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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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    • Ugh!  So, you have early stages of celiac disease and that was after being gluten light?  It is a shame that your doctor is not comfortable about giving you a formal diagnosis because you don't have enough damage!  Time for a new GI.  You can also as for another pathologist to read your biopsies, but seriously....... Have a conversation with your current doctor about the reasons why he is hesitating.  He would rather you continue to become more ill or improve your health?   Are you going to be scarred for life with a celiac disease diagnosis? Maybe he is one of those people who think it is impossible to live with wheat, rye or barley!   I don't get it! 
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    • Hi Fidel, The original poster hasn't been on the site for several years, so you may not get a response from them. But welcome to the forum!  
    • False positive or negative?  I was diagnosed with Coeliac and the more rare Dermatitis Herpetiforma.  I know that symptoms like youre describing could be a whole variety of conditions.  I have a friend who has ulcerative colitis whose symptoms are similar to what you are describing.  You could have ulcers, but keeping it real i have to say youre also describing opiate withdrawl.  So if youve been on pain killers prescibed or not that could be it also.  Best of luck
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