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New And Have Some Questions.


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#1 ChrisMathis

 
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Posted 21 September 2012 - 12:27 PM

I'm new to the boards and looking for any advice anyone can offer. First a brief history of my symptoms. I've always had digestive issues which led to a diagnosis 8 years ago of GERD resulting in Barrett's Esophagus. I have Hashimotos thyroiditis with nodules and had part of my thyroid removed 10 years ago after my first miscarriage followed by another five miscarriages.
I am on Topamax daily for Migraines, and also Maxalt when the topamax isn't enough. I was diagnosed with Benign Fasiculation Syndrome 3 years ago which I've since read is most likely linked to my recent diagnosis of extremely low Vitamin D <4. I also have geographic tongue. I suffer from excruciating stomach pains and alternate between constipation and diarrhea. I get very bloated and have terrible gas.
My Doctor's explanation for my low Vitamin D was that I needed more sun exposure!! I live in Texas and we have a pool where I drink my coffee outside every morning without sunscreen before it gets too hot so I get more than enough sun exposure so I just don't buy that theory. I'm extremely fatigued and irritable and like I told my Doctor it seems like for the last 3-4 years like I've developed attention deficit disorder because I can't concentrate on anything and it's also like I'm living in a fog.

From what I've read myself a lot of my symptoms point toward Celiac and if not Celiac's then definitely an intolerance to gluten.

I have regular endoscopies for my Barrett's so should I just bypass my family Doctor and just see my GI and have him do all the tests or have the blood work done first? I've recently moved from Dallas to The Woodlands in Houston so if anyone has any recommendation for a good GI in Houston I'd appreciate that also.

Thanks in advance for any help.
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#2 shadowicewolf

 
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Posted 21 September 2012 - 12:41 PM

As long as you stay on gluten throughout the testing proces, i don't see why not. It might be better imo.
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#3 ChrisMathis

 
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Posted 21 September 2012 - 12:55 PM

Thanks for responding. Yes I've read enough to know that I have to stay on Gluten to get an accurate diagnosis.

One more thing I wanted to ask, I've developed all sorts of sensitivities to foods, chemical, perfumes, household cleaners etc where just the smell will give me a headache or eating something will give me a reaction. I've begun to feel like a hypochondriac!
Has anyone else had reactions like this?
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#4 squirmingitch

 
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Posted 21 September 2012 - 12:58 PM

As long as you stay on gluten throughout the testing proces, i don't see why not. It might be better imo.


I agree. Just have your GI do it.





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Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 


#5 GottaSki

 
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Posted 21 September 2012 - 12:59 PM

Welcome Chris!

You certainly have many symptoms that point to Celiac Disease. You can have either your primary or GI order the full celiac blood panel. Many doctors will want to run just one or two of the tests, but the full panel really gives the best information with regard to possible Celiac Disease.

Full Celiac Blood Panel:

Total Serum IgA
Tissue Transglutaminase IgA and IgG
Gliadin IgA and IgG
Endomysial Antibody IgA
Deamidated Gliadin Peptide IgA and IgG

You mention severe deficiency in D - nutritional deficiencies are another strong indicator of Celiac, so if you haven't had them, it is wise to have the following run:

A, Bs, K, Calcium, Magnesium, Iron, Ferritin, Copper, Zinc

Caution - unbelievable as it sounds - not all gastroenterologist are well trained or have experience with Celiac Disease. If you are changing GIs, I'd look for one that is actively involved with Celiac patients. Local Celiac support groups are a great place to find a recommendation.

Good Luck to you!
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-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 :)


#6 beachbirdie

 
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Posted 21 September 2012 - 01:16 PM

I'm new to the boards and looking for any advice anyone can offer. First a brief history of my symptoms. I've always had digestive issues which led to a diagnosis 8 years ago of GERD resulting in Barrett's Esophagus. I have Hashimotos thyroiditis with nodules and had part of my thyroid removed 10 years ago after my first miscarriage followed by another five miscarriages.


Thanks in advance for any help.



How are they managing your thyroid? I have to ask though it seems like it would be obvious; are you on thyroid replacement?

Do they adjust your thyroid by TSH only or do the monitor your free thyroid hormone levels as well? They should be checking Free T3 and Free T4 both, especially since you had partial thyroidectomy. TSH isn't a thyroid hormone, it is a pituitary hormone that signals the thyroid to produce more thyroid hormone. Once a person is on thyroid meds, it messes up the feedback loop between pituitary and thyroid, and TSH is not a reliable tool for managing meds.

