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Verbal Diagnosis--Push For More Testing?


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10 replies to this topic

#1 Kerceli

 
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Posted 23 December 2012 - 08:48 PM

Hello!

I'm posting in need of some advice. I have been mostly gluten free for years now (and now strict gluten free since my recent problems..to be explained). I would always take bites of non gluten free things here and there if I wanted a
taste and never worried about contamination, but probably within the last 6 months I noticed I could no longer take little bites of things with gluten because I got horrible stomach aches and headaches. In August, I went out for dinner with friends and it was family style. I was stupid and didn't speak up about my needs so I ended up eating a lot of gluten containing food thinking oh well I'll just bear the stomach ache (this was the most non gluten-free I had had in a longggg time). Well it made me so horribly sick for a week. I couldn't eat at all. I was nauseas 24/7, had C and D, depression, anxiety, cloudy head, body aches.... Just overall felt like HELLLLL.

I called my doctor asking for a blood test. It came out negative. I then asked for a endoscopy. My doctor said I would have to eat gluten for two weeks in order for anything to show up regarding celiacs. I told him the sickness I endured was so horrible I couldn't do it again. He said there is no other option for testing though. He placed 'celiac disease' in my medical record. I am now living as a celiac... Worried about contamination, checking labels feveriously... I have found since being more careful, I react to contamination issues now, which is a first. I feel like I have all the symptoms of celiacs, but do I just go about my life saying I'm celiac when I don't really know for sure?? Any advice or thoughts would be helpful. Thanks so
much guys.
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#2 ravenwoodglass

 
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Posted 24 December 2012 - 05:20 AM

Your doctor has confirmed you are celiac and it is in your medical record plus your body tells you clearly when you eat gluten. IMHO you have a great doctor. Make sure he does a vitamin and mineral panel on you to check your levels and do urge 1st degree family members to get tested.
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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)

#3 Takala

 
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Posted 24 December 2012 - 07:29 AM

You can at least call yourself severely gluten intolerant. You could also opt for over the counter genetic testing, if you were curious to see if you do indeed have the official genes which go along with celiac. That doesn't prove anything, but can put you in the class of celiac disease being the more likely probability. You could say your diagnosis is based on a gluten challenge failure. But the "celiac" in the medical records will in some regards help you in the future if you develop related conditions, because then there is an official "reason" to test you or suspect that you may have said related conditions, because you are at higher risk. And it also means that when you undergo any medical procedures or get a pharma prescription, you have a reason to tell them to be sure you don't come in contact with gluten. Be sure to put this information in at anywhere you get prescriptions filled, also, under the "allergic to" warnings- to avoid gluten, wheat, rye, barley.

If your relatives and friends take it more seriously with the "celiac" label, then that may also be a factor in what you chose to use.
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#4 DavinaRN

 
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Posted 25 December 2012 - 01:00 PM

My blood test was negative (my endocrinologist ran it for me because I would feel sicker once I ate to raise a low blood sugar than I did with the low). She explained that the test wasn't 100% accurate, but there really is non-celiac gluten intolerant. She offered referral to GI for further testing if I needed diagnosis. I opted not to and have been gluten free almost 10 weeks; feeling better than I have in a very long time. With research, I'm thinking I have had issue since late teens possibly. Wondering what my primary doctor will have to say.
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Gluten Free since October 2012
Negative blood work, positive dietary response
Endocrinologist offered referral to GI if I needed formal diagnosis to follow the diet, otherwise just pass on wheat, barley & rye
and save my money

#5 Kerceli

 
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Posted 25 December 2012 - 08:00 PM

Hey guys thank you all so much for your responses and advice. Takala i didnt think about putting in my med record an allergy to wheat, rye, barley, etc. thanks everyone this community is invaluable!
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#6 gatita

 
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Posted 25 December 2012 - 08:57 PM

I agree you have a very advanced doctor. Because I don't have the word "celiac" in my record, I'm having a hard time getting a GI referral that my insurance will cover. It's very frustrating....

