Need Advice Or Help! Could My Baby Have Celiac Disease?

[Guest tduffy]

Hello,

I am hoping that someone help me to determine if my little guy, Aidan, (11 months old) has Celiac Disease. We are going to see a pediatric gaestroentologist tomorrow afternoon, but right now I am dying to know if this is what has been beating my little guy down for the last month. He's had diarreah for about a month (on and off for a very long time) but severe diarreah for the past couple of weeks. He has also been vomitting and our doctor has determined that it is not a stomach bug. He is losing weight (a pound in the last 13 days)

He is eating, but everything is just coming out. He was doing fine as far as his disposition and then the last week or so he's been really pale, drawn face, sunken eyes with dark circles and sleeping A LOT. We've had him at the doctor a lot because I know something is just not right. He's had really bad gas (smells terrible like sulfur) and his diarreah smells so horrible. He also has bad breath and has started vomitting since Saturday. Otherwise, no fever, nobody else is sick- he just can't keep food in. Also, he has had a very bad diaper rash for quite some time now that regardless of how quickly he is changed we can't keep it clear. They determined that he had what looked like a yeast infection and treated it as such, but it just keeps coming back. I am so unbelieveably on top of his diapers and this is something that is new. So anyway, they did some tests on Tuesday (took a stool sample) which they lost at the lab unfortunately and so tomorrow we were referred to a specialist. I found out from my mother in law that my husband's sister and four of his cousins have been diagnosed with Celiac. I have never heard of it before a few days ago and then suddenly I am thinking that all the symptoms sound like my little guy. I am so worried as it sounds quite serious and not something to take lightly. Do you have any advice, suggestions, or anything? I had done research on Tuesday after we spent the afternoon at the hospital myself and decided to eliminate gluten and see if things got better and so for the last two days he hasn't had anything with gluten and I am already noticing a bit of an improvement. What should I expect tomorrow? Could this be Celiac? Anything you all have to share would be much appreciated. Sorry so long.

Concerned Mommy in Florida!

Thanks!

[Guest tduffy]

Hello,

I am hoping that someone help me to determine if my little guy, Aidan, (11 months old) has Celiac Disease. We are going to see a pediatric gaestroentologist tomorrow afternoon, but right now I am dying to know if this is what has been beating my little guy down for the last month. He's had diarreah for about a month (on and off for a very long time) but severe diarreah for the past couple of weeks. He has also been vomitting and our doctor has determined that it is not a stomach bug. He is losing weight (a pound in the last 13 days)

He is eating, but everything is just coming out. He was doing fine as far as his disposition and then the last week or so he's been really pale, drawn face, sunken eyes with dark circles and sleeping A LOT. We've had him at the doctor a lot because I know something is just not right. He's had really bad gas (smells terrible like sulfur) and his diarreah smells so horrible. He also has bad breath and has started vomitting since Saturday. Otherwise, no fever, nobody else is sick- he just can't keep food in. Also, he has had a very bad diaper rash for quite some time now that regardless of how quickly he is changed we can't keep it clear. They determined that he had what looked like a yeast infection and treated it as such, but it just keeps coming back. I am so unbelieveably on top of his diapers and this is something that is new. So anyway, they did some tests on Tuesday (took a stool sample) which they lost at the lab unfortunately and so tomorrow we were referred to a specialist. I found out from my mother in law that my husband's sister and four of his cousins have been diagnosed with Celiac. I have never heard of it before a few days ago and then suddenly I am thinking that all the symptoms sound like my little guy. I am so worried as it sounds quite serious and not something to take lightly. Do you have any advice, suggestions, or anything? I had done research on Tuesday after we spent the afternoon at the hospital myself and decided to eliminate gluten and see if things got better and so for the last two days he hasn't had anything with gluten and I am already noticing a bit of an improvement. What should I expect tomorrow? Could this be Celiac? Anything you all have to share would be much appreciated. Sorry so long.

Concerned Mommy in Florida!

Thanks!

Sorry, Thank you for having me here on the board. My name is Trisha and I am new to this website. It is so informative! Thanks again and sorry for the double post. I didn't realize that I had posted this message moments earlier.