If you get copies of your lab results, you want to see that your thyroid hormones are in roughly mid-range. Most thyroid patients feel best with a TSH below 2.0, my doctor keeps mine suppressed to .03. No, I am not hyper. There is some literature "out there" somewhere that suggests some doctors are finding it helpful to suppress TSH in Hashimoto's patients. But, everyone is different, hopefully you have a doc who can help you find the level that feels good to you!

Both thyroid AND celiac have powerful effects on the ability of the body to sustain pregnancy.

I am so sorry for all your pregnancy losses. That is heartbreaking for sure. :(
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1999 - Hypothyroid
2003 - Hashimoto's Disease
2008 - Diverticulitis
2009 - Significant Vit D Deficiency
2011 - Diverticulitis again
2011 - HLA-DQ2.2
2012 - TtG IgG positive... I am now, finally, Gluten Free - 5/16/2012

#7 ChrisMathis

 
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Posted 21 September 2012 - 01:43 PM

Welcome Chris!

You certainly have many symptoms that point to Celiac Disease. You can have either your primary or GI order the full celiac blood panel. Many doctors will want to run just one or two of the tests, but the full panel really gives the best information with regard to possible Celiac Disease.

Full Celiac Blood Panel:

Total Serum IgA
Tissue Transglutaminase IgA and IgG
Gliadin IgA and IgG
Endomysial Antibody IgA
Deamidated Gliadin Peptide IgA and IgG

You mention severe deficiency in D - nutritional deficiencies are another strong indicator of Celiac, so if you haven't had them, it is wise to have the following run:

A, Bs, K, Calcium, Magnesium, Iron, Ferritin, Copper, Zinc

Caution - unbelievable as it sounds - not all gastroenterologist are well trained or have experience with Celiac Disease. If you are changing GIs, I'd look for one that is actively involved with Celiac patients. Local Celiac support groups are a great place to find a recommendation.

Good Luck to you!


Thanks for the welcome, I'm glad I found the boards. I believe my calcium was low normal and my iron was slightly below normal but he wasn't worried about that. He ordered magnesium because I'd requested it but the lab skipped it!! But the others were not done so I'll request those. And yes I have been reading that it's best to have a GI who is actively involved with Celiac patients so I'll contact my local support group for a recommendation.

Thanks.
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#8 ChrisMathis

 
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Posted 21 September 2012 - 01:52 PM

How are they managing your thyroid? I have to ask though it seems like it would be obvious; are you on thyroid replacement?

Do they adjust your thyroid by TSH only or do the monitor your free thyroid hormone levels as well? They should be checking Free T3 and Free T4 both, especially since you had partial thyroidectomy. TSH isn't a thyroid hormone, it is a pituitary hormone that signals the thyroid to produce more thyroid hormone. Once a person is on thyroid meds, it messes up the feedback loop between pituitary and thyroid, and TSH is not a reliable tool for managing meds.

If you get copies of your lab results, you want to see that your thyroid hormones are in roughly mid-range. Most thyroid patients feel best with a TSH below 2.0, my doctor keeps mine suppressed to .03. No, I am not hyper. There is some literature "out there" somewhere that suggests some doctors are finding it helpful to suppress TSH in Hashimoto's patients. But, everyone is different, hopefully you have a doc who can help you find the level that feels good to you!

Both thyroid AND celiac have powerful effects on the ability of the body to sustain pregnancy.

I am so sorry for all your pregnancy losses. That is heartbreaking for sure. :(


Yes I'm on Synthroid and like you I feel best when my levels are between 0.3-0.5. I had a great Endocrinologist in Dallas since I was diagnosed and then we moved to Houston and I've been trying to find a new specialist but no luck so I'm going to just keep going back to Dallas for my app's. She's worth the trip!! Yes the M/C's were very hard :( I had all sorts of blood clotting issues as well as the autoimmune stuff so it just didn't work for us in the end and I'm still trying to get my health under control. I'm tired of feeling ill all of the time but I want to know for sure whether or not I have Celiac's before I start gluten free as I travel a lot and need to be 100% committed to this life change and diet.
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#9 tom

 
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Posted 21 September 2012 - 02:26 PM

...One more thing I wanted to ask, I've developed all sorts of sensitivities to foods, chemical, perfumes, household cleaners etc where just the smell will give me a headache or eating something will give me a reaction. I've begun to feel like a hypochondriac!
Has anyone else had reactions like this?

*raises hand*
And I know there are others here.
For me it seems to be anything w/ fumes, whether turpentine, Pinesol, strong vinegar or whatever.
I've found I reflexively hold my breath walking past conference rooms at work, where perfumes/colognes can linger. I work after-hrs primarily.

