh fruits and veggies, and nuts. Had blood tests run by my idiot doctor to see if I'm deficient on folic acid, b12 and ran one thyroid test. All came back ok. Is this really normal? Most days of the week, I can hardly function I'm so tired. I'm 29 years old and used to be extremely active, now I can't even force myself to go for a walk. :( I go to Italy in a month and would really like to not only have energy, but drop this stupid weight that I've gained!

0

Share this post


Link to post
Share on other sites


Ads by Google:
my diet consists of chicken, turkey, fresh fruits and veggies, and nuts.

What form of dietary fats are you consuming, and where are you getting your carbohydrates from ?

0

Share this post


Link to post
Share on other sites

Are you anemic? Low iron has caused severe fatigue in my husband who has celiac

0

Share this post


Link to post
Share on other sites

My energy never improved either but it turns out I'm hypothyroid too (possible other AI). Perhaps get your TSH and T4 levels checked.

Best wishes. I hope you feel better soon.

0

Share this post


Link to post
Share on other sites

What form of dietary fats are you consuming, and where are you getting your carbohydrates from ?

Carbs come from the fruits and veggies, sweet potatoes, ect. Never been one for a lot of bread and pasta, always sits too heavy for me.

0

Share this post


Link to post
Share on other sites




Are you anemic? Low iron has caused severe fatigue in my husband who has celiac

I have been anemic before, but when I mentioned my dumb doctors, it was because they didn't bother to check my iron levels! I'll be going somewhere else to have that done...

0

Share this post


Link to post
Share on other sites

My energy never improved either but it turns out I'm hypothyroid too (possible other AI). Perhaps get your TSH and T4 levels checked.

Best wishes. I hope you feel better soon.

They only checked my TSH which is what worries me, everything I read says more than that needs to be looked at. I feel like my doctor is leaving me hanging by not doing a better job to try and make me feel better!

0

Share this post


Link to post
Share on other sites

I feel similar, tired most of the time. I've been taking notes from all over the forums about what specific tests to request, and I made an appt for next week with my primary doc, who has been very helpful. My gastro diagnosed me, but when I asked him about supplements, he said "No, just go relax and get better". That's not enough of an answer for me. I'm a mom of three kids, I can't just relax and sleep at all hours.

0

Share this post


Link to post
Share on other sites

I feel similar, tired most of the time. I've been taking notes from all over the forums about what specific tests to request, and I made an appt for next week with my primary doc, who has been very helpful. My gastro diagnosed me, but when I asked him about supplements, he said "No, just go relax and get better". That's not enough of an answer for me. I'm a mom of three kids, I can't just relax and sleep at all hours.

I look forward to hearing how your appt goes, mine have all been a complete joke! Relax and get better...don't we all wish it was that easy ;)

0

Share this post


Link to post
Share on other sites

I look forward to hearing how your appt goes, mine have all been a complete joke! Relax and get better...don't we all wish it was that easy ;)

Yeah, that'd be nice! My PCP has been great, when I was in pain, he thought it was my gall bladder initially, and continued to send me for testing when they were not finding an answer. My gastro zeroed right in on celiac, so I am grateful for that, especially hearing so many horror stories on the forum. However, I would have liked more follow up and advice. I'll see him again in the spring, but that is too long of a wait for me.

0

Share this post


Link to post
Share on other sites

My gastro diagnosed me, but when I asked him about supplements, he said "No, just go relax and get better". That's not enough of an answer for me. I'm a mom of three kids, I can't just relax and sleep at all hours.

At diagnosis my Celiac Doctor spent one very long appointment going over all the supplements I should be taking until my body could absorb nutrients properly.

You are correct to not accept the answer you received with regard to supplements. Get your nutrients checked and start supplementing where you are deficient. If you are not already, start taking daily probiotic as well.

Good Luck to you :)

0

Share this post


Link to post
Share on other sites

At diagnosis my Celiac Doctor spent one very long appointment going over all the supplements I should be taking until my body could absorb nutrients properly.

You are correct to not accept the answer you received with regard to supplements. Get your nutrients checked and start supplementing where you are deficient. If you are not already, start taking daily probiotic as well.

Good Luck to you :)

Thanks :) I have a little pile of supplements I have been taking, but I definitly want to zero in on specifics. I keep forgetting about the probiotic, got to add that! I used to take them when I had infections that would not heal. Celiac is just so darn fun, isn't it?