Trish

[CarlaB]

With his symptoms and family history, it's quite possible. It is serious. However, there are thousands of us that live with this every day and have a full, happy life! So, although you need to take it seriously, if treated with a gluten-free diet, it's not life-threatening and it's a dietary cure. So, take a deep breath, get a good night's sleep, and be glad you are finding out what your son's health problems are! It will be fine.

A couple days won't make a difference, but the tests need to be done before he's gluten-free. If he's off gluten for the testing, it will not be accurate. That is why you also will want to get the biopsy scheduled ASAP if the doc plans on doing one. You don't want your son to have more damage and discomfort waiting for testing. Many people choose to let the blood test and dietary response be the proof for diagnosis. That will be up to you and you will be able to talk to the doctor tomorrow. It will be fine. I know you're worried. I was more upset about my daughter being diagnosed than I was about myself.

[Fiddle-Faddle]

The best we could say at this point (we're not doctors and we don't have a heck of a lot of information here) is that it's certainly possible!

Is Aidan eating a lot of gluten-containing foods right now? Pasta, breads, crackers, cereals, chicken nuggets (well, he's a little young for chicken nuggets, but you never know), goldfish crackers, graham crackers, that sort of thing? What is AIdan eating and drinking? Did this all start when you weaned him off breastmilk or started him on cow's milk? If so, it could be a problem with casein (the protein in cow's milk). Did you start a lot of new foods either at the same time or in quick succession? If so, it's hard to pinpoint, and you would probably have to eliminate everything and go back to whatever he was eating before the diarrhea started, and add things back in one at a time to see how he reacts.

As you might see from what a lot of people here have been through, there are good doctors who listen, and horrible doctors who blow off concerned moms and who think that diarrhea in kids is just one of those things." (It's not, so if you feel like your doctor is dismissing you, find another one!)

Whatever the outcome, yuou'll find an enormous amount of inform ation and support here. Welcome aboard, and let us know how the appointment goes! The good news is, the celiac diet (after the first two weeks of total shock) is very easy to manage, especially if you come here a lot.

Keep us posted!

[Guest tduffy]

Yes, he has been eating all of the above ( or below I guess) Well not chicken nuggets, but lots of pasta, breads, cereal, oatmeal, crackers, nilla wafers, etc. I just stopped nursing about a month ago (yes, it was around the time that the diarreah started to appear too??!?) and he has not really been able to tolerate whole milk, so my doctor suggested we try soy milk, which he has done very well with. She said it would be very unlikely that he is lactose intolerant. Yes, I do feel like they are not taking this concern seriously. We had a nightmare of a weekend last weekend and this week has been terrible too. We took a stool sample in on Tuesday and spent the day at the hospital due to Aidan's condition and then they lost the specimine before they could perform the tests. So instead of starting over from scratch with my doctor, he suggested seeing this specialist. They did not want to address my concern about Celiac and now more than ever with my husband's family history I am thinking that this is what it is. Tomorrow afternoon feels like a lifetime away. Thank you for your quick responses. It is wonderful to know you all are here. I will keep you posted.

Thanks again!

Trisha

[lovegrov]

It certainly sounds like it's possible but everything I've ever read says celiac testing at his age simply isn't accurate. It could come back negative even if that's his problem. Do some research and ask questions.

richard

[AndreaB]

Just a caution. Soy can cause the same problems with the intestines as gluten. I'll dig up the article I posted in the Other food intolerances section if you would like, or you can skim through topic headings, either way.

[CantEvenEatRice]

Definitely sounds like it could be Celiac. It may be difficult to get an official diagnosis at such a young age. My son (19 months) just tested positive through Enterolab, but his bloodwork was negative (well they lost most of his sample, so only part of the tests were done--I feel for you about your son's stool being lost--so frustrating!). I would run the blood tests, but then definitely try to diet even if the blood tests are negative. They will probably suggest a biopsy, but that is so invasive and often not always reliable as well. The diet is the best diagnosis in my opinion. Best of luck!

