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Renegade

Seriously, That Doesn't Make Sense

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My GI pain and bloating (mostly) went away when I started the gluten-free diet but at month 3 I felt horrible. It attacked my joints, made my hair fall out, and caused extreme fatigue - it hurt to hold a book and I had to rest going up stairs. It eventually got better, but I guess I needed to get worse before I got better.

 

I agree with ethe others that you could have something else going on. I think I remember on another thread that you said you had had your thyroid tested and it was normal... do you have your lab results? Constipation, fatigue and pain are classic hypothyroidism symptoms. I have bothe celiac disease and hypothyroidism so I know from experience how unrecognized hypthyroidsim can bring you down low.

 

If you have your labs, recheck them. Most thyroiditis people say that your TSH should be near a 1, free T4 and free T3 should be in the 50-75% range of the lab's normal reference range, and total T4 and T3 should be ignored as they don't tell you much at all.  I'm in Alberta, and our TSH range is 0.2-6.0 which is broader than most places in the world. When my TSH is above a 1 I feel like crap (dry skin, C, fatigue) even though the doctor says my "labs are normal and it is just a coincidence that I am having hypothyroid symptoms because it must be due to something else" - no idea what the 'something else' is supposed to be though. :huh: If you are on thyroid meds, you might need different ones; I know the Synthroid I was on initially did not work for me.

 

I think naturopaths can check your thyroid levels if a doctor won't.

 

Stay gluten-free and check out other issues. Check your thyroid. Check vitamin levels (K, Fe, B's, D, zinc, Ca are often low). Check for anemia. Check your adrenals (cortisol). Try probiotics and maybe digestive enzymes. Avoid all dairy (that causes pain in half of all celiacs in the first 6 months or so gluten-free). Hopefully you'll feel better or find answers as time goes on. You are very early in your recovery time, you could just need more time to feel better... It can take months to years.

 

Best wishes.


Nicole 

"Acceptance is the key to happiness."

ITP - 1993

Celiac - June, 2012

Hypothyroid - August, 2012

CANADIAN

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My thyroid level is 2.42 and I have all hypo symptoms except I lose weight instead of gain. I think I need to get a 2nd opinion on mine. Kaiser won't recognize or treat in that so called normal range.


Lori age 40

 

GERD diagnosed Feb 2012

acute adult onset asthma diagnosed April 2012

celiac diagnosis July 2013

osteopenia Sept 2013

Dysautonomia: POTS (autonomic nervous system dysfunction)

DQ2 Gene

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My thyroid level is 2.42 and I have all hypo symptoms except I lose weight instead of gain. I think I need to get a 2nd opinion on mine. Kaiser won't recognize or treat in that so called normal range.

I had to leave my family doctor and go to an alternative type doctor, and pay out of pocket, to get my thyroid treated better because my family doctor refused to up my dose once it hit 3 something. It was a 2 something years ago and I felt just as bad as when it was 14... I would get that second opinion. Good luck.  :)


Nicole 

"Acceptance is the key to happiness."

ITP - 1993

Celiac - June, 2012

Hypothyroid - August, 2012

CANADIAN

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*deleted*


Lori age 40

 

GERD diagnosed Feb 2012

acute adult onset asthma diagnosed April 2012

celiac diagnosis July 2013

osteopenia Sept 2013

Dysautonomia: POTS (autonomic nervous system dysfunction)

DQ2 Gene

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What should my free T4 be at? It's 1.2

 

Hon, I'm pretty sure we covered all that here. :)

 

https://www.celiac.com/forums/topic/103212-confused-about-the-tsh-guidelines-are-my-levels-good/


"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif

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  Chiropractors and naturopaths might not have adequate training to know what is wrong with you.

 

Have to second this thought, too, Renegade.

 

Please believe me when I tell you, they can only do so much for you. My chiropractor gets very upset when he hears that his colleagues

are "practicing medicine".

 

And honestly, I do not know how a chiro could have possibly "stretched your colon". 

 

I am sorry someone told you to go G F before testing you for celiac. It would have been helpful for you to have had those tests run. This happens  too frequently and this causes delays in DX and misdiagnoses too. 


"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif

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*deleted*


Lori age 40

 

GERD diagnosed Feb 2012

acute adult onset asthma diagnosed April 2012

celiac diagnosis July 2013

osteopenia Sept 2013

Dysautonomia: POTS (autonomic nervous system dysfunction)

DQ2 Gene

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The first few months of going gluten-free can definitely be tough, but if you're struggling this much, then something else could definitely be up.

1. talk to you doctor. They should have had you tested for Celiac before going gluten-free, but you could still give the tests a shot and see what it turns up. And endoscopy might also show if something else is going on in your gut (gastritis, ulcer, etc etc). But unless you decide to start eating gluten again for at least a month, then it's probably not going to show positive for Celiac. You should discuss other possibilities with your doctor, though. Get a full blood/vitamin/thyroid panel done. And yeah, if you're in Canada, tests and such should be covered by medicare, and some specialists are covered if you have a referral.

2. check for hidden gluten. Sometimes there's cross contamiation with something you wouldn't expect. Check all the labels, make sure you're not using any contaminated stuff in your kitchen, etc etc.

3. Whole foods are good foods. Did you say something about going off all grains?? Sure, grains can be hard on the system, but cutting them completely is not advisable if you don't have a reason. Just eat lots of veg and proteins too. And yes, some veggies CAN be hard to digest. Try digestive enzymes and probiotics to help. It can take quite a while for your body to adjust to eating things its not used to. Also, cutting dairy for a while can sometimes help.

4. be patient. Whether you have Celiac or not, it's not going to solve itself over night.

 

Anyway, good luck! Hope you can get to the bottom of it soon.


~ Be a light unto yourself. ~ - The Buddha

- Gluten-free since March 2009 (not officially diagnosed, but most likely Celiac). Symptoms have greatly improved or disappeared since.
- Soy intolerant. Dairy free (likely casein intolerant). Problems with eggs, quinoa, brown rice

- mild gastritis seen on endoscopy Oct 2012. Not sure if healed or not.
- Family members with Celiac: Mother, sister, aunt on mother's side, aunt and uncle on father's side, more being diagnosed every year.

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