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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 FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) 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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

7yr Old Fft And Constipated
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Hi- I am new to this board and need some advice and thought that this would be a great place to start. Here's some quick history. He was born at almost 9lbs. At almost 3 months he was labelled failure to thrive as he wait went back to just below his birth weight. With numerous extra feedings both breast and formula we were able to get his weight back up. Things were pretty good until age 2 or 3 (eating solids of course), when he became so constipated that he was having leakage around the bowel. The hospital gave him and enema and then we were told to increase his liquids and fiber. We did that, and things once again seemed to go along fine. We started to notice that Cooper tended to be one of the smaller kids in his class, each year getting smaller.

At his 7yr physical this year, he actually went below the 3% percentile in height and weight (one is off the charts - although forgive me right now as I am so emotional about all of this I don't recall which). We also had a bone age scan done - he is 7yr one month and his bones are 5 yrs 9 months. He has once again been labelled failure to thrive.

Each time that I would bring this up our Ped's (I really liked her) would say - well it could be constitutional growth, and "the apple doesn't fall far from the tree". I am 4'11" and dad is 5'11". I would kind of go with it, but always have had this nagging feeling that we were missing something.

Some of the other issues that we have had with him is this chronic constipation and gas. He is on fiber 2x per day.

This year at his physical she agreed that b/c he is in the 3% we need to take a look and and did a bunch of blood work including a celiacs blood test, a cycstic fybrosis test and finally a referral to a pediatric GI. The celiacs came back negative.

Once we were at the Ped GI - I pushed and he agreed to do a stomach xray and a stool sample (difficult since he is constipated - duh!) but thought that we could treatment the symptoms of gas and constipation with laxative and probiotics.

The results came back and his Ped GI thought that the stomach xray contained a normal amount of stool - his ped however, thought that it was too much and started us on this huge routine of adding mineral oil and doing an enema to help get him cleaned out, and then she wants to do another stomach xray in one month. He has now had the following on a daily basis... fiber 2x, mineral 1x, probiotic 1x, laxative 3 times a week and 3 enemas - this has been all since October 2nd.

Here's my question to this wonderful group - do we follow through with this in hopes that the 2 doctors will finally agreed that he needs to be scoped for CELIACS - which I am pretty certain that he has per the symptoms list. Or should we just go gluten free and say to heck with all the testing and the FIBER, LAXATIVE,ENEMA routine?

My husband and I haven't been tested but have a lot of the symptoms, I have IBS, multiple miscarriages, migraines, just to name a few. He has diverticulitis.

It is killing me b/c I truly believe that if he was off gluten we could give him a good chance to have "catch-up growth" before its too late, both emotionally (kids can be so cruel) and physically.

Oh, one thing that I forgot to mention - if he eats a pasta dinner and bread - he has absolutely the worst gas EVER!! And then has tummy bloating.

The Kids Folks

I t

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You do not need a doctor's permission (nor our approval) to put him on a gluten-free diet. You have motherly instinct. It is rarely wrong. Do what you feel is best for your son. The diet is healthy and if he responds well to it, then you have your answer and he gets WELL. This is the goal. :)

If after you give it a good go for 3-6 months there is absolutely no difference, then you can keep looking in all of the other areas.

It cannot hurt.

And since you say you and your husband both have symptoms, the best thing is for ALL of you to go gluten-free and have a 100% gluten-free household. That is what I did. I am the only one Gluten Intolerant. But it was soooo much less stressful for us all to eat gluten-free. No worries then of CC.

Wishing you all well!

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Your son sounds just like mine! He was born large and slowly slipped off the growth charts. When he was tested for Celiac in March he had just turned 8 and weighed 41 pounds. He was always constipated. He would have a BM once a week. His pedi put him on some powdered stuff that never worked. She also said he would just be small since my husband and I are both small. I insisited on further testing at his yearly checkup in March and he was positive for Celiac. The gluten free diet is the best thing that has happend to our family. My son has gained over 10 pounds and now has BM's once a day. In my opinion, try the gluten free diet and see how your son reacts. But, if you want to get an endoscopy he has to stay on gluten for the test to be accurate.