So it sounds like your diagnosis is a good thing that may help you get any additional testing you need.
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Diagnosed with wheat hates me 4/13


#7 Kerceli

 
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Posted 25 December 2012 - 10:02 PM

Hi gatita, my doctor told me there is nothing more that can be done if I don't want to have gluten for two weeks and then go get a endoscopy. So I guess other than signaling doctors of my "allergy" (at the least) its good. But I wish I could actually find out. I need to check out the over the counter genetic testing.
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#8 ravenwoodglass

 
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Posted 26 December 2012 - 07:27 AM

Hi gatita, my doctor told me there is nothing more that can be done if I don't want to have gluten for two weeks and then go get a endoscopy. So I guess other than signaling doctors of my "allergy" (at the least) its good. But I wish I could actually find out. I need to check out the over the counter genetic testing.

Please do keep in mind that genetic testing is only a small part of the diagnostic process. There are folks with the celiac associated genes that don't develop celiac and there are diagnosed celiacs that don't carry one of the two most commonly tested for genes. In the long run it is your bodies response to gluten that is the best diagnostic tool we have at present.
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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)

#9 Madagascar

 
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Posted 26 December 2012 - 09:24 AM

i had the genetic test run by prometheus labs - they test for 2 genes. the one that came up positive was the "A" gene. interestingly, we were going to have my DH tested by Xterra (not sure if i have that name right, but they do a cheek swab for $150) and discovered that they don't test for the A gene, only the B gene.

in other countries they test for up to 23 genes. so . . . genetic testing can be helpful, but it's not everything.

also, Prometheus labs said i was not likely to have celiac disease based upon where on the genetic strand my gene was, but i clearly have it. i think there is value in having the genetic test done if you have children, but there is obviously so much room for error that you can't go solely on it. i also had the antibodies done and my only positive response was in the TTG that came in at 29 with a positive diagnosis at 30. the Prometheus lab test for antibodies and genes cost . . . dun dun dun $940. i didn't know before i requested it how much it would cost, but because i have 3 young adult kids, we wanted to know. don't know yet how much the insurance will cover, but through me getting tested and learning i do have one gene, my brother and his kids have all gone gluten free, and my 3 kids have all gone gluten free. we all had some signs, but not all the same (some skin, some digestive, some mental). everyone is feeling better, so it was worth it.

the gold standard test, however, is how one responds to the gluten-free diet. so with or without a diagnosis, if you feel better, go with it.
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Childhood: canker sores, zillions of cavities, and multiple dental enamel defects (not decay). Acne began at age 9, became cystic acne at 15ish, was bad til early 20's, occasional break-outs now only if i eat certain foods.
1968 - allergic to bacon (arm rashes) & orange juice; sensitive to soy
1970s - lots of digestive problems, allergy to citrus, citric acid, cinnamon, lactose intolerant, rosacea from foods
1980s - allergic to oregano, basil, thyme, pork, strawberries, paprika, smokehouse-type seasonings, peppers
1990s - discovered digestive enzymes (YAY!) and my stomach issues resolved by 90%
2012 - diagnosed with celiac via blood tests (tTG) and genes (HLA DQA1*0201: DQB1*0202)
After learning about celiac, it is obvious my mom had it (ulcerative colitis), my brother has it, and my 3 young adult children have it (2 have digestive problems + anxiety; one has DH). we all went gluten-free november 2012.

#10 kerid

 
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Posted 26 December 2012 - 11:39 AM

you can get the stool test. since the bowels are where the damage is being done, it makes sense to test there. on the website, they even say that you don't need to eat gluten first, as that can cause devasting effects to the person, and the antibodies are usually there for a while. here's the link to read up on it: (excellent read!!!) we are all getting the test done in january.

https://www.enterola...cPages/Faq.aspx
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#11 Kerceli

 
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Posted 26 December 2012 - 04:53 PM

Thanks guys!!!! :)
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