[TCA]

My son was very similar. After testing him for everything under the sun, 2 negative endoscipies and inconclusive blood work we did a diet trial and the results were amazing. I"m not telling you to not go through the tests, just remember that the tests are often wrong on kids under 5. I regret that it took me over 2 years to find that out. Whatever the results of the test, take him off gluten and see if he improves. That's the real test. My son doesn't have an official diagnosis, but only because his GI knows I will keep him on the diet. He sees no reason to label him with a disease that he doesn't have a definitive test for since it will make it hard for him to get insurance and things of the like as he grows. I agree. He is thriving on the diet and that is all that counts!

Hope he feels better soon!

[GFBetsy]

Testing does tend to be less reliable on children, though I understand that there is a new test coming out (created by iNOVA) that is supposed to be sensitive enough to pick it up in children. (Don't think the major labs have picked it up yet, though it's through the FDA.) My daughter's bloodwork came back "equivocal", but I was pretty sure that she was really positive. (Her twin sister was eating the exact same things, and having none of the GI symptoms.) I removed gluten from her diet, and 2 days later her diarhea was gone. And she was smiling . So we keep with it. I figure that when she is 12 or so, if she really wants to do a glukten challenge, that will be up to her, but in the meantime (she's not quite 2 now) keeping her gluten free is my responsibility - because that's the best way I know of to keep her healthy.

Good luck at the doctor's. Insist on having the bloodwork done, and go from there. Just know that negative bloodwork is not an assurance that he DOESN'T have celiac. Best Wishes!

[Fiddle-Faddle]

The 20-month-old son of a friend of mine had a lot of problems with diarrhea, tummy cramping, and poor weight gain. Sounded like celiac to me--but things got much better when they took him off soy milk (he also had gotten breastmilk before starting on soy).

You may be lucky and find an intelligent, well-informed, sensible doctor--and I certainly hope you are lucky! But if you are not lucky, you might consider finding the source of the problem yourself via diet (keep VERY detailed records of everything he eats, every poop, every cranky episode, etc.).

[Guest tduffy]

WOW!!! You are all amazing. Thank you for the support and responses. We saw the GI specialist this afternoon and he ordered about six different tests. They first want to rule out all parasites, which will be done through stool tests. He also had blood drawn today and they are testing for several things, including celiac and also signs of cystic fybrosis (??? not sure where that came from and I am absolutely positive that there is no way he could possibly have it, but I guess they have to rule everything out before proceeding) So he told me to start him back on the gluten until we get through this process. I am nervous that I pulled gluten from his diet this past Wednesday and he had the blood drawn today, so I hope that the results aren't skewed as some have suggested. The doctor told me it is fine, but we'll see. He said that if it comes back positive they would do a biopsy, which I agree sounds very invasive and scary. I don't really feel comfortable going that route and would like to try the diet approach. He seems to be doing so much better since coming off the gluten (he's not great, but still an improvement from where we were) so I really hate that I have to bring it back. I guess until we know for sure it's necessary. I am also supposed to keep a food journal for the next three days and fax that it after the weekend, so we will start that tomorrow. Other than that, I don't know much else yet until these results start coming back. He had diarreah this morning (oozing from his diaper and in his jammies- poor little noodle was such a mess!) and has pooped seven times today (very lose this morning and then a bit firmer, but still not great) He was in bed again tonight by 6:45, but they took a good amount of blood and it was quite an eventful day for him so I am sure that is why. I will keep you all posted next week when I hear something. If these results come back negative, I will definitely be sticking with the diet for a while. It can't hurt to remove gluten and if it does help that really is all that matters. I just want him to feel better and get back to the healthy, happy, thriving boy that I know! I hate this! Thanks for listening and responding. I will keep you all posted and you are all in my thoughts.

Take care, Trish

[Fiddle-Faddle]

Sorry to be quick--I'm too tired to write anything long and decent. But it just occurs to me that, if blood was already drawn, why on God's green earth does he want your child back on gluten? If going off gluten fixes the problem, then there is no need for a scary, invasive procedure, is there? Especially if there is STILL a chance of a false negative (like, if they biopsy a spot that has not damage)! If he has a total turnaround after two weeks of going off gluten, then there is your answer. And please forgive me for being alarmist, but knocking out a child IS risky. Every year, we read about another child who dies during a routine dental procedure, or a routine ear tube procedure. I would save something like an endoscopy for a very last resort AFTER exhausting all non-invasive possiblities first.

Again, I'm sorry if this seems brusque.

