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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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wembles

20 Month Old...starting Diagnostic Process

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Hi everyone,

I'm new to posting here, but have spent many an hour reading through posts :)

My youngest son is 20 months old. He is very small-not on the growth charts, which actually doesn't bother me; but what does concern me is that he has not grown, either height or weight, in almost 9 months. At our recent well visit, the doctor offered to bring him back every 2 weeks for weight checks...I declined. If he hasn't gained in 9 months, I think bringing him back in 2 weeks is a waste of time. I pushed for a referral, and got one to a nutrition clinic.

I have suspected celiac runs in my family for awhile--my mom had her gallbladder removed, IBS, migraines, osteopenia, and the beginnings of arthritis. Her sisters both have multiple children with thyroid disease. "Bad teeth" run in my family (including me). Other, in either myself, parents, or brother: chronic constipation, inability to gain weight, canker sores, GERD (and barrett's esophagus), high cholesterol.

As far as my son: eczema, no growth, has never slept through the night, intermittent constipation and pale stools, irritable.

The nutrition clinic ran the following tests. The PA called us with the following results today:

CBC (normal)

Comp. Metabolic Panel: normal

Thyroid Stim. Hormone: normal

T4: normal

Endomysial AB, S (IGA): negative

TTG IGA: negative

Iron and Irn bind Cap Panel: unsure...she didn't mention this on the phone

Ferritin: 11.7 (she said it should be at 30 and this indicated iron deficiency)

Sed Rate: unsure

Vitamin D: will get results from this on Monday

The deficiencies were blamed on me for continuing to nurse (I still nurse him 2-3 times per day), which I think is bogus. We kept a diet log for 4 days, showing that he eats like a horse...way more than recommended serving size for a toddler. We eat meat at least once per day, fruits and vegetables at every meal, yogurt and cheese, and very few processed foods. We also eat a lot of whole grains. The PA's recs were:

1. Cut water intake to 4-6 oz. per day. (for the record, I think this is crazy).

2. Increase cow's milk intake to 16-24 oz. per day. (he hates milk. but, he eats almost 3/4 cup yogurt for breakfast everyday, plus cheese and other sources of calcium throughout the day).

3. Take Flintstones vitamin and Ferisol (1/2 ml 2x/day)

4. Supplement vitamin D (she will call with rec on Monday, following the results.)

5. Offer Carnation Instant breakfast, fortify food with mayo, sweetened condensed milk, cream, etc.

I guess I am just frustrated because my concerns were NOT that he isn't taking in enough calories (he is taking in MORE than enough), but I am still told to supplement calories! And, won't increasing milk intake make it difficult to absorb iron? Also, I know the blood tests for celiac aren't always accurate in young children, but do you think I should pursue further testing or just wait it out?

I know this is long. I do appreciate any thoughts/input/or just commiseration :)

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Welcome to the board, wembles.

Diagnosis cam be a very frustrating process, and I am sorry you are having difficulties finding out why your son is not growing. It is very hard to diagnose celiac disease in toddlers Your son sounds a lot like my baby brother; and he was never even tested. As it is, they did not do a full celiac panel on your son, which should contain:

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

The total serum IgA is important because you need to know if he produces normal quantities of antibodies and it acts as a control for the other tests. If he is deficient they need to run the IgG versions of the tests because the IgA versions are invalid. The Deamidated Gliadin Peptide is an important one to run for small children as it is very specific for celiac, and is often positive when the others are negative. You only need for one of the tests to be positive. If I were you, I would ask your doctor to run the tests in the panel that have not already been run.

Certainly, your family history does sound suspicious for celiac, and his failure to thrive is worrisome, especially in a normally hungry child. I do not agree with the PA's dietary recommendations either. I think she does not understand the nature of the problem. Make sure you get a result for the sed rate as this is a measure of inflammation in the body. Also the Vitamin D as this is so often deficient, along with iron, in celiacs.

Can you perhaps get a a referral to a pediatric GI?

Hang in there and stick with it until you get some answers. I don't believe it is a good idea to ignore it for a while and hope it will get better. Or to just supplement without knowing why he is deficient. Perhaps you could keep a food log to show to your doctor how much he eats, including portion size, so that he understands it is not lack of nutritional intake.

Keep in touch and let us know how you are getting on. :)

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How cute. They seem to have mistaken your human child for a baby bovine calf. :angry:

If you can get them to redo some tests that they missed (see Mushroom's post) and if you do get a referral to a pediatric GI eventually, keep him on gluten until the testing is finished. However, because testing is not completely accurate, esp. in younger children, when it is over, if you don't have the diagnosis, you can still self- test a gluten free dietary challenge, and see if that improves his symptoms. There is also non-celiac gluten intolerance, where one gets the symptoms that are relieved on a gluten free diet, but still never does get the positive test results.

