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Genetic Testing
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Hello everyone!! Still on my journey to figure out what's going on with me! I've had a positive gliadin IgG test, negative gliadin IgG, Negative tissue transglutaminase IgG/IgA... Negative biopsy, it showed inflammation and lymphocytes infiltrating the epithilium but no issues with the villi... After I went gluten free for a month and felt great... Reintroduced and all my aches pains and respiratory issues came back I didn't think I had any GI issues but when I reintroduced I realized it made me constipated.... Now I had the genetic testing done and my HLA-DQB1*02 and HLA-DQB1*03:02 were negative but HLA-DQA1*05 is positive. Report says this is rarely observed in individuals with celiac and that it is only mildly supportive of a clinical diagnosis of celiac disease..... I know I should just go gluten free cause it makes me feel better... But I would have really loved a yes you have this or a no you don't

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Look into it, isn't this a phase 1 presentation of celiac with lymphocytes and inflammation being present?  IT is my thought that you caught it early before the damage to the villi is major, or they may just have took the biopsy's from a healthier place.  I still am trying to think of the name of the scale that phase 1 refers to.  Aside from looking it up yourself using a pathology report you can seek a second opinion about it.

 

Marsh Scale.  Sorry, I am suffering from too much sedatives in my colonoscopy the other day.  They had to use extra!

 

Best wishes for healing.

 

Dee

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It's possible that you have non-celiac gluten sensitivity (NCGS).  Some doctors think the AGA tests can be positive for those with AGA some of the time, although not as much as with celiac disease.  Those with NCGS will not have major villious atrophy but may show some changes (although I think it sounds like early celiac disease).  Only half of those with NCGS will have the DQ2 and DQ8 genes unlike the 97+% frequency in those with celiac disease. NCGS is about 6 times more common than celiac disease .

 

Unfortunately the only way to diagnose it is with a positive response to the gluten-free diet.  If all of your testing options are exhausted, you might as well start the diet. Keep a food and symptom journal and discus it with you doctor, and he may diagnose you with NCGS.

 

And son't let anyone tell you that NCGS is a lesser disease than celiac disease.  Almost all of the symptoms are the same, and I've talked with many with NCGS who have had more extreme reactions to gluten, but they are less likely to develop other autoimmune diseases, and don't get the dh rash or intestinal damage.  They can both be nasty diseases.  :(

 

Best of luck to you in whatever you decide to do.

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SPinch03 ~

 

I am on the journey with you.

 

Had an endo with a colonoscopy on May 8th. All biopsies were "normal" and my doc took quite a few & then requested they be "sliced".

 

Took the transglutaminase blood tests previously to having the endo (while still eating gluten). IGA was elevated, IGG was in normal range. 

 

Asked for genetic marker tests to be done. Both my gastro & primary docs balked but ordered them up for me anyway. After 4 weeks, I'm still waiting for my results to be read. They have arrived at both docs' offices but my primary doesn't know how to read them, so is not willing to show me the results. She's waiting on my gastro's interpretation but he's been on vacation for the past week. My primary only works three days a week, so between the two of them I've gotten no answers to anything! It's very frustrating!  

 

In the meantime, I've been eating gluten-free since my colonoscopy prep May 7th and am feeling so much better! Like you, SPinch03, I too would like to have some kind of diagnosis from all of these tests! Chances may be that I am NCGS but I'd still like to rule out celiac, if at all possible. If I have the gene marker(s), I want my family to know so they can be tested. That's part of the reason I am trying so hard to get a definitive answer.

 

Unfortunately, I'm not feeling very confident in my two docs right now and am thinking of taking my test results to a doc who deals with celiac more often. I live in a small area, so we don't have the specialists that the larger areas do. Can anyone here recommend a knowledgeable celiac doc in CA? I live along the Central Coast & can travel in either direction. Thanks!

 

Good luck, Spinch03. Update when you can.

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Can anyone here recommend a knowledgeable celiac doc in CA? I live along the Central Coast & can travel in either direction. .

You'd probably get more help if you start a new thread in the doctors section. Good luck to you!
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Having the gene for celiac does not diagnose it anyway.

 

A negative biopsy and a negative blood test are far more telling. 

 

 

Up to one third of the U.S. population 
has the genes for celiac disease, but it 
is thought that only 1-4% of them will 
actually develop the disease at some point 
in their lifetimes. This means that people 
with DQ2 or DQ8 can develop celiac 
disease, but the vast majority of them 
aren’t destined to develop it. 
 
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You'd probably get more help if you start a new thread in the doctors section. Good luck to you!