[AndreaB]

Thanks for the update Trish.

I will wait for his test results.

[Guest tduffy]

I appreciate the honesty and I was feeling the same way about putting him back on glutten. I questioned it too and he gave me some good reasons, but I have really been going light this weekend. I am not giving him bagels or anything. By next week, once that bloodwork comes back then I will take him back off the gluten. And also, just to let you all know, the diarreah is back. So regardless of what the tests say, I feel very strongly in my heart that it has something to do with the glutten. Positive results or not, it just doesn't seem to agree with him. I would be curious to read about the soy allergy, however. He doesn't seem to tolerate dairy, so that is why we put him on soy. Is it possible that he could have an intollerance to both?

I am very apprehensive about a biopsy (which he did say would be the next step if the results are positive)

My husband and I both feel he is just too small for such an invasive procedure. He's been through an awful lot this last month and I am not sure that putting him through a biopsy is really necessary. Is it just to see the inside of the tummy to determine how much damage has been done? If so, what difference would it make? They can't do anything to repair it, correct? Isn't it something that occurs over time once he is glutten-free?

I am saying no to the biopsy and standing firm. He's just too little. Hopefully we will have some results tomorrow. I will post and let you all know when I do. I am praying that it's not celiac, but it is good to know that if it does come down to that there are so many others out there that are willing to lend support!

Thank you all for your responses, we really appreciate it.

Trisha

[Guest nini]

my opinion (and I'm just a mom with Celiac and have a daughter with Celiac) is that the biopsy is completely unnecessary and invasive and too risky. I did not have a biopsy and my daughter did not have a biopsy. My blood tests were positive but my daughters were not, how do we know she has it to? Positive dietary response. Which you've already indicated your son had just in a few days on the diet. My daughter was like your son, horrible diarrhea, diaper rashes that were just miserable, losing weight, vomiting etc... her ped. agreed with me that positive dietary response was enough to determine that she is at the very least gluten intolerant, and the proof is in the fact that she is now a very healthy 6 year old after being gluten-free for 3 years now. My Dr. told me that the biopsy was redundant when my blood test was positive, so if the blood tests on your son come back positive, it's an absolute that he has it, if the blood tests are negative, doesn't mean a thing, they just aren't accurate enough. Not just in children but adults too. If you want to try Enterolab, a lot of people have gotten clearer answers from them, and yes some people do test negative with Enterolab, but their high rate of positive dx, is because the vast majority of patients who pursue a dx through Enterolab already have a very strong reason to suspect that gluten is the problem.

Also, it doesn't really matter if it is classified as celiac or gluten intolerance, they are just parts of the same animal so to speak. Now, IF he did not get any better on the gluten-free diet, then of course you would want to pursue other testing, but going gluten-free would not affect tests looking for anything other than celiac or gluten intolerance.

At my daughter's most recent well check up, her Dr. was amazed at how healthy she is, she said she very rarely see's children this age, THIS healthy... now either she's not a very good pediatrician or there is a lot more info out there as in dietary intolerances, that the traditional medical community isn't willing to accept yet.

bottom line, it's up to you, don't let the Dr. bully you into a biopsy if you feel it is not what you want to do. If he responds well to the diet then you have your answer. As far as lactose intolerance goes, he may outgrow that if it is a problem now, often lactose intolerance goes hand in hand with gluten intolerance, especially if the villi are damaged, because the tips of the villi is where lactase is digested, and if those are damaged then you can't digest lactase, but once the villi heal, most can tolerate dairy again. For some it's a lifetime thing though so you'll have to be the judge of that.

A detailed food journal can prove very helpful in this case... keep track of everything your son eats and comes in contact with and any symptoms or lack of symptoms that happen...

also keep in mind that certain craft supplies like playdough and some pastes and finger paints contain gluten.

[Fiddle-Faddle]

If the blood has already been drawn, then there is no need for him to be eating gluten now, is there? I've read over and over on this board some very good advice:YOU DO NOT NEED A DOCTOR'S PERMISSION TO REMOVE GLUTEN FROM YOUR CHILD'S DIET. GLUTEN IS NOT SOMETHING ANYBODY NEEDS IN THEIR DIET.