You can search for the latest articles linking thyroid disease and celiac and print them out, that family medical history is very relevant, but not all docs and certainly not all nurses/PAs are up to speed yet on the common genetic relationship between incidences of type 1 diabetes, thyroid disease, and celiac in children. Just like a lot of them can't connect liver and gallbladder problems, bone loss, insulin resistance, and acid reflux in adults with celiac, either. Hey, inheritance runs in families ! Who knew ? (sarcasm :wacko: )

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I agree with the pp's and your mommy instinct. I especially think the knocking your continued breastfeeding to be the ultimate in ignorance. Clearly, the nutritionist thinks that HUMAN milk is no good for your HUMAN child. As takala says, maybe she mistook your child for a cow. Ugh.

You should definitely pursue full blood work, but because he is so young there's a real chance blood work and/or biopsies could come back negative, even if he has celiac.

I would stick the testing / referral game out for a bit (personally I'd put a three month cap on it), then if no answers have been found, I'd try him on a gluten free diet to see how he responds (minimum of 3 months gluten-free, preferably 6 months). I'd get the doctor to acknowledge the gluten-free diet trial, and have his weight / height / vitamin and mineral levels tracked by the doc once per month. If gluten is his problem, and he responds favourably to the diet, then at least there would be documentation in his medical file stating as much.

Good luck however you choose to proceed, and keep us posted!

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Yeah, if they want to blame a 20-month old's nutritional deficiencies on breastfeeding 3-4 times a day... well, I'd kindly trash any paperwork they gave you (other than test results) and find a new dietician/PA. Seriously, that is antiquated, old, and not just unproven, but contrary to proven science. And makes my blood boil. /rargh!

Testing in this age is troublesome already, and they didn't run a full panel, as has been noted.

I would encourage two things:

1) See if you can get a referral (if you need one, if not, just go) to a pediatric GI in the area that specializes or sees a lot of celiac disease patients. That means you have to ask around to local people to find such a doctor; don't rely on your current provider to succeed here.

2) Try the diet anyway - after you do any additional testing if you are going to do it. One important caveat- if you are going to take your little one gluten free, since you are still nursing, YOU must be gluten free too!

Oh, and I totally want to encourage the extended breastfeeding. We're still going strong at nearly 32 months.

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The others gave you great advice... unlike the health care practitioners you've met with. Sheesh! I'll juist add a few things:

Celiacs are often lactose intolerant because of the damage to their gut. If anything, I would further cut dairy from your little guy's diet. As the others said, we're not cows and technically we don't need it. Coconut milks and yogurts are a good alternative, and you can always add vegan protein powders (to baking or drinks) if you feel he needs more protein. Hard, aged cheeses usually have no lactose and are genergally fine for most lactose intolerant people.

Vitamin D (and B12) can be taken sublingually (under tongue) or in drops for better absorption. If you find he needs those, I would recommend trying sublingual tablets.

He's lucky he has you. You've obviously done your research so you aren't led down an unhealthy path. Cheers to you Mom. :)

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Thank you all so much for the info, comments, and commiseration! Greatly appreciated here.

I got a printout of the test results today (from our PCP--she had received a fax last week and passed it on since I haven't been able to reach the PA). Here are a some more accurate numbers (vs. what I posted above, which I had received over the phone)...still waiting on a few more:

Ferritin: 11.3 (range 20-60 ng/mL)

Iron Binding Capacity: 402 (range 261-462 mcg/dL)

Iron & Saturation: 6 (range 20-55%)

Iron, total serum: 23 (range 50-120 mcg/dL)

Vitamin D: said this was low, but not deficient yet

RBC: 5.02 (range 3.80-5.4)

Hemoglobin: 12.8 (range 9.5-14)

Hematocrit: 38.3 (range 30-41)

MCH: 25.4 (range 27-31)

MCHC: 33.4 (range 32-36)

RDW: 15.6 (range 11.5-15)

Lymphocytes: 55.5 (range 21-49)

% Eosinophils: 12.1 (range 1-10%)

Eosinophils ABS: 1.21 (range 0-0.7)

Endomysial ABS, S (IgA): negative

IgA TTG Index Value: 2.3

IgA TTG Antibody: negative

I have not gone over these results with the PA yet, so I am mostly clueless to their meaning (other than that his iron is clearly low). Edit: added the Vitamin D and EMA results.

Edited by wembles

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There are a few abnormal numbers in there; high results aren't always better in blood work. For example, RDW has to do with the size consistancy on the red blood cells; his RDW is a bit high which can indicate (hemolytic) anemia or low levels of B12 or folate (which also causes anemia). Lymphocytes and eosinophils are also high; this can indicate an infection or inflammation from an autoimmune disorder.

Lab Tests Online has a great web site that explains what many of the tests mean. You might want to check them out so you go in to your appointment armed with questions and information.

http://labtestsonline.org/understanding/

His IgA TTG doesn't really give a reference range (as far as I can understand); I would ask them if there is more info on that because there is a big difference between having a 0 value and a 19.8 if the reference range is 1-20 on the test. Both are considered negative but one is borderline positive... I made up those values just as an example.

