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Is This Truly Normal?


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23 replies to this topic

#1 luvrdeo

 
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Posted 24 September 2012 - 02:49 PM

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
lymphocytic colitis 8/1/12
diagnosed w/celiacs 8/14/12
gluten-free 8/14/12
dairy free, grain free, corn free 10/9/12

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#2 Takala

 
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Posted 24 September 2012 - 03:32 PM

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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#3 Mdhriggin

 
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Posted 24 September 2012 - 05:40 PM

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

 
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Posted 24 September 2012 - 05:54 PM

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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Nicole Posted Image

"Acceptance is the key to happiness."

ITP - 1993
Celiac - June, 2012
Hypothyroid - August, 2012

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#5 luvrdeo

 
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Posted 25 September 2012 - 05:48 AM

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
lymphocytic colitis 8/1/12
diagnosed w/celiacs 8/14/12
gluten-free 8/14/12
dairy free, grain free, corn free 10/9/12

#6 luvrdeo

 
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Posted 25 September 2012 - 05:51 AM

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
lymphocytic colitis 8/1/12
diagnosed w/celiacs 8/14/12
gluten-free 8/14/12
dairy free, grain free, corn free 10/9/12

#7 luvrdeo

 
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Posted 25 September 2012 - 06:00 AM

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
lymphocytic colitis 8/1/12
diagnosed w/celiacs 8/14/12
gluten-free 8/14/12
dairy free, grain free, corn free 10/9/12

#8 CeliacShack

 
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Posted 25 September 2012 - 06:12 AM

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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Colette

Diagnosed with PCOS - 2001

Biopsy- diagnosed Celiac / gastritis - June 2012

Trying to heal

#9 luvrdeo

 
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Posted 25 September 2012 - 07:41 AM

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
lymphocytic colitis 8/1/12
diagnosed w/celiacs 8/14/12
gluten-free 8/14/12
dairy free, grain free, corn free 10/9/12

#10 CeliacShack

 
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Posted 25 September 2012 - 08:14 AM

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
Colette

Diagnosed with PCOS - 2001

Biopsy- diagnosed Celiac / gastritis - June 2012

Trying to heal

#11 GottaSki

 
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Posted 25 September 2012 - 08:15 AM

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

-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#12 CeliacShack

 
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Posted 25 September 2012 - 08:19 AM

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
Colette

Diagnosed with PCOS - 2001

Biopsy- diagnosed Celiac / gastritis - June 2012

Trying to heal

#13 GottaSki

 
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Posted 25 September 2012 - 08:37 AM

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

-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#14 CeliacShack

 
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Posted 25 September 2012 - 08:45 AM

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
Colette

Diagnosed with PCOS - 2001

Biopsy- diagnosed Celiac / gastritis - June 2012

Trying to heal

#15 luvrdeo

 
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Posted 25 September 2012 - 09:19 AM

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
lymphocytic colitis 8/1/12
diagnosed w/celiacs 8/14/12
gluten-free 8/14/12
dairy free, grain free, corn free 10/9/12




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