0

Share this post


Link to post
Share on other sites

Thanks :) I have a little pile of supplements I have been taking, but I definitly want to zero in on specifics. I keep forgetting about the probiotic, got to add that! I used to take them when I had infections that would not heal. Celiac is just so darn fun, isn't it?

Fun, fun, fun ;)

I stopped taking probiotics at about 6 months gluten-free because I thought they weren't working and were quite expensive - I regret it as I ended up with subsequent severe food intolerance that can't be absolutely linked to bacterial overgrowth - yet very likely that continued probiotics could have helped. They are worth every penny.

0

Share this post


Link to post
Share on other sites

Fun, fun, fun ;)

I stopped taking probiotics at about 6 months gluten-free because I thought they weren't working and were quite expensive - I regret it as I ended up with subsequent severe food intolerance that can't be absolutely linked to bacterial overgrowth - yet very likely that continued probiotics could have helped. They are worth every penny.

I'm in a bit of sticker shock at all the changes I have had to make in the past few months, but I keep reminding myself, it is worth it! I just got back from the dentist this morning. I haven't had any cavities in 25 years, and now, due to the joy of weakened enamel, I had three filled today.

0

Share this post


Link to post
Share on other sites

Yeah, that'd be nice! My PCP has been great, when I was in pain, he thought it was my gall bladder initially, and continued to send me for testing when they were not finding an answer. My gastro zeroed right in on celiac, so I am grateful for that, especially hearing so many horror stories on the forum. However, I would have liked more follow up and advice. I'll see him again in the spring, but that is too long of a wait for me.

I went misdiagnosed years ago, and this was a fluke deal that they actually found out what was going on. Now I need to find someone that will actually HELP me, instead of just sending me on my way with no help at all!

0

Share this post


Link to post
Share on other sites

Okay, you can survive nicely on a lower carb diet (raises hand from personal experience) but you will need to take in some form of good dietary fat for slow burning longer term energy, such as olive oil, coconut oil or coconut milk, nuts, eggs, chocolate, etc. This might be as simple as you add in a big spoonful of peanut butter to breakfast, eat more olive oil at lunch and dinner, make your own trail mix for snacks, try baking with SCD or paleo type recipes with nut flours, etc. (I'm guessing you don't do butter and cheese right now).

My husband voluntarily eats gluten free at home with me, but he does not have my metabolism, and I have learned the hard way I must literally feed him a snack before doing something in the later afternoon, preferably a higher fat & protein carb such as something I baked, or at least a rice cake with something, or he will crash and burn while I'm happily chugging along on my banana and peanut butter or gorp snack. Maybe try slathering that sweet potato in almond butter, for example.

0

Share this post


Link to post
Share on other sites

Okay, you can survive nicely on a lower carb diet (raises hand from personal experience) but you will need to take in some form of good dietary fat for slow burning longer term energy, such as olive oil, coconut oil or coconut milk, nuts, eggs, chocolate, etc. This might be as simple as you add in a big spoonful of peanut butter to breakfast, eat more olive oil at lunch and dinner, make your own trail mix for snacks, try baking with SCD or paleo type recipes with nut flours, etc. (I'm guessing you don't do butter and cheese right now).

My husband voluntarily eats gluten free at home with me, but he does not have my metabolism, and I have learned the hard way I must literally feed him a snack before doing something in the later afternoon, preferably a higher fat & protein carb such as something I baked, or at least a rice cake with something, or he will crash and burn while I'm happily chugging along on my banana and peanut butter or gorp snack. Maybe try slathering that sweet potato in almond butter, for example.

I eat eggs for breakfast every day, and avocado with my lunch :) I never have been a fun of butter, but cheese is something I refuse to give up so I eat a little every day. Doesn't seem to matter what I do or don't eat, I still feel the same :(

0

Share this post


Link to post
Share on other sites

I guess my problem is - what do I do now? They tested my blood for things that run parallel to ulcerative colitis (folic acid and B12) and ran just the TSH test for thyroid. Somehow, I have to get my metabolism going again, because I'm pretty sure it's disappeared...and weight has taken it's place.

