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New To The Site...looking For Advice/input


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#1 MsModelSara

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Posted 17 May 2009 - 11:03 AM

Hello everyone. I have never been tested or anything for Celiac deisease or wheat/gluten intolerence or any allergy. I am thinking about doing some kind of test though. I have noticed (especially recently) that whenever I eat carbs or anything with wheat and such I get bloated and crampy. I've also seen bloody stools..I know gross and possibly too much info...sorry! I also can't get enough sleep the night after eating stuff like that either, like yesterday I gave in and ate a bunch of breads and junk foods because I have been working out alot in the gym trying to tone up and slim down a bit (I've been doing a low carb diet sort of thing and was feeling pretty good). I slept about 12 hours lastnight, and I still feel cramps lower than where my tummy is, because I get the cramped feeling slightly in my stomach immediately after eating some things but not enough to cause any kind of real pain. I hate getting gassy after eating some foods..mostly carb related, and most carbs have wheat or gluten in them somewhere I've noticed. and I always feel really bloated in my tummy area, and it's hard to lose weight! even as I am SLOWLY losing ounces here and there and dropping body fat by working out so hard, I haven't lost any inches, and even gained in my tummy area which was really disappointing. I'd like to hear any thoughts from anyone about this. A few weeks ago I even went to Barne's and Nobles to check out diet books and flipped through a gluten free diet book...but ended up going with atkins because it worked for me a few years back.

All of this is just really new to me. I have been looking at some home collection kits that you can mail in to labs and some that even process at home (like the one I found on this site actually through optimum health resource labs) and you can see results in 10 minutes. Maybe this would let me know if I am intolerant to gluten? My Dr. is an imbisil and I don't want to waste my time going to him because he doesn't listen to me. I am hypothyroid and have been officially diaganosed with that since 2005. With my current Dr. I had to go back 3 differenttimes to figure out why I was so completely tired all the time and finally found out i was in recovery from mono back in february, they took so long they missed me being in the active stage of it when i was complaining of sleeping so much. *sigh* I just wish Dr.'s would listen when a patient knows something isn't right with their bodies and take appropriate actions to help. They are so concernced with making money they could care less if someone is sick or needs help. (excuse my rant!)

I'll leave my long post to that for now. I'd really appreciate any inpuit that anyone could give me!!
Thanks so much,
Sara :-)

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#2 MsModelSara

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Posted 17 May 2009 - 11:28 AM

I forgot to add that I have on and off anemia and I also found out about a Vit. D deficiency when I found out about the mono. Come to find out I was tested for that last year and was supposed to be taking 1,000 IU daily since then and was NEVER told until I asked to be tested for D deficiency because in some people it makes you tired. So I had to get a script for 50,000 IU to take once a week for a month and now just once a month.

It's hard to find a good Dr that accepts Tricare.... Anyone know of any good ones in Central VA???

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#3 MySuicidalTurtle

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Posted 17 May 2009 - 02:54 PM

It is good that you are trying to find answers. If you are going to be tested then you must continue eating gluten everyday in order to have more accurate results. Symptoms to eating gluten when you have Celiac Disease suck. They can include long tummy aches and needing constant sleep. Sorry to hear your doctor is crap. Hopefully you can find another!

Look around on the board and you'll find lots of good information on yummie foods, dieting, and other symptoms.
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#4 MsModelSara

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Posted 23 May 2009 - 11:33 AM

It is good that you are trying to find answers. If you are going to be tested then you must continue eating gluten everyday in order to have more accurate results. Symptoms to eating gluten when you have Celiac Disease suck. They can include long tummy aches and needing constant sleep. Sorry to hear your doctor is crap. Hopefully you can find another!

Look around on the board and you'll find lots of good information on yummie foods, dieting, and other symptoms.


thanks for writing! I haven't gotten any feedback from anyone yet on here... I will search more for a good Dr. or recommendations.
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#5 ravenwoodglass

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Posted 24 May 2009 - 07:34 AM

thanks for writing! I haven't gotten any feedback from anyone yet on here... I will search more for a good Dr. or recommendations.


Hello and welcome to the board. You do sound like you could be one of us. Do go ahead and get the blood work done for celiac your regular GP or even a clinic can order a celiac panel for you. Do not go gluten free until all your testing is done. It can cause a false negative and there is a risk of a false negative even while eating gluten.
Do as mentioned check out other posts on the board and feel free to post any questions you may have. Celiac can be hard to diagnose and even if your tests are negative you should give the diet a shot after testing is finished.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#6 MsModelSara

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Posted 14 July 2010 - 06:47 AM

Hello and welcome to the board. You do sound like you could be one of us. Do go ahead and get the blood work done for celiac your regular GP or even a clinic can order a celiac panel for you. Do not go gluten free until all your testing is done. It can cause a false negative and there is a risk of a false negative even while eating gluten.
Do as mentioned check out other posts on the board and feel free to post any questions you may have. Celiac can be hard to diagnose and even if your tests are negative you should give the diet a shot after testing is finished.



Ravenwoodglass,

I just now saw that you wrote on here :-). I just sent you a message! A lot has gone on since I originally wrote this post. I have had negative blood tests for Celiac, but it was positive for Hashimoto's Thyroiditis. Stool and gene panel from EnteroLab dx'd me as having active gluten sensitivity that can be more severe due to a double copy of a gluten sensitivity gene (HLA-DQB1 Molecular analysis, Allele 1 0602 and HLA-DQB1 Molecular analysis, Allele 2 0602....Serologic equivalent: HLA-DQ 1,1 (Subtype 6,6) ), and immunologic reaction to casein as well as gluten. I do not have either of the two classic "celiac" genes but after reading many of people's stories, those aren't needed to develop Celiac...

I'm still searching and learning, trying to see what is what and trying to figure out the gluten-free diet and see if I can find a dr to retest me for celiac and such. I'm not sure that I'm negative for real. I had the same voice in my head telling me something wasn't right when I set out years ago for my thyroid problem, and it took me 7 years to get my autoimmune dx for that! I didn't give up because I know my body and knew something wasn't right.
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