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I'm Getting Recalled!


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23 replies to this topic

#16 Jnkmnky

 
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Posted 12 September 2005 - 09:27 AM

Why do you need a positive test result to choose to stay on the diet? Is it to justify the cost? Did you feel better on the diet? Were you successful at being 100% gluten free for any extended amount of time? I don't think there are any benefits to being properly dx with Celiac. No one has to get a dx to go vegan.
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#17 Matilda

 
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Posted 12 September 2005 - 01:22 PM

..
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#18 Guest_DanceswithWolves_*

 
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Posted 12 September 2005 - 01:37 PM

Erik,

I had yellow palms, cold body temp, and dry skin the whole time I was sick. I figured it was due to low thyroid but my thyroid always tested fine. I didn't believe the tests since these are all signs of low thyroid. On my own I decided to increase my thyroid meds..I was taking 3 times what I'm suppossed to take but the symptoms were still there and I was still freezing. I took a thyroid test and my doc was irritated cuz my numbers were sky high showing that I was taking waaay too much. Anyways as soon as I took gluten out of my diet my body temp went up and all those symptoms went away. It was definately the gluten causing those things and nothing else. I think you're better off staying on the diet...my original bloodwork was negative too and I went back to eating gluten and I got seriously ill from it and thought I might die.  Maybe you can try Enterolab...thats what I did and everthing came back positive.

<{POST_SNAPBACK}>

This is so confusing I could cry. I mean, I know everyone is trying to help me, but in all honesty, I don't know who to listen too. I was pretty much eating gluten-free foods (to my knowledge) and I think it's just my metabolism that's all screwed up. I'm just gonna eat and not worry about it. I cant stay in this mental state I'm in. If IBS is a symptom of Celiac, then I will just have to put up with it, and stay away from spicy & fried foods.
I talked to a co-worker of mine and he's a skinney kid too. He went to a fitness trainer and that guy told him to put on weight he would have to eat SIX full meals every day. Seriously, who has the time or even the money to do that? Rediculous.
Everyone is made differently. I'm not trying to be a model on the cover of Men's Health...but I do want to gain some weight back.
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#19 Rachel--24

 
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Posted 12 September 2005 - 03:03 PM

Erik,

I have to agree with Matilda...I don't think you went gluten-free for very long at all and in those few weeks you were slipping up and eating gluten. I think you'd have to be 100% gluten-free if you expect to see ANY improvement. I've gained over 10 lbs. now but if I mistakenly ate gluten a few times I'd easily lose it all over again as I'm not nearly all the way healed yet.
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#20 KaitiUSA

 
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Posted 12 September 2005 - 03:12 PM

I agree, and it takes a while to see results from it as well. Some people don't see results for months. I saw improvement after 3 but was not really back to normal until 8 months.
You were never completely gluten free what I could tell because you were slipping up alot.
Most doctors are worthless when it comes to celiac.
If you want to gain weight and get better you need to at least try the diet...you need to be 100% gluten free for a while though...its all or nothing and no in between..so pretty much just does not cut it...it has to be 100% or it's just like not following the diet @ all.
Celiac is commonly misdiagnosed for IBS. IBS is basically them saying they do not know what is wrong so they will give you some meds to take for it.
The meds you are on may help ease the symptoms but the underlying problem will still be there until you take care of it.
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#21 Guest_DanceswithWolves_*

 
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Posted 12 September 2005 - 03:52 PM

I agree, and it takes a while to see results from it as well. Some people don't see results for months. I saw improvement after 3 but was not really back to normal until 8 months.
You were never completely gluten free what I could tell because you were slipping up alot.
Most doctors are worthless when it comes to celiac.
If you want to gain weight and get better you need to at least try the diet...you need to be 100% gluten free for a while though...its all or nothing and no in between..so pretty much just does not cut it...it has to be 100% or it's just like not following the diet @ all.
Celiac is commonly misdiagnosed for IBS. IBS is basically them saying they do not know what is wrong so they will give you some meds to take for it.
The meds you are on may help ease the symptoms but the underlying problem will still be there until you take care of it.

<{POST_SNAPBACK}>

All I know is this: The doctor wants me to eat normally and to put some weight back on. I've had members on this board tell me that I have to have at least 3 months of Gluten in my system before I get checked for celiac disease. I have til October 11th to attempt to put weight back on, and then he will suggest another blood test for celiac disease. I still haven't received all my results back from the other blood tests. I will know that on Sept. 27th. I will tell my regular doctor when I go back that the Gastro doc told me to just eat normally, even if it makes me sick.
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#22 Jnkmnky

 
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Posted 12 September 2005 - 04:57 PM

email your stupid drs a link to this discussion so they can see for themselves your struggle to get healthy and how they're not helping. :o
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#23 ravenwoodglass

 
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Posted 15 September 2005 - 04:31 PM

I cant stay in this mental state I'm in.

<{POST_SNAPBACK}>


I hope you find some resolution soon. Please be aware that mood altering drugs can be very dangerous for celiacs, you sound real depressed and your injesting two, the prozac and the valium that is mixed with the antispasmotic in the clidinium. Also celiac disease itself can cause serious depression, being gluten-free negates the need for medication. As someone who did not show up on tests for years and years and years and has two young adults, one who has permanant extensive scars from cutting while on prozac and almost committed suicide I have to bring this up to you. Please be careful and try to keep in mind that any depression is something that will pass. I also vote for the try the diet strictly for a couple months, why American doctors want us to poison ourselves to prove something that can be 'proved' by strict dietary compliance is beyond me. $ maybe?
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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)

#24 Guest_DanceswithWolves_*

 
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Posted 15 September 2005 - 06:59 PM

Fear not.
I ain't going out like that.
It's kinda weird, I can tell when the Prozac is kicking in because there's this sudden "rush" I get. Maybe 3 seconds and it's gone. I think it's the serotonin flowing. :)
Hard to describe but I am familiar with the feeling.
Trust me, I doubt I'm going to go back to that same Gastro doc. He told me I have IBS and I should just eat whatever I want and not worry about it all. Try to put some weight back on. Now, let me get this straight, doc....you WANT me to eat food like donuts, bread etc., even though all those wrong foods are what gave me IBS in the first place?
Right. For instance, tonight at work I thought, ok try Burger King. Maybe a chicken tender crisp sandwich. Well, sure, it tasted great going down. But within 45 minutes not only was I belching really loud, but my whole back started to ache. Now, I realise I have been on my feet all day....but other nights when I eat maybe a frozen salmon fish dinner with rice...I'm fine.

I guess most of you board members are right. I either admit to myself that I am a celiac and go totally Gluten-Free without the doctor's opinion, or I continue to eat everything gluten; put up with the symptoms, and then get re-tested in three months just so I can have that little paper stating that I have celiac disease.
If I go back to that same Gastrologist still weighing either the same or less...maybe then it will sink into his med-school head that there is something wrong with me besides IBS. :angry:
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