0

Share this post


Link to post
Share on other sites

Are you taking in enough calories? A drop in calorie intake could slow down your metabolism, leading to fatigue and possible weight gain. When I first went gluten free I was cutting out the gluten foods, but not replacing the calories with other foods.

0

Share this post


Link to post
Share on other sites

Are you taking in enough calories? A drop in calorie intake could slow down your metabolism, leading to fatigue and possible weight gain. When I first went gluten free I was cutting out the gluten foods, but not replacing the calories with other foods.

I eat a pretty healthy balanced diet, and calorie wise, it's the same as it has been the last 10 years - which is why this is all so weird to me. It doesn't seem to matter how much or how little I eat (trust me I've played with this), I have NO energy, and the weight piles on.

0

Share this post


Link to post
Share on other sites

I thought I was loosing my mind for the 3years prior to my celiac diagnosis, a neurologist shook his head, and sent me on my way saying it's in your head, nothing further I can do for you. Then some dentist were involved , no one could help me with the terrible pain that was in my head. Diagnosed with fractured teeth, surgery done to remove them and the pain would still come back. I called that pain a monster in my head, oh the bad days my children suffered along with me.

Finally, after years of suffering all types of symptoms that no one could put together face, head, neck, eye, arm pain, weight gain, bloating, gas, constipation and diarrhea, exhaustion and sever depression an amazing GI in NYC put it all together.

Celiac, Trigeminal Neurologia ,microscopic colitis , along with additional food allergies.

Now I just have to figure out what I can eat that actually provides a healthy balance for my skinny body.

Such a shame that it takes so long to put these pieces together . Life is too short...

0

Share this post


Link to post
Share on other sites

I thought I was loosing my mind for the 3years prior to my celiac diagnosis, a neurologist shook his head, and sent me on my way saying it's in your head, nothing further I can do for you. Then some dentist were involved , no one could help me with the terrible pain that was in my head. Diagnosed with fractured teeth, surgery done to remove them and the pain would still come back. I called that pain a monster in my head, oh the bad days my children suffered along with me.

Finally, after years of suffering all types of symptoms that no one could put together face, head, neck, eye, arm pain, weight gain, bloating, gas, constipation and diarrhea, exhaustion and sever depression an amazing GI in NYC put it all together.

Celiac, Trigeminal Neurologia ,microscopic colitis , along with additional food allergies.

Now I just have to figure out what I can eat that actually provides a healthy balance for my skinny body.

Such a shame that it takes so long to put these pieces together . Life is too short...

I also had teeth break over the past couple years, before I was diagnosed. The dentist couldn't understand why they broke. There was no decay, no cavities. Now I know.

0

Share this post


Link to post
Share on other sites

I also had teeth break over the past couple years, before I was diagnosed. The dentist couldn't understand why they broke. There was no decay, no cavities. Now I know.

I too have had HORRIBLE teeth since my teenage years...one more thing I have an answer to after finding out about all of this.

0

Share this post


Link to post
Share on other sites

I too have had HORRIBLE teeth since my teenage years...one more thing I have an answer to after finding out about all of this.

I actually had very strong healthy teeth for most of my life. Lots of cavities as a kid, but then none for 25 years, until I started to really get ill in the past couple years. That was when the broken teeth started. This past dentist appt I had three cavities. Two of my three sisters have had tons of problems with their teeth, as well as other issues that could be celiac. They haven't been tested yet, however. I've been gently sharing info with my family, and encouraging them to at least consider the possibility.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,644
    • Total Posts
      921,583
  • Topics