I haven't found a lot to do about it except put it in the MCS (multiple chemical sensitivites) category that needs a lot more research.

Sometimes there's weird very localized headaches to go w/ the dizziness &/or prickly scalp/head.

So, there are times I have to get in a different checkout line or go wander for few min to avoid breathing in someone's perfume or cologne. It can feel like halfway-to-bubbleboy. No way I stay in an elevator w/ a perfumer.

I think it was supposed to get better as everything got better, but it's certainly lagging for me, to say the least.
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>>>>>>> tom <<<<<<<

Celiac 1st diagnosed as a toddler, in the 60s. Docs then, between bloodletting & leech-tending, said "he'll grow out of it" & I was back on gluten & mostly fine for 30yrs.

Gluten-free since 12-03
Dairy-free since 10-04
Soy-free since 5-07

#10 ChrisMathis

 
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Posted 21 September 2012 - 02:39 PM

*raises hand*
And I know there are others here.
For me it seems to be anything w/ fumes, whether turpentine, Pinesol, strong vinegar or whatever.
I've found I reflexively hold my breath walking past conference rooms at work, where perfumes/colognes can linger. I work after-hrs primarily.

I haven't found a lot to do about it except put it in the MCS (multiple chemical sensitivites) category that needs a lot more research.

Sometimes there's weird very localized headaches to go w/ the dizziness &/or prickly scalp/head.

So, there are times I have to get in a different checkout line or go wander for few min to avoid breathing in someone's perfume or cologne. It can feel like halfway-to-bubbleboy. No way I stay in an elevator w/ a perfumer.

I think it was supposed to get better as everything got better, but it's certainly lagging for me, to say the least.


Thanks, Tom.

You sound just like me! I practically run past the sales people in the mall when they try to spray you with the latest perfume..lol..and my poor husband is banned from wearing cologne these days. My neurologist said I had an over sensitized brain due to the migraines but never went any further than that but this is the same guy who just settled for diagnosing me with benign fasiculation syndrome without even testing me for any vitamin or mineral deficiencies. So this could be a symptom of gluten sensitivity or Celiac's then?
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#11 shadowicewolf

 
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Posted 21 September 2012 - 03:17 PM

ditto with the chemical stuff, i get the worst headaches and allergy things to them.
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#12 GottaSki

 
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Posted 21 September 2012 - 03:32 PM

Bubble-Girl reporting in - my family has discussed creating a bubble suit for me to avoid everything I am sensitive to - more than once ;)
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-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 :)


#13 tom

 
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Posted 21 September 2012 - 03:55 PM

...So this could be a symptom of gluten sensitivity or Celiac's then?

I'd be more likely to call it 'associated with' NCGI or Celiac than a 'symptom of'.
Unfortunately, I'm sure plenty of GIs would disagree w/ that, partly due to the over-specialized nature of modern medicine.
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>>>>>>> tom <<<<<<<

Celiac 1st diagnosed as a toddler, in the 60s. Docs then, between bloodletting & leech-tending, said "he'll grow out of it" & I was back on gluten & mostly fine for 30yrs.

Gluten-free since 12-03
Dairy-free since 10-04
Soy-free since 5-07

#14 1desperateladysaved

 
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Posted 21 September 2012 - 05:26 PM

Thanks for responding. Yes I've read enough to know that I have to stay on Gluten to get an accurate diagnosis.

One more thing I wanted to ask, I've developed all sorts of sensitivities to foods, chemical, perfumes, household cleaners etc where just the smell will give me a headache or eating something will give me a reaction. I've begun to feel like a hypochondriac!
Has anyone else had reactions like this?


Yes, and I do not think you are a hypochondriac either. I avoid perfume counters, rice cooking, bakeries, and vinegar smells. I react to them, but I am not saying that it is a celiac reaction. It is possible that it is allergy instead. But you asked about reaction to smells and I say "yes>"
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#15 ChrisMathis

 
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Posted 21 September 2012 - 05:34 PM

Yes, and I do not think you are a hypochondriac either. I avoid perfume counters, rice cooking, bakeries, and vinegar smells. I react to them, but I am not saying that it is a celiac reaction. It is possible that it is allergy instead. But you asked about reaction to smells and I say "yes>"



Thanks for the responses and yes I should have said associated with and not a symptom of Celiac's or gluten intolerance. I think possibly my immune system is so out of whack that it is reacting to a lot of different things. Good to know that I'm not a hypochondriac!
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