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Testing - Is It Necessary?


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#1 eleanorj

 
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Posted 02 January 2013 - 10:33 AM

I suspect my 9 y.old to have celiac or at least an intolerance to gluten. His stools have never been right, he had giardia at 20 mo., was diagnosed with stomach ulcers around age 2. He often complains of headaches and knee pain in his joints (we always blamed growing pains, but he grows once a year, and pain are on a monthly basis). Has itchy dry skin, a couple years ago he had a bad rash on his thighs that comes back every once in a while. He is a very moody/high irritability child, one minute he's the sweetest child, the next he screams and slams door. With all that, we are putting him on a gluten-free diet, we gave him a week notice, gluten will be gone on Monday. At this point, we will be telling friends/family/school that he has celiac because I feel that giving him the diagnosis will help enforcing the diet when we're not home.

With that said, I have been looking at testing and I'm wondering if it is at all necessary? I have no desire to put him through two endoscopy/biopsys, especially if they're not even that accurate. I can live with bloodwork or any non-invasive testing, but it is all so expensive and mostly uncovered by insurance. He is going on the diet and we're hoping to see improvement with all issues stated, and I feel that testing wouldn't add anything except knowing that he has it rather than thinking/believing.

So, I am seeing a few company names removed and I'm unsure if it's ok to ask, but who would you recommend to do such testing?
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#2 mushroom

 
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Posted 02 January 2013 - 11:12 AM

Hello, and welcome to the board.

Before you take him gluten free, there are a couple of things to consider. He is only 9, and has a lot of years of schooling ahead of him. Most schools, before they will make special provisions for him will require a formal diagnosis from a doctor (in writing) that he must be gluten free. It is for children, especially, that the diagnosis can become important because of this. You should at least have the blood test done, and for this he needs to be still eating gluten, right up till the time of the blood draw, because the antibodies measured start to fade upon withdrawal of gluten. Any doctor can order a celiac panel:

Anti-Gliadin (AGA) IgA
Anti-Gliadin (AGA) IgG
Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Deamidated Gliadin Peptide (DGP) IgA and IgG
Total Serum IgA

Convince your doctor to order all the tests, not just the tTG, or the tTG and Total IgA, because he may be negative on one test and positive on another, and it only takes one positive for a diagnosis. The DGP is proving a most useful addition to the panel, especially for children. Some doctors will make the diagnosis now on the basis of positive blood work; others will only do so with an endoscopy. Where did you get the idea that you must have two endos? Only one is required. But whether or not he has the endo is entirely up to you. If he tests positive you can get a copy of his test results to show the school and that may work, even if the doctor will not make a formal diagnosis. Some doctors will diagnose on the basis of symptoms, positive blood work, resolution of symptoms on the diet, and genetic predisposition. It really all depends on the doctor and unfortunately there is no way of knowing, except by asking, what the doctor will require to make a diagnosis.

Also, may I suggest that you do not make the diet sound like some kind of punishment ;) In fact, I would introduce it without even telling him initially, so that he can see that he will still have delicious food without gluten. After a week of gluten free dinners you can ask him how he is liking his meals? And explain why you are cooking that way, etc. and the necessity for him to avoid the foods he must. :)

Good luck on the testing; I hope it provides a definitive answer for you.
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#3 eleanorj

 
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Posted 02 January 2013 - 01:13 PM

Thank you for your input, just called the doctor and they're going to let me know if he needs to be seen before they order the tests and I will make sure they order the full celiac panel as well. It makes sense with him being a child.

And he has no problem going gluten-free, when we first told him he wasn't happy, but I went to the library, got a bunch of cookbooks, one explained well what celiac is and he's looked at them. It makes more sense to him now, and he also saw all the color pictures of cakes, and cookies, and bread. He's excited and can't wait to start! Actually, he'll be upset if we have to postponed Monday, but I'll make sure he is tested first. Thanks
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#4 eleanorj

 
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Posted 07 January 2013 - 09:44 AM