  • Posts

    • The first two tests (at least in the US and most of the EU) have been replaced by the DGP tests (at the bottom) of GFinDC's list of celiac tests.  Not all celiacs test positive to the common Screening TTG.   The TTg is good and catches most and it was cheaper to run the best one (it is all about the money), but researchers realized they were not catching all celiacs.  Here is a link to the University of Chicago's celiac website.  When I was diagnosed three years ago, this site recommended just the TTg (as did the American GI Association).  Now they have expanded the list of celiac tests.   http://www.cureceliacdisease.org/screening/ Luckily, my GI must have just attended a GI conference and he ordered the complete panel for me.  ($400). It paid off.  Only my DGP IGA was positive and the rest of the blood panel (including the popular TTG test) was negative.  My biopsies revealed some severe intestinal damage.  My new health provider only allows PCP/GP doctors to only order the TTG.  So, if I want the follow-up testing to see if I have improved or had a gluten exposure, I must go to my New GI.  Yep, it is all about the money!   Keep eating gluten and make sure your  GI takes four to six samples during the endoscopy.  Maintain copies of all your results.   Your symptoms?  Yes, there are over 300 celiac disease symptoms.  celiac disease does not just affect the gut, but mis-informed and those who do not keep up with the latest in medical, do not seem to know that!   Do not give up!  
    • It's great to hear from you, Nightsky.  Glad to also hear of your steady progress.  Living gluten free is definitely a learning process, and even the baby steps are times to celebrate.  Wish you all the luck in the world as you continue to heal for the glutenization.  
    • Hi Nicky, When you first go gluten-free your symptoms often do change.  Feeling better or worse is possible.  The healing process is a major change in our gut and that means a big change in the gut flora is likely,  which can cause symptoms by itself.  Additionally the immune system doesn't stop making antibodies on a dime.  the immune system keeps working  to defeat the gluten invaders until it is darn good and ready to take a break. You really shouldn't start the gluten-free diet until all testing is completed.  That includes a full celiac disease panel and an endoscopy with biopsy samples.  It's much easier to complete testing while still a gluten eater than it is to stop gluten and go  back on it for testing later.
    • Hi Kircket, Welcome to the forum! Yes, he could be wrong.  Not everyone passes the blood tests.  And they are just one part of the diagnostic process anyway, although an important one.   Did you have the complete celiac antibodies panel? Anti-Gliadin (AGA) IgA
      Anti-Gliadin (AGA) IgG
      Anti-Endomysial (EMA) IgA
      Anti-Tissue Transglutaminase (tTG) IgA
      Deamidated Gliadin Peptide (DGP) IgA and IgG
      Total Serum IgA If you didn't have the full celiac disease antibodies test panel, I'd insist on getting it done.  There have been numerous people on the forum who tested positive on one antibody but not on others.
    • Three years ago I lost about 40kgs (Aussie lol) by better diet & exercise. All was going great til I stopped losing. I upped my exercise but bizarrely started gaining weight. One night a week of not being able to sleep soon became two, then virtually every night with either 1-2hrs tops or none at all. These weird symptoms started about two years ago, becoming worse in say, the last 9mnths. Then I started to get diarrhea. Occasionally then weirdly 2-3 days with multiple occurences then a day or two with nothing, then back to loose & offensive. My GP ran tests, including the TTga (hope that's  right) antibody blood test. Negative so he tells me that's not it. After 9mnths of this he shrugs and says, "I don't know what it is I've run out of ideas what ideas do you have?" Finally refers me to a gastrointerogist.  Private, of course and can't really afford it but we (my fiance and I) go. Stools and blood samples are ordered, basically bye, see you in a month. I have looked my symptoms up and they seem to point to Celiac. Today we went back. I have been having bloated stomach, sore back and limbs,  lovely burps, constant urination and crushing anxiety attacks folowed by depression (which I have never had before in my life). Admitted over the last weekend I didn't sleep for two and a half days and found myself hallucinating and crying to just be able to sleep. Mr fancy pants gastrointerogist says," Hey great news, the stools samples rule out parasites and Crohns!" I tell him how excrutiating the last month has been to which he replies, "It's not Celiac disease, (points at negative blood test results). Celiac doesnt present with diarrhea, anxiety and frquent urination all together." I also had a fecal occult blood test which showed positive & notes say are maybe due to a lower gi bleed, and a ct scan that says shows some damage which, in their words, could be due to a condition such as Celiac disease. He has booked me for a double scope as the next step, has a few ideas what it could be (won't tell me because he doesn't want me to be 'anxious'). Told me to consider that all these symptoms could be me just worrying and being anxious. Told him when this started I was not worried about anything, shrugged and said, It could stil have happened, hey, sometimes we never find out what causes it and your just stuck with diarrhea forever." Then as I was leaving he slapped me on the back and said, "Don't worry so much, see you soon." I need to have the scopes done but is it me or are the things I was told today not true?  I would honestly love it not to be Celiac disease but could he be wrong?
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,651
    • Most Online
      3,093

    Newest Member
    Kricket73
    Joined