I also have (had) IBS and I went gluten free. I feel 100% better so it's a win-win for the entire family! It's overwhelming at first, trying to learn what is okay and what isn't, but you will get the hang of it and it will become second nature.

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Well, like the others said you don't need anyone's permission to the diet. I would push as hard as I could for testing though. It seems crazy to me that dr's could just treat the symptoms w/o even trying to figure out what is wrong. It is not normal to be constipated. One should not have to take fiber everyday. Follow your instinct.

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While my log-in name is new, I am actually an old-timer! I simply can't log in under my previous name . . . despite numerous tries - just wanted to let you know I'm not new and "butting in".

With regard to the bone growth, my son was diagnosed with a bone growth delay of 3 years, 5 months when he was in the 5th grade (he's 26 now). I asked the endocrinologist we saw exactly what that meant - I am 6'1" and he was by far the smallest child in his grade.

His answer was that he had "short stature syndrome" . . . then he said, "Delayed growth. He's a a late bloomer. It means that he is going to be one of those kids that goes away to college, comes back and everyone says 'WHO IS THAT??' " My son's response? "Fat lot of good that does me NOW. And how would you like to be the smallest kid in your class and show up with HER as your mom?" I started laughing and said, "I must be a monstrosity." Brandon said, "No, but YOU'RE really tall. I'M not."

The endocrinologist said that we could try testosterone shots to induce growing (he was not lacking in growth hormone), and because Brandon had migraines, they wreaked havoc with them - it was awful. The shots were short-lived.

Today, he is a very healthy 6'1 (his father is 5'9"). He just woke up from a nap on the couch and about the delayed bone growth issue said, "Don't do anything . . . "

With regard to the constipation, is it that he has stools that are always too firm / hard, or is that the stool is of "normal" consistency and he has difficulty HAVING a bowel movement? The reason I ask is that, when I was practicing as a PT, I treated a large pediatric population. What I found in 99.2% of patients referred starting at age 8 months and on (I did a chart review study to verify my statistics), was that they had some type of sacroiliac dysfunction - namely with a sacral torsion - at a level that gave too much stress on the nerve root that innervates the external rectal sphincter. It was in constant spasm. These kids would continually try to find a "position" in which they could have a bowel movement. Toddlers would be trying to contort their bodies - and want to stay in diapers for that reason - so that they could find a position that would allow the sphincter to relax so that they could have a BM . . . without screaming in pain. A orthopediatric therapist - or even a women's health therapist - who does manual therapy may be able to help if that's the case. Also, an osteopathic doctor may be able to help as well.

If this is the case, feel free to email me and we can discuss it further, if you'd like.

Good luck with this. As a parent, I know how disconcerting it can be when your child is having health problems. The worry sometimes can be so awful . . .

Lynne

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Hi.

My daughter sounds a lot like your son. She's 10 now and was recently diagnosed with Celiac (me too.) At the beginning of the summer I, too, strongly suspected Celiac. I did some research and found Enterolab. Enterolab looks for the gluten intolerant antibodies in the digestive tract using stool testing (not blood). You order their kit online yourself and do the testing at home, then mail back the completed kit. The results are emailed to you a couple of weeks later. You don't need to involve a doctor. I liked that. So, we did the test and when the results came back positive I took them to the doctor and she ordered more tests. Then we were finally diagnosed.

I am also new to this forum, but I have noticed a lot of folks have tested with Enterolab. I think the kit was about $350 and included milk casein (milk protein) intolerance and genetic testing too. If you're having trouble convincing the doctor you need more testing, you may want to look them up and give it a try. I know the stool testing is not mainstream, but if the results are positive it's more evidence to support your suspicions. I just sent in the insurance receipt, so I'm sorry that I don't know yet if it's covered.