I'm waiting for the doctor to call me and tell me he got the test results, but.... received an email this morning telling me they were posted online so I had to check ;) The first 2 sets is what he ordered for the celiac panel and the last set is the only abnormal number in the CBC. He also ordered the top 8 food allergy group, still waiting on those, he said it could be a week. Only one is a positive and from what I'm reading, it's not the definitive factor of celiac and it is a very low positive, but the lymph and Abs lymph are high which could be a sign of inflammation. So, what do you all think? Would my son receive an official celiac dx based on those? What other test should be ordered? I'll give the dr a call tomorrow if I don't hear from him by the end of today. Already made a GI appt, earliest one is in a month. Thanks!
Component Your Value Standard Range Units Flag Gliadin (Deamindate Peptide) Ab (Iga) 5 0 - 19 units Gliadin (Deamidated Peptide) Ab (Igg) 21 0 - 19 units
A
Component Your Value Standard Range Units Flag TTG IgA <2 0 - 3 U/mL TTG IGG 2 0 - 5 U/mL
Component Your Value Standard Range Units Flag IGA 149 62 - 236 mg/dL

CBC - Abnormal results Lymph 52 20 - 47 % A
Abs Lymph 3.7 1.1 - 3.1 x10E3/uL A
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#5 eleanorj

 
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Posted 07 January 2013 - 09:59 AM

This should be easier to read, I copy/paste the results from the website and it didn't copy in the nice format!

Component Your Value Standard Range Units Flag
Gliadin (Deamindate Peptide) Ab (Iga) 5 0 - 19 units
Gliadin (Deamidated Peptide) Ab (Igg) 21 0 - 19 units A
TTG IgA <2 0 - 3 U/mL
TTG IGG 2 0 - 5 U/mL
IGA 149 62 - 236 mg/dL

CBC - Abnormal results only
Lymph 52 20 - 47 % A
Abs Lymph 3.7 1.1 - 3.1 x10E3/uL A
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#6 nvsmom

 
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Posted 07 January 2013 - 07:53 PM

That looks like a positive DGP IgG to me. It's not excessively about that cutoff line, but I always wonder who decides that cutoff is best for everyone. I figure that a positive is a positive, and that test is considered pretty specific to celiac unless I'm mistaken. i would consider it a celiac diagnosis and go gluten-free regardless of any further testing you may choose to do.

Many doctors will diagnose with just the blood work (mine did) or the blood work and a positive reaction to the diet. If your doctor won't "officially" diagnose your son, and it's important to you,perhaps you can find another who will based on the test results. We homeschool our kids, and pack lunches when ever we are out (few days per week) so I don't know what consessions he'll need in school. I've seen many people mention needing it for college but up here (Canada) it's different and most people I know avoided dorms and cafeteria food on a daily basis... if possible.

I did want to add that my 10 year old just went gluten-free after negative blood work and he's had great results. He's growing a bit, is much calmer and easier to teach, and he rarely complains of the stomach aches and headaches that he used to have. He also voluntarily gave up milk after a few symptoms still lingered and is doing great with it... better than many adults would be.

Be aware that there could be a withdrawl period if he goes gluten-free cold turkey. Moodiness, headaches and complaints could increase for a couple of weeks. We bought some extra gluten-free treats/comfort food to eat during that time... it help me to know I wasn't going to do without treats.

Good luck to you.
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#7 eleanorj

 
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Posted 08 January 2013 - 06:20 AM

Thanks, that's my thinking, just requested to speak WITH the dr, doesn't sound like he'll be giving the dx, because the note says he's not concerned so I'll have to convince him ;) He packs his lunch everyday as well and I doubt the teacher will require a note to stop giving him treats in class. Someone suggested that he sees an allergist and be tested for heavy metals. I never pursued his issues before, but now that I've started, I'm not stopping until I get answer. Hopefully the pursue won't be too pricey.. yikes! A few days ago, he asked me if I could, one last time before starting the gluten-free diet, if I could bake my bread. I hadn't done it in a while, so I did served with homemade toscana soup and finished by dipping it in maple syrup. I think that made him happy and made him realize that I do care about the fact he won't be eating gluten anymore.
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#8 nvsmom

 
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Posted 08 January 2013 - 08:48 AM