Good luck with the PA! :)

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We have our follow-up appointment with the PA next week. I have spoken with her since our last appointment, and she actually said we shouldn't rule celiac out yet, so I am more comfortable sticking with her. I also learned that the GI that she would refer to if needed is one of the best celiac specialists in our state, so I am glad for that!

We have been had my son on iron supplementation (for his iron deficiency), and she also put him on a multivitamin with vitamin D, since that was also low. We did go a different route with the iron (Floravital instead of Ferr-in-sol), and he seems to be tolerating that well.

I am adding a picture (which I also e-mailed to the PA today) of a rash/eczema flare-up that has been around the past 2 weeks on my son. He has had this intermittently in the past, but this the worst I've seen it (and it is spreading up his back). I know DH is rare in children (especially young children), but I thought I'd post it here and then see what the PA has to say next week.

Thanks!

IMGP5744

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Thought I would update where we are with my son. We had his follow-up vist with the PA this past week. He has been on the iron supplement for 8 weeks now (we switched from the Floravital to Natural Factors Chewable tablets cheaper and easier to bring with us if we aren't home). He has since had 2 recurrences of the rash pictured above, including a flare now that the PA was able to see. She suggested it might be a dairy allergy and said we could try switching to soy products if we wanted (I don't at this time...I'm not comfortable with large amounts of soy, especially in children). He does not drink (cow's) milk, but does eat yogurt and cheese. 

 

The suggestions at the end of the visit were to continue the iron supplement for 3 more months, consider adding zinc (she said the rash could also be a zinc deficiency?), and not to worry. She also said we really probably didn't need to return again, but could if we wanted to check the iron levels at the end of 2-3 months. I asked again why he would not be growing/why the vitamin deficiencies when he is not a picky eater, eats plenty of food for a toddler (including meat, which she had suggested could be why he was iron deficient since kids often don't like to eat meat...my son actually loves it and will eat entire chicken enchiladas, salmon filets, half an adult size burger, entire black bean burger, etc.). She said he may just be a small kid, but that we could check his stool for fat malabsorption if I would like. I am supposed to send in a sample sometime next week.

 

Since she is so unconcerned, I am honestly starting to feel a bit like a paranoid mama. To top it off, I also saw a GI doctor this past month (my symptoms: constipation since childhood, constant dull stomach ache...not painful, but achy if that makes sense, canker sores, white spots on my teeth and weak enamel, insomnia, tendonitis of the wrist, dizziness upon standing, pain under right ribcage that comes and goes, but takes my breath away when it comes--from my mom's experience, I am guessing it is gall bladder pain). Anyway, I was given a dx of IBS. The only symptoms that the GI was concerned with were the constipation and stomach ache. She did run a ttg IGA and serum IGA test (ttg IGA was negative, not deficient in IGA). After those tests were returned, I asked for the deamidated gliadin to be run, but she had never heard of it. She said she would look it up, but only ended up calling Labcorp for the code, which ended up being the code for the old gliadin test. I found the code myself on the Labcorp website, called it in to the GI, and she was kind enough to indulge me by resubmitting the lab order. All that, and they were negative (had both IGG and IGA done). Hence, my paranoia :)

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The lab tests you had done are just for celiac disease, they won't show non-celiac gluten intolerance (NCGI) which is 8-30 times more common and every bit as nasty. Also remember there is a false negative test rate of about 25% and you could fall into that category. I mention this because your symptoms match mine almost exactly (minus the teeth problems, substitute upper body joint pain for tendonitis, and add migraines).  I was told, a few times over the years starting from childhood, that these were just normal symptoms... I think what the doctors actually meant was, " I don't know what is wrong and I can't figure it out at the moment so rather than trying to figure it out, or ask for help, I'll tell you that it's normal for you (or imply it's all in your head)."  ... I bet that sounds familiar.  LOL Turns out I had celiac and Hashi's causing those symptoms, which are pretty simple to treat.

 

I think you should strongly consider going gluten free for a good half a year and then re-assess whether it has helped at that point. If this is from a gluten sensitivity, you've been dealing with it for years and consequently it could take a long time to resolve.

 

As for your little guy, it appears that she is not ruling out celiac but she's not planning any more testing at this time? Is she willing to diagnose him as gluten intolerant if he had a positive reaction to the gluten-free diet?  Perhaps check with her if she would give him a diagnosis of gluten intolerance if he went gluten-free with you for a for months and you kept careful records of how his symptoms changed (if they improve of course).

 

I'm sure you know that low iron is a symptom of celiac disease too, just like slow growth. They could also check his growth hormones and even do a bone scan.  I think a diet change would be the simplest and least invasive way to try and help him at first. if they aren't testing him anymore, try the diet.

 

Best wishes.

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