It's like nuts: they are very tasty AND nutritious, and could be a great part of a healthy diet--but if they cause problems for a child, you keep them out of his diet, right? Same goes for gluten.

[AndreaB]

I wanted to pipe up about enterolab. I had my family tested through them. We did the gluten panel which included dairy, soy, egg and yeast. That's all they offered in May. They are working on getting testing up for more intolerances.

Soy can cause the same damage in people as gluten. My husband and I are intolerant through enterolab, my children were just one number below. We just had IgG tests done for them and my husband. I expect they will come back at least low intolerant to soy based on the enterolab numbers.

I feel enterolab is worth the expense and if it helps to have something in writing and to know if there has been an autoimmune response (ttg level) or malabsorption was nice for me. There website is Open Original Shared Link.

I posted an article or two on soy in the other intolerances category. I'll go search that out for you and link it here. Be back.

Ok I found it. I had posted that I was allergic and intolerant to soy. I just learned that IgG levels are actually intolerances. I am not allergic to it.

Open Original Shared Link

[concerned-mom061]

Hello. I have a 13 month old who did exactly the same thing. For months she had constant runny stools, vomiting, dehydration, a rash that still hasn't went away, and weight loss. She lost 4 pounds in a matter of 2 months. It all started at 8 months old when we started trying baby foods on her. Her pediatrician was positive she had celiac. I will say that you do need to take this serious, and don't let the dr.'s just blow you off, but let me caution you about being too persistent. I'm not trying to scare you by any means, but there have already been 2 moms, one being myself, that knew something was wrong w/our babies and wanted something done about it, and we both were accused of causing the problems. Just make sure you start documenting everything. Write down what he eats, and then record his stools and urine output. Also, make sure you have other people that can tell the doctors what he's doing with the runny stools and vomiting. Please don't let this make you think that you shouldn't pursue this illness, for if he's this sick now, letting it go will only make it worse. I just don't want to see anyone else go through what I did for 30 long, lonely days. I hope all goes well, and that he gets better soon.

[loraleena]

It could be celiac, but it could also be parasites. My son at 15 months started vomiting and having diareahha for 2 months. They did the normal par. tests, but all were neg. The docs told me they are only accurate about 45% of the time!! After 2 months, I demanded treatment for a parasite. The docs agreed and he stopped vomiting after the first dose. It took 3 rounds, but he finally got over it. I would recommend a stool test from Great Smokies labs if the typical ones are normal.

[Mamato2boys]

Just a caution. Soy can cause the same problems with the intestines as gluten. I'll dig up the article I posted in the Other food intolerances section if you would like, or you can skim through topic headings, either way.

Yup, I was going to say the same thing. There's about a 30% cross-reaction between soy milk and cow's milk, too. Soy milk is very well known for causing diarrhea (it caused HORRIBLE diarrhea with my first son). I would try switching him to gluten-free rice milk ASAP and see if that helps.

[jennc in ri]

WOW!!! You are all amazing. Thank you for the support and responses. We saw the GI specialist this afternoon and he ordered about six different tests. They first want to rule out all parasites, which will be done through stool tests. He also had blood drawn today and they are testing for several things, including celiac and also signs of cystic fybrosis (??? not sure where that came from and I am absolutely positive that there is no way he could possibly have it, but I guess they have to rule everything out before proceeding) So he told me to start him back on the gluten until we get through this process. I am nervous that I pulled gluten from his diet this past Wednesday and he had the blood drawn today, so I hope that the results aren't skewed as some have suggested. The doctor told me it is fine, but we'll see. He said that if it comes back positive they would do a biopsy, which I agree sounds very invasive and scary. I don't really feel comfortable going that route and would like to try the diet approach. He seems to be doing so much better since coming off the gluten (he's not great, but still an improvement from where we were) so I really hate that I have to bring it back. I guess until we know for sure it's necessary. I am also supposed to keep a food journal for the next three days and fax that it after the weekend, so we will start that tomorrow. Other than that, I don't know much else yet until these results start coming back. He had diarreah this morning (oozing from his diaper and in his jammies- poor little noodle was such a mess!) and has pooped seven times today (very lose this morning and then a bit firmer, but still not great) He was in bed again tonight by 6:45, but they took a good amount of blood and it was quite an eventful day for him so I am sure that is why. I will keep you all posted next week when I hear something. If these results come back negative, I will definitely be sticking with the diet for a while. It can't hurt to remove gluten and if it does help that really is all that matters. I just want him to feel better and get back to the healthy, happy, thriving boy that I know! I hate this! Thanks for listening and responding. I will keep you all posted and you are all in my thoughts.

