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Is This Truly Normal?
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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!

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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 ?

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

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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.

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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.

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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...

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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!

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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.

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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 ;)

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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.

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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 :)

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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?

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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.

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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.

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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!

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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.

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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 :(

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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.

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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.

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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.

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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...

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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.

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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.

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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.

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    • Hi everyone, I've been reading this forum sporadically and have some questions of my own. I'm in my 40s and was diagnosed with celiac last December by biopsy and blood work after months of tests by my primary and then a gastro. My husband, around the same age as me, was dx'd with stage 4 cancer a month later, so admittedly it's took me longer than I'd have liked to learn about celiac. Now I feel pretty on top of my diet. I mostly make my own food - proteins and veggies, with some certified gluten-free snacks in the mix - and am pretty strict about what I will/won't eat at friend's houses or in restaurants (I prefer to go to dedicated gluten-free kitchens whenever possible). I'm doing okay on the diet, but still getting glutened every so often, usually when I let me guard down outside the home. I also periodically see my primary and a naturopath (who happens to have celiac!), but still, I have many questions if anyone would care to answer:

      -FATIGUE. I'm still so tired, fatigued so much of the time. My doctors blame this on the stress of my husband's diagnosis and my periodic trouble sleeping. But even during weeks where I'm sleeping enough (8-10 hrs a day), eating right, exercising as I can, trying to keep stress at bay, I'm still so bleeping tired. Maybe not when I wake up, but by late afternoon. Often my legs even feel weak/wooden. Has anyone else experienced greater fatigue early on after being diagnosed? This will pass, yes? I know I could cut out the sweets and that could help, but also, being a caregiver is hard and sometimes it's nice to eat your feelings between therapy sessions.  

      -SYMPTOMS CAUSED BY FATIGUE? Sometimes I'll have other "feels like I've been glutened" symptoms if I haven't gotten enough sleep, though I'm trying so hard to sleep at least 8 hours a night these days. Hasn't happened in a while thankfully, but there was a point this summer where my insomnia was bad and my arms were achy and I had some crazy flank/back pain I'd never experienced before. For weeks. Doctor ordered me to sleep sleep sleep, taking Benedryl if needed. I did, and the symptoms went away, but weird, yes? Has this happened to you? I ask because I want to make sure I'm getting all strange pains tested to the full extent if there's a chance it's something other than celiac. I do sometimes still feel that strange side stitch after a CC incident.

      -SKIN PROBLEMS. I have had a smidge of eczema since I was a teen and it - and the dermatitis herpetiformis I've acquired with my dx - are out of control right now. I recognize the connection with stress, but also, has anyone found any great natural remedies for DH to stop the itching? I've tried so many useless ointments and medicated creams, a number of them given to my by a dermo months ago. I see my naturopath this week, but thought I'd ask here too.

      -MOSTLY gluten-free KITCHEN GOOD ENOUGH? My husband is supportive of my diet and mostly eats gluten free meals with me, but we still keep a gluten-y toaster for him and the gluten-y dog food in a corner of the kitchen and he still makes the occasional meal with gluten for himself on his own cookware (ravioli, pizza, mac n cheese, etc). Or sometimes I make eggs/toast and the like for him when he's too sick to move. Otherwise, we're militant about how we cook, which cookware we use, etc. He even has a kitchen nook off our den where he makes sandwiches. But sometimes I wonder if having two separate sponges in our shared-ish main kitchen is enough and I should just banish all gluten whatsoever from the kitchen. I can't be the only one with a mixed kitchen, right? How do you do it if you have a mixed-eating family?

      Thank you so much!  
    • Hang in there!  Count your blessings.  Do something you like to do and relax. I know that is hard to do as a young mother (as I sit here in the kitchen sipping coffee quietly as my teenager is sleeping in after a late football game last night where she marched in 90 degree plus weather in full uniform).   But seriously, take a few minutes to relax!  
    • Meredith, this is very true. A colonoscopy is for diagnosis of the lower intestine, endoscopy for the upper intestine.  How did your doctor interpret the tests? I suggest you read the link Cycling Lady gave you because it contains a lot of good information. 
    • Sorry, but this product (supplement) is not even certified gluten free.   Seems odd that a product geared to Non-Celiac Gluten Intolerance would not take the extra step of getting certified.   I guess I am a Nervous Nellie, especially after the reports that several probiotics were contaminated with gluten.   https://celiac.org/blog/2015/06/probiotics-your-friend-or-foe/
    • Thank you for posting that. I've had a lot of that bloodwork done and everything is normal. At the peak of this belly bug I had blood work done and my white count was fine. I think it's just my health anxiety scaring me into thinking this is something scarier (to me) than celiac. Maybe the anxiety will subside once I go gluten-free. The anxiety is brutal.
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