Thanks for the suggestion, I will head over there.

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    • Hi everyone, I've been reading this forum sporadically and have some questions of my own. I'm in my 40s and was diagnosed with celiac last December by biopsy and blood work after months of tests by my primary and then a gastro. My husband, around the same age as me, was dx'd with stage 4 cancer a month later, so admittedly it's took me longer than I'd have liked to learn about celiac. Now I feel pretty on top of my diet. I mostly make my own food - proteins and veggies, with some certified gluten-free snacks in the mix - and am pretty strict about what I will/won't eat at friend's houses or in restaurants (I prefer to go to dedicated gluten-free kitchens whenever possible). I'm doing okay on the diet, but still getting glutened every so often, usually when I let me guard down outside the home. I also periodically see my primary and a naturopath (who happens to have celiac!), but still, I have many questions if anyone would care to answer:

      -FATIGUE. I'm still so tired, fatigued so much of the time. My doctors blame this on the stress of my husband's diagnosis and my periodic trouble sleeping. But even during weeks where I'm sleeping enough (8-10 hrs a day), eating right, exercising as I can, trying to keep stress at bay, I'm still so bleeping tired. Maybe not when I wake up, but by late afternoon. Often my legs even feel weak/wooden. Has anyone else experienced greater fatigue early on after being diagnosed? This will pass, yes? I know I could cut out the sweets and that could help, but also, being a caregiver is hard and sometimes it's nice to eat your feelings between therapy sessions.  

      -SYMPTOMS CAUSED BY FATIGUE? Sometimes I'll have other "feels like I've been glutened" symptoms if I haven't gotten enough sleep, though I'm trying so hard to sleep at least 8 hours a night these days. Hasn't happened in a while thankfully, but there was a point this summer where my insomnia was bad and my arms were achy and I had some crazy flank/back pain I'd never experienced before. For weeks. Doctor ordered me to sleep sleep sleep, taking Benedryl if needed. I did, and the symptoms went away, but weird, yes? Has this happened to you? I ask because I want to make sure I'm getting all strange pains tested to the full extent if there's a chance it's something other than celiac. I do sometimes still feel that strange side stitch after a CC incident.

      -SKIN PROBLEMS. I have had a smidge of eczema since I was a teen and it - and the dermatitis herpetiformis I've acquired with my dx - are out of control right now. I recognize the connection with stress, but also, has anyone found any great natural remedies for DH to stop the itching? I've tried so many useless ointments and medicated creams, a number of them given to my by a dermo months ago. I see my naturopath this week, but thought I'd ask here too.

      -MOSTLY gluten-free KITCHEN GOOD ENOUGH? My husband is supportive of my diet and mostly eats gluten free meals with me, but we still keep a gluten-y toaster for him and the gluten-y dog food in a corner of the kitchen and he still makes the occasional meal with gluten for himself on his own cookware (ravioli, pizza, mac n cheese, etc). Or sometimes I make eggs/toast and the like for him when he's too sick to move. Otherwise, we're militant about how we cook, which cookware we use, etc. He even has a kitchen nook off our den where he makes sandwiches. But sometimes I wonder if having two separate sponges in our shared-ish main kitchen is enough and I should just banish all gluten whatsoever from the kitchen. I can't be the only one with a mixed kitchen, right? How do you do it if you have a mixed-eating family?

      Thank you so much!  
    • Hang in there!  Count your blessings.  Do something you like to do and relax. I know that is hard to do as a young mother (as I sit here in the kitchen sipping coffee quietly as my teenager is sleeping in after a late football game last night where she marched in 90 degree plus weather in full uniform).   But seriously, take a few minutes to relax!  
    • Meredith, this is very true. A colonoscopy is for diagnosis of the lower intestine, endoscopy for the upper intestine.  How did your doctor interpret the tests? I suggest you read the link Cycling Lady gave you because it contains a lot of good information. 
    • Sorry, but this product (supplement) is not even certified gluten free.   Seems odd that a product geared to Non-Celiac Gluten Intolerance would not take the extra step of getting certified.   I guess I am a Nervous Nellie, especially after the reports that several probiotics were contaminated with gluten.   https://celiac.org/blog/2015/06/probiotics-your-friend-or-foe/
    • Thank you for posting that. I've had a lot of that bloodwork done and everything is normal. At the peak of this belly bug I had blood work done and my white count was fine. I think it's just my health anxiety scaring me into thinking this is something scarier (to me) than celiac. Maybe the anxiety will subside once I go gluten-free. The anxiety is brutal.
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