Or, like the others members mentioned, you can always try the gluten-free diet on your own. Starting the diet was life changing for us. Since all 5 of us are on it I had to pitch the pantry, fridge and freezer and start over. (My other two children tested as gluten intolerant). It's a commitment to just "try" it. But, it has been SO worth it for all of us! SO worth it. :)

Best of luck,

Sonya

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Hi - I just wanted to touch base with everyone and let you know how it is going here. First of all thanks for the support! We started our son on a gluten-free diet last Saturday. So we are almost at one week, we have seen improvements almost immediately. He is no longer on the numerous fibers and laxatives and has been able to BM everyday except one (oops - shouldn't have eaten those cheez-its!).

His mood is greatly improved - although we didn't realize how bad it was until he starting feeling better! He is also my snuggly kid once again - I asked why he had stopped hugging and snuggling and he said "mom, its cuz my body hurt all the time!". I so wanted to sit right down and cry, I can't believe that we missed all of this!

Anyway - again thanks for this group! We will be seeing our pediatrician end of this month beginning of next and boy of boy do I have the data for her! Been keeping track of everything!.

I do have a question - Did your kids who have gone gluten-free experience headaches? He had one yesterday and one again this morning, he does well as soon as he has some painreliever, but of course its some else to worry about. He is also more tired right now - could it be a growth thing???

The Kids Folks

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Most of us went through "de-tox" from gluten which can include fatigue, headaches, more BM's, etc. This is normal. It will pass. It took me 6 weeks for all that gunk to stop completely. So hang in there. PLUS even one dose of "cheeze-its" can cause damage. So it could be the results of that as well.

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Oh boy - things were going awesomely for both my son and myself. I decided what the heck I would do gluten-free with him. We have had an amazing two gluten-free weeks. His attitude is amazing, his sleep is restful, and his bathroom habits - let's just say that we are no longer on the numerous numerous fibers and laxative!! I have noticed for my self, my IBS has definite improvements, and my insomnia is no longer a daily issue! Woo Hoo!

So it was all great until today. We went to a brunch up at church. Being very careful we avoided all of the bread products, (french toast, muffins, rolls, etc) We loaded up on fruits and veggies, and then added sausage patties! Aaarghhhhh - the sausage must have had gluten as both of us are now feeling like crud today!

Well, kindof figure that this is a learning experience and a reminder for both of us that we need to ask the questions - (heck we even knew the cook on this one). And an even bigger reminder of why we are now gluten free!

I just want to say thanks to this wonderful support network. This group is the best!

The kids folks

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I do have a question - Did your kids who have gone gluten-free experience headaches? He had one yesterday and one again this morning, he does well as soon as he has some painreliever, but of course its some else to worry about. He is also more tired right now - could it be a growth thing???

I know this is a little late, but I wanted to chime in that it may not necessarily be a gluten issue with the headaches. My daughter and I were both doing the headache thing at the time you wrote that. I know mine was sinus issues even though I didn't have sinus drainage. I suspected my daughter's may have been the same. Lasted for about a week and went away. I assumed it was something environmental/seasonal/pollenish kinda thing. Not all symptoms lead back to gluten and for a while, it will be hard to tell which ones are and which ones aren't. (Not saying this was or wasn't.)

Also, great news with all the results you have seen!!! Bummer about the breakfast. Lots of sausage is OK so it may have been a cross contamination thing, too . . . Were they using the same griddle or spatula for sausage as they did the pancakes? Hard to tell at this point. Live and learn. We've all been there. Keep up the good work!

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Hooray!! We have now been gluten free at our house for our third week! So far my son's weight has remained the same - although I am starting to doubt the accuracy of our scale as he is starting to look like he is filling out. No longer are his little ribs sticking out! But the good news is he has gained 1 inch in height!! This is the kids who did not grow at all in the last year and now since going gluten free he has gained an inch in less than a month!

Could he actually grow that soon from going gluten free or is this a coincidence?

All I know, is my son and I have never felt better (I joined him going gluten free!) Now to convince my little GERD DD and my DH how much better we feel and they can too! :D

The Kids Folks

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