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Testing: When And How
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At 28, I finally found out I have celiac. Now my worry is how to handle it with my children. I'm convinced both of them have it but neither show strong signs. I see symptoms but that is because I'm looking. Neither child is sickly, but for example, my 9 mos old son never, and I mean never, spits up unless he has something w/ gluten and my 6 yr old is frieghtenly pale, even for an Irish girl :P . Her moods are starting to get a bit unruly and she is just beginning to complain about belly aches. Why aren't there tests that can diagnose without having to wait for damage to happen first? Just tonight I saw in some posts, there's a genetic test. Is this common and I just didn't know about it or is it still a work in progress? I heard of genetic testing for neurological disease when I was pregnant (also just found out Huntington's is in my family) but no one ever mentioned genetic testing for celiac. I just feel so frustrated and I want definite answers, which seem impossible!! I just want to make the best decision for my children and I feel like I don't have enough information to made a wise decision. Thanks for any advice.

---Suzanne

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Hi Suzanne:

I went the conventional route looking for a dx, I went through all sorts of tests and everything came back negative. I was sick of being sick and being told that I had IBS that I finally ordered a stool panel test from Enterolab . This way of testing is more sensitive than blood and a more accurate way of testing.

After I was dx my daughter and I both went gluten-free but then I decided to have her tested as well, her test came back positive too. I was happy that she did not have to endure all the tests that I did and that after going gluten-free she was like a new kid.

Good luck to you and your children! :D

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Your 9-month-old is too young to be tested accurately. Your daughter should be tested immediately. Personally I'd go the conventional route starting with a FULL celiac panel. Iga, total Iga, Igg, and Ttg.

To my mind, the gene test is only moderately useful. If you don't have the genes then you know you don't have and can't get celiac disease. But if you do have the genes that doesn't tell you whether you have it or not. Many people have the genes but don't have celiac disease.

richard

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Spitting up, paleness, moodiness, and tummy aches are all mild symptoms of celiac. Since you have celiac, have your doctor order the gene panels for both kids. It is hereditary, and it will make a difference in their lives. Enterolab has a stool test that is non-invasive, and very accurate. Yes, it is expensive, but not as expensive as repeated trips to the doctor! Since you are seeing signs in your children, then it is wise to get them tested. Using Enterolab, you can also take them gluten free right away. The sooner you know and start treatment, the healthier they will remain!

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It is completely untrue that many people have the gene for celiac disease but don't have the disease!!! If you have the gene, you have the disease. You may not have damage to the villi in your intestine, but you have celiac disease! I respecfully refer you to EneroLab's website and Dr. Fine's online lecture in which he explains how EARLY INTERVENTION is the point of these genetic tests, before any damage or symptoms are apparent. There may be other diseases in which a gene's presence doesn't necessaily mean you will get the disease, but celiac disease isn't one of them. I repeat, if you have the gene, you must go gluten-free!

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Dr. Fine is at odds with other well-known experts on this point.

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Two separate board-certified pediatric gastroenterologists on staff of our local children's hospital as well as my own doctor recommended genetic testing for me and my family. Dr. Fine may be a controversial figure, but genetic testing is regularly relied on by the mainsteam medical community. And all three docs said a positive result means no gluten for life.

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For the above posts talking about Dr. Fine. This is what is says on Enterolab website about Genetic Testing. He does not say that you have celiac disease if you have the gene. But Gluten Sensitivity is stil possible...Read the highlighted part.

I have also read his lengthy essay on the subject and he does not state that you have celiac disease if you have the gene.

What role does genetic testing play in the diagnosis of gluten sensitivity?Currently, tests are available to detect the genes that control the immune system's reaction to gluten. These genes are called human leukocyte antigens or HLA. There are several types of HLA genes within each person. It is a particular type called HLA-DQ that is most useful in the assessment of the probability that a person may be gluten sensitive. The reason gene testing assesses probability rather than disease itself is because some people have the genes for gluten sensitivity but have no detectable evidence of the immune reaction to gluten or have no symptoms. In such people, gluten sensitivity is still possible but the probability (or in other words the chances or the odds) is lower than in a person who may be having symptoms attributable to gluten or that has antibodies detected. HLA testing is most useful when there is diagnostic confusion about whether or not a person is gluten sensitive. Such confusion often stems from one of the following: atypical intestinal biopsy results, the presence of associated diseases (such as microscopic colitis) that may mask the expected improvement of symptoms when gluten is withdrawn from the diet, negative tests for gluten antibodies in the midst of suggestive symptoms or signs of gluten sensitivity or celiac sprue (see the paragraph below to understand the difference), or when there are no symptoms at all and the person or the doctor can hardly believe that gluten sensitivity is really present. Other situations that HLA testing is useful is when a person is already on a gluten-free diet, and for testing family members (particularly children) for the odds that they have or will develop gluten sensitivity.

Just thought I would clear up the misinformation. You can even e-mail him if you want and he will write back himself with the answer. Hope this helps.

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One more note...if you have the gene, but don't have celiac disease, gluten could trigger celiac disease at some point in your life. I found out about my gluten sensitivity because I developed symptoms of Hashimoto's. I am sure the gluten in my diet triggered the Hashimoto's because since going gluten-free my symptoms for Hashimoto's Hypothyroidism have gone down. I however am still waiting on my test results from Enterolabs. I e-mailed my celiac disease blood panel results to Dr. Fine and he said I don't have celiac disease but am Gluten Sensitive.

All this to say havimg the gene does not mean you have or ever will have celiac disease, but at the same time it could be triggered at some point. Thus going gluten-free is a good prevention because you may be asymtomatic with celiac disease but it may trigger an autoimmune response such as thyroid problems, diabetes, MS, arthitis etc. as I believe it did with myself and my Grandfather.

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How will your blood tests show if you are just gluten sensitive, or actually have celiac?

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Here were the results of my blood test:

Antigliadin Abs, IgA was Negative

Antigliadin Abs, IgG was 34 H Units

t-Transglutaminase (tTg) IgA was Negative

Reticulin IgA Ab was Negative

Reticulin IgG Ab was Negative

This was the reply Dr. Fine gave me when I e-mail the results to him:

Your positive antigliadin antibody is a sign of gluten sensitivity. Going gluten free will indeed prevent celiac disease and help your thyroid maybe to the point of returning to normal.

He also gave me this link http://www.enterolab.com/Essay to his essay which is were he talks about early diagnosis. I ordered the stool and gene test because I want to know how much if any damage has been done to my intestines. The essay gets a little technical in places, but he is very good and explaining even the technical stuff in layman's terms. Hope this helps.

I also have two childern. One 7 months and one 2 1/2 that I am trying to figure out what I am going to do with them. I have actually put the two year old on the gluten-free diet and am going to be careful to make sure the 7 month old doesn't get any gluten for awhile at least. We have to figure out if insurance will pay for the Enterolab tests before I can get the 2 year old tested.

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I guess I forgot to answer your question specifically...

Blood tests can't always confirm gluten senstivity or celiac disease which is what Dr. Fine explains in the essay, that is why he recommends the stool test. But in my case the main blood test for celiac disease which is tTg was negative but one of the Antigliadin antibodies was positive. Thus not to the point of celiac disease but on the way there.

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Thank you for the info, Taneil...I guess my doctors were recommending that if the gene was present we go gluten-free and not tempt fate! Good luck with your test results...waiting is the worst part.

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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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