My kids really like this bun recipe. We use coconut flour instead of almond due to allergies, and for a treat we add a swirl of cinnamon and brown sugar, or coconut. Quick and easy.
http://www.celiac.co...ead-in-minutes/
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#9 eleanorj

 
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Posted 08 January 2013 - 10:31 AM

This sounds yummy. Sooo.. spoke with dr who is dead set that he doesn't have celiac, even spoke with the GI dept I made an appt with so I'll doubt I'll get anywhere there as well. Next step he says would be genetic testing but since it involves more lab, GI dr might do more lab as well, so we'll wait because my sweet boy got a very nasty bruise off the blood drawn last week, don't want him poked and traumatised too much. He did say to go ahead and start the diet now then we can discuss with GI dr how the past month has been with changes or anything else. He did say that the rest of the testing shouldn't matter if he's off gluten. In order to make my son feel that he is somewhat in control of teh situation, I will give him the option as to when he wants to start the gluten-free diet, anytime between now & Monday, in the big picture, 5 days won't make a difference but in his, control will make ALL the difference. Thank you all :)
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#10 cavernio

 
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Posted 08 January 2013 - 05:49 PM

Well something's wrong with him beyond his symptoms, his lymphocytes are too high too. Any mention of that from the doctor??

Just don't get too caught up about gluten to overlook that there could be something else wrong instead/also. Dead set against celiac disease doesn't make any sense to me either. As to worry about invasiveness, I don't know what you've heard about small intestinal biopsies, but I never felt mine and hardly remembered the procedure. Needles are far worse IMO.

Another opinion, I wouldn't be worried about heavy metals just yet either, especially from what I've heard about how they may be tested and the accuracy of such things. Just because your doctor doesn't believe it's celiac disease or gluten related (despite a positive test....), doesn't mean he/she is a complete moron or that you should start looking to alternative medicine right away.
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diagnosed Jan 2012, bloodwork only
June 2012 positive visual of celiac disease from gastroscopy

#11 eleanorj

 
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Posted 09 January 2013 - 08:54 AM

I know, dr said he is not worried, he could have just came off an infection, his glands were slighty swollen the day of the lab so that could just be it. I'm not dead set on celiac but I am on the fact that now that we started digging, I'm not going to stop until I get an answer, so we'll see the GI suggestions, until then gluten-free diet is starting tomorrow. As for endoscopies, the fact is that most people performing those procedure are usually interns because they are considered rather "safe" procedures, but because interns are learning, mishaps are more likely to happen like a punctured something as a results. When my son saw the GI dr several years ago (he was only 2), I was seeing the head of the dept but the intern was always seeing him first. When it got time to schedule the procedure, I asked him if he was going to perform it and pretty much told him I wanted him to do it and his replied was simply "If that's what you want I will do it" in other words, he wasn't planning on it. So not, they are not invasive, they are just performed by learning folks. If he really wants to go in, I'll ask him about the "camera pill" they do nowdays, of course he couldn't do a biopsy, but I think that it is meeting ground. We'll see.. wish me luck as we try the new bread tomorrow... :)
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#12 gatita

 
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Posted 09 January 2013 - 09:57 AM

Also, for what it's worth, if you really need a piece of paper from an M.D. saying he must be gluten-free for life, Enterolab provides one if his anti-gliadin antibody stool test is positive.

I wanted the paper and got that before my own doc came around.
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#13 eleanorj

 
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Posted 10 January 2013 - 07:48 AM

Gatita, thanks, I'll look into it. I know those test can check for a lot more too, I've thought about them, but the thoughts of digging in his stools.. yuck, I had to do it when he was still in diapers, made the job easier while still very unpleasant ;) I'll try to get the GI to order some stool test, I know I can get some covered by insurance before going the private route. Can't wait to hear what he thought of his gluten-free sandwich today, we bought Udi's bread, it smelled so good :)
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#14 mizunosport

 
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Posted 10 January 2013 - 06:21 PM

Which test do you order from the lab? There are several on their website.
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#15 gatita

 
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Posted 11 January 2013 - 11:16 AM

I just got the IgA anti-gliadin antibody test.

And yes, it was pretty interesting taking frozen poop to the UPS place.
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