Take care, Trish

[eKatherine]

It could be celiac, but it could also be parasites. My son at 15 months started vomiting and having diareahha for 2 months. They did the normal par. tests, but all were neg. The docs told me they are only accurate about 45% of the time!! After 2 months, I demanded treatment for a parasite. The docs agreed and he stopped vomiting after the first dose. It took 3 rounds, but he finally got over it. I would recommend a stool test from Great Smokies labs if the typical ones are normal.

Which parasite did you decide to have your child treated for? The treatments are different for each.

[Guest tduffy]

Just wanted to give you all an updated. It's been a rough week. Aidan is not improving. The blood work came back on Tuesday and looked normal with the exception of the hemo levels, which were a little low, but not alarmingly low. He said that normal range is 11.4- 14.1 and Aidan was at 11.0. He wanted to wait to see what happened with the stool samples, which two results came in today and were negative (Giardia and blood cult.)

He also said that he tested negative for the initial round of celiac tests, but that doesn't mean that he doesn't have it and the only want to know for sure is with a biopsy, which I refused. Aidan has had bad diarreah the last few days and is back to looking pale and his eyes look awful again. Otherwise, he is acting fine- eating, drinking, playful, etc. He slept 13 hours last night (down at 7 and up this morning at 8:00 am) and took a really long nap today again which is not typical for him. So we have an appointment again tomorrow at 12:15 with the specialist. He is going to weigh him and if he has lost more weight they want to admit him and start running more tests???? We just don't know what to do and I am starting to feel panicky. What is going on inside that little belly of his that is causing this to happen? I have him off the gluten now (effective Tuesday evening, once we started receiving the tests back) and there hasn't been much of an improvement. I will keep you all posted tomorrow. I just don't know what else to do and feel so bad for all he is going through. It's awful!

Thanks again everyone. I will keep you posted.

Trisha

[Guest tduffy]

Hello. I have a 13 month old who did exactly the same thing. For months she had constant runny stools, vomiting, dehydration, a rash that still hasn't went away, and weight loss. She lost 4 pounds in a matter of 2 months. It all started at 8 months old when we started trying baby foods on her. Her pediatrician was positive she had celiac. I will say that you do need to take this serious, and don't let the dr.'s just blow you off, but let me caution you about being too persistent. I'm not trying to scare you by any means, but there have already been 2 moms, one being myself, that knew something was wrong w/our babies and wanted something done about it, and we both were accused of causing the problems. Just make sure you start documenting everything. Write down what he eats, and then record his stools and urine output. Also, make sure you have other people that can tell the doctors what he's doing with the runny stools and vomiting. Please don't let this make you think that you shouldn't pursue this illness, for if he's this sick now, letting it go will only make it worse. I just don't want to see anyone else go through what I did for 30 long, lonely days. I hope all goes well, and that he gets better soon.

Dear concerned_mom061,

I am SHOCKED after reading your post and feel my heart aching for you. Why on earth would you be accused of causing the problem? Because of something you were feeding him? I have been following instructions given to me by the doctor and have always cooked fresh food for him, nursed him, and followed everything by the book as best I can. I only put him back on the gluten because they said they needed him back on it until the tests were done and also took him off as soon as I knew the testing was over. To be honest , I have been trying my best to not to really freak out at this point. I am very worried about him and just want answers from someone who can figure out what is going on with Aidan. What do you mean by thirty long lonely days? I am so sorry for you and I am just confused and upset after reading your email. My huband and I adore our little guy and are worried sick for him. He has never been ill before and we are just really worried. How could I not take this seriously and want to do everything in my power to help him when I see these changes in my son???!?!?! I don't understand what this world is coming to when you can't even have your child examined without someone questioning you!!??!?!?! I am so sorry for your experience and hope that everything has gotten better for you and your family. Take care and thank you.

Trisha