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Scared I Won't Get My Diagnosis


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#1 freeme808

 
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Posted 24 January 2013 - 10:07 AM

Hi all,
So I finally went in to the doctors. My doctor is very compassionate and listened to all my symptoms. He even ran blood tests for me, but here's the catch. He couldn't find a couple of them in the system!!! Thank God however, that EMA and tTG was in there-possibly antigliadin IGA-can't remember(that's the only ones on my Celiac list that was in the system). So, waiting for the results. He did run a few others:ESR, CPR, Vit B12, Folate, etc. They all seem to be okay. Which is good news.

Here's the problem: he recognizes Gluten-Intolerance, but doesn't know too much about Celiac. I think he thinks if you have it, you'd of been diagnosed as a kid. So I asked him about testing for the Genes, and he was very honest and told me that it was over his head. (He and the nurse both mentioned it would be better to go to a Holistic/Naturopath as they are more up to date on food allergies, etc.) Other patients have come in about gluten, and he runs tTG- and that none of them have ever turned it positive, but advises them to go gluten-free and see how they feel. If better, stick to it.

So, as I've been dying to go gluten-free(pun intended), I've been waiting for all the testing to be done. I asked about an endoscopy, but he felt that...its pretty much on the wall, so just go gluten-free and see how I feel. As far as all these little bumps on my skin(all over my body that look like bug bite/little pimple and itch like hell, and pop up from gluten-esp beer!) that I swear it's DH, they didn't seem to phase him at all. Well, I don't think he knew what DH is? Or that It didn't look severe enough. So basically, I'm advised to go gluten-free which is music to my ears! BUT, that's it!?

I received my enterolab kit the same day as my doc appointment(coincidence-I think not! :rolleyes:). I feel I'll be getting more accurate results from them. I also ordered the Gene panel, so that will give me a little more insight. I'm also thinking about going to the Holistic doc with all my results. Actually, I will be. You see, it's not like I'm eager to be diagnosed a Celiac, it's that I'm eager to know if I am or not. I'm also not the only one in my family with all these crazy symptoms in regards to gluten, I'm just the most severe. So knowing will not only bring me assurance, it'll also give my family some insight as well. Cause at the end of this all Celiac, or NCGI...I will be gluten-free! :)

I also mentioned in another post about a mass in my abdomen. Thank God, my doctor felt it(estimated to be 5cm) and will be getting ultrasounds first. I always wonder now, if this mass could have anything to do with my whole ordeal with gluten. I've read enough about Celiac disease to know that:

" If a person with the disorder continues to eat gluten, studies have shown that he or she will increase their chances of gastrointestinal cancer by a factor of 40 to 100 times that of the normal population. Further, gastrointestinal carcinoma or lymphoma develops in up to 15 percent of patients with untreated or refractory celiac disease. It is therefore imperative that the disease is quickly and properly diagnosed so it can be treated as soon as possible."-Celiac.com

Not saying I have cancer, but what ever's in there is serious and will most likely have to be worked on so to speak. :( It's sad too, I've been very aware of the mass since 2009. So time will tell. I just want to know if I have Celiac or not...so sad that it's SO hard to figure out!!!!!!!!

If you've made it through my whole story, thank you very much. Every one on here has been truly supportive and I appreciate every one's input. :) Thank you.
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Taking baby steps. Having a harder time transitioning than I thought.  :mellow:

 


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#2 freeme808

 
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Posted 24 January 2013 - 10:03 PM

Mushroom? Ravenwoodglass? What do you think? :( Sorry I know you guys post a lot, and that you have good advice.
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Need to be sugar, gluten, dairy, & yeast free!

Taking baby steps. Having a harder time transitioning than I thought.  :mellow:

 


#3 mushroom

 
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Posted 25 January 2013 - 01:26 AM

Mushroom? Ravenwoodglass? What do you think? :( Sorry I know you guys post a lot, and that you have good advice.


I am not sure where you live, freeme, but it appears that the lab the doctor uses does not run the DGP test, IgA and IgG, which is the newest test and the one most predictive of celiac IMHO. I base this on the fact he could not find it on the form - or maybe he was using an out-of-date form and could have written them in. It will be interesting to see what results the other tests prodouce. Did he order the total serum IgA (sometimes referred to as immunoglobulin).

