• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      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.

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:
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
Ads by Google:


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
      107,362
    • Total Posts
      935,696
  • Member Statistics

    • Total Members
      65,042
    • Most Online
      3,093

    Newest Member
    Cristina0720
    Joined
  • Popular Now

  • Topics

  • Posts

    • Thankyou ch88 you are so very kind, im so glad there are forums like this, so helpful.  Only signed up the other day and everyone is great.
    • My GI told me that everything looked great visually (endoscopy), but my biopsies revealed moderate to severe intestinal damage.  ☹️  You just have to wait for the pathologist's report.  
    • I ate there July 23 2017, had cheeseburger with gluten free bun (charged extra 2 dollars) which tasted very good. dressed burger with tomato, pickles and onion and even mayo with no unpleasant affects.  I appreciated the choice of gluten-free bun.  Also, the young man serving us asked if I wanted my French fries on the same plate as my burger, I guess their fries are not fried in a dedicated fryer.  Nice of him to give me a heads up though.  I am NCGS not proved as celiac disease.
    • I think you will find that aromatherapy is safe.  I have had the same thing when having facials many, many times over 12 years gluten free and have never, ever had a problem. I have never found any aromatherapy that contained gluten. I am a very sensitive, diagnosed Celiac.  As far as lotion is concerned, you won't have a problem if you wash your hands, which I cannot imagine NOT doing before eating.  That is Celiac 101.  You only have to screen hand lotions for personal use and anything that goes onto the lips.  Eye drops also should be gluten-free as you put that directly into the eye and it can make it's way down into your gut. Hair salons........no, never had a problem.  If a salon uses good products, they will not contain gluten. Again, in 12 years of checking anything new they use, never found any gluten component.  I color and trim my hair once a month and I'm pretty sure I'd be dead by now if I ingested gluten for so often for 12 years.  You really do not want to ingest anything that is sprayed and I can't say that I have.  It's a bad idea for many other reasons besides gluten. I know you are newly diagnosed and yes, you need to check ingredients BUT gluten is not everywhere. If you check whatever they are using and it does not contain the dreaded gluten, then do not worry about it.
    • There is a lot of information on site about living with Celiac disease. A good idea is to take a look at the "coping with" section and the "newbie info 101" thread. There is a lot of good information about cross contamination and proper nutrition.
  • Upcoming Events