Sorry to hear about your abdominal mass. Hope you can get in soon for an ultrasound on that. It is probably not serious - at least try not to worry about it.

You say you live on an island. Is there someone on that island who is a dermatologist, or a boat you could take to get to a dermatologist? Because if you were to get a skin biopsy of clear skin immediately adjacent to one of your skin lesions and that came up positive, that would be a diagnosis of celiac disease. But it must be an active lesion so you would need to do it right away before the gluten antibodies leave your skin when you go off gluten.

I take it this doctor of yours is not interested in referring you for an endoscopy with biopsy if your blood work comes back positive?? Too exotic for him, I gather??

Altogether, not a very encouraging report on the state of celiac diagnosis. :angry: You would probably be better off with a naturopath. I am not certain if the state you live in permits naturopaths to order blood work; maybe she/he could order the DGP tests for you (deamidated gliadin peptide). Certainly you will get someone who knows a lot more about the importance of food to the body.

Best wishes on your test results when they come through. Do let us know what they are, along with the reference ranges from the lab (i.e., get a hard copy of the results from your doctor). :)
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

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Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

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#4 ravenwoodglass

 
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Posted 25 January 2013 - 06:45 AM

You got a pretty complete answer from Mushroom so I don't have a lot to add. Do be sure if you see a derm for the rash that you specifically mention testing for DH as they need to do tests that will be looking for it or they won't find it. Try not to worry too much about the 'mass'. I know easy to say but not to do. Hopefully the ultrasound will give you some clear answers on whether that is something you need to be concerned about or not. There are many of us here that went a very long time undiagnosed but didn't develop cancer. Plus if you do have issues with gluten your chances of developing the cancers that we are most prone to goes down each year you are gluten free. By the time you have been gluten free for 5 years I have read that your chances of developing one of those cancers goes down to the same as the non-gluten sensitive population.
Do let us know how the tests come out and after all celiac related testing is finished do give the diet a good strict trial to see if it helps. Also if your insurance will let you self refer to a GI doctor you may want to see if you can get an appointment. If your insurance demands a referral from your GP then go to him and tell him you want a referral, period. If he won't give you one find another doctor if you can.
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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)

#5 freeme808

 
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Posted 25 January 2013 - 09:18 AM

You guys are so awesome, thank you for responding so quickly. :) Im from Hawaii, not too exotic. ;) But, I always felt things were a little slower over here as far as the medical field goes. Yeah, the tests I was asking for weren't in the computer. We did order the Immunoglobulin, it's in the normal range:
Results:
My IGA 166.0
Standard Range:
69 - 309 mg/dl
Im still waiting for a couple more to come back. He just felt that why do all those invasive testing, when it's clear that I have symptoms so go gluten-free. But I think he felt that way because he thinks its gluten intolerance. I think he was pretty sure that I didn't have Celiac. Heck, if I turn the TtG positive, who knows what he might think? Maybe see that I do have a big problem. Oh yeah, he also said that the GI docs don't really know too much about celiac as well. ERR! At least he was honest. So with that said, I really don't have any faith in the derms either. :angry:

We actually have quite a few naturopaths here. I've been referred to a really good one from a family friend. He's known for figuring out what other doctors couldn't. I actually wanted to go to him in the first place, but as we have insurance...I thought I'd push that as far as I could. My doctor is totally fine with me going there and then if there are any tests that need to be done, he said he'd order them for me. But I know now, if it's blood then maybe not as some of the tests aren't in the system.

Im so close to almost giving up, and just starting the diet already. I'm miserable. I've put on more weight. I've been in a stand still waiting for my diagnosis cause Im so brain fogged, fatigued, and in pain that I don't do anything except things around the house. SO not the way I should be living my life. Hell, I live on an island..I should BE outside! :( So ladies, Im really trying to hang in there. I think my last attempt would be me taking my results from the doctors and enterolab to the holistic guy. Free consultation, so why not give it a shot? I just have to see if I can wait that long. Enterolab take 3 weeks to come back. Haha, maybe I should just go see him-results or not...just see what he has to say. What he think I should do.

Thanks for listening :wub:

:ph34r: And the mission continues...
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Need to be sugar, gluten, dairy, & yeast free!

Taking baby steps. Having a harder time transitioning than I thought.  :mellow:

 





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