Need Advice About My Kids

[taterhart]

Hey guys! The short version of my story is this: My 3 oldest kids (7.5, 6 and 4) have all dealt with constipation for years. Each of them went through 2 month long bouts with diarrhea as toddlers, but since then it has been constipation. My 2 boys have both had trips to the hospital that turned out to be severe constipation. The answer given to me has always been laxatives. This last time, about 3 weeks ago, our pediatrician told me to give them all Miralax everyday FOREVER. I told her that now the baby is having issues with constipation, and it doesn't make sense to me to have 4 kids having bowel issues, and I want to get to the 'WHY' instead of just addressing the 'what'. She told me that most kids don't eat enough fruits and vegetables and/or drink enough water. If she had bothered to ask me about our habits she would know that my kids only drink water except having 1 cup of milk with supper, and that we eat more fruits and veggies than any other family I know personally. It just doesn't make sense to me.

At the suggestion of a few different people, I looked into gluten, and instantly felt like I had found something. Reading a couple of books, I especially recognized myself. My daughter and I both have autoimmune conditions, so there is that link there for her too.

However, so far I am the only one responding to going gluten free. It has been about 3 weeks for me, 2 weeks for the kids. I have a weird rash on my face that has cleared up. When I ate a piece of bread the rash came back, then cleared up again about 3 days later after no gluten. And I am having reactions to dairy now too. But the kids, so far I can't tell a difference. If gluten is behind their constipation issues, how long do you think it will be before I see a change?

I did the Miralax thing with all of them 2x a day for 5 days to do a clean out b/c my son was so impacted, but Husband and I both agreed that continuing to give it to them everyday for the rest of their lives is just not an option without knowing why.

I was never expecting to see gluten issues in myself; this was all to help my children. And I'm pretty sure that I'm reacting to something else too, maybe soy. Between having all this crazy up and down with myself, and not seeing any results in the kids, I'm feeling very confused, overwhelmed and disheartened.

Does any of this resonate with anyone else?

Should I just stop and find a doctor? Or do I stay the course and wait and see?

I feel like I'm on a freakin roller coaster.

[MaryJones2]

Welcome! I think you just described most people's experiences with doctors - even the adults

You should definitely find a good celiac (and food allergy) Doctor in your area. It certainly won't hurt to have them checked out and it is odd that your entire family seems to have similar digestive issues. The constipation could be caused by an intolerance to dairy - it tends to be a source of continued constipation in a lot of celiacs when they are first going gluten free. You might also try a diet that is free of all of the top 8 allergens for a week or two and see what happens.

Also, just a note - if you do decide to pursue the celiac option you need to understand that everyone needs to continue eating gluten until all the tests (endoscopy/biopsy, bloodwork, genetic test) are performed as you can have false negatives if you are already gluten-free. The tests aren't perfect so you can have false negatives anyway or just be gluten intolerant which won't show up on any test either. It could be food allergies/intolerances as well. It really comes down to how important it is for you to have a formal diagnosis.

A lot to think about and check out but it sounds like you are on the right path!

[taterhart]

Thanks Janet, for your reply.

I'm not too worried about a formal diagnosis, especially for myself. It's become pretty obvious that I have reactions to gluten, and now dairy. (I read that the chance of false negative for celiac is pretty high. My reactions to eating toast made in our regular toaster, and the crazy itchy rash that went away when the gluten did are diagnostic enough for me.) And I just found out that milk allergy runs in my family (I didn't grow up in my family, so I didn't know).

I decided to go ahead and have the kids go dairy free for a trial about 3 days ago after I had read that dairy can cause constipation, along with my new-found issues. I just feel crazy messing with their diets and not seeing any results. At first I felt so positive about this, like I was being a good, proactive mom. Now I just feel like a crazy lady! And my poor 6 year old daughter is just really hating all these restrictions!

[MaryJones2]

No need to feel like a crazy lady Everyone feels that way initially. It's a huge process of trial and error so don't get discouraged. It can take several months sometimes to really see a difference and think about this way - just ask yourself are things better or worse than last week or month and over time if it's working you'll see progress. As for your daughter, try to find some premade gluten and dairy free stuff. Bold Organics makes a really awesome gluten-free/df pizza and Pamela's makes some really great cookes that are dairy free.

[AGH2010]

Constipation (and only constipation) is how we ended up finding out that my daughter has celiac. She's 2.5 now and has been constipated since I can remember. She literally stopped having frequent bowel movements within 1 month of being born, despite being exclusively breastfed. Once she started eating solids, bowel movements became excruciating. She would go maybe once every 4-6 days and would need me to hold her while she pushed them out. I got the same spiel you did from multiple pediatricians about diet and not enough water. She was literally eating half a dozen prunes a day and drinking many ounces of water and they still told me that it was just a diet issue.

A few months ago, she started going over a week without bowel movement so I had to resort to suppositories. This time the pediatrician told me to give her Miralax. Fortunately she gave me no directions and I ended up giving her a very low dose over a long period of time so it still didn't help. That's when I was finally referred to a GI who tested her for celiac and boom, she came back positive. Total shock.

I was hoping to avoid an endoscopy so I took her to a few more GIs to see if anyone would diagnose her based on the blood work alone. And one GI at UCLA flat out said, "Interesting that the first dr tested her for celiac based on constipation alone. I wouldn't have done that."

So I'm beyond grateful that our first GI actually bothered to test her for celiac along with all the allergies (which she came back negative on). Sounds like many doctors would have missed it entirely.

She has been on Milk of Magnesia since May and is having regular BMs for the first time in her life. We are scheduled for an endoscopy on Mon so we haven't gone gluten-free yet to figure out if it will fix the constipation so I can't help you on that front.

But wanted to let you know that for sure celiac can present itself in nothing but constipation. My daughter never complains about stomach pain and has been growing according to schedule, so none of the other symptoms some doctors expect to see with celiac.

The blood test is so easy that it might be a good place for you to start with your kids.

[taterhart]

Unfortunately, the kids have already been off gluten for about 2 weeks.... would a blood test still show positive if they've been off gluten? Based on my symptoms, the rash, autoimmunity, etc, I feel pretty convinced that I could be a full blown celiac, so I want to make sure I do this right by my kids. I grew up a foster kid, and unfortunately had no opportunity to learn about my family's medical histories until the last few years, and most of that is secondary since many family members have passed away. I have no way to know if anyone of my other relatives have dealt with celiac. But I do know that I, personally, will not go back to gluten after ingesting some 2 weeks after going gluten-free and getting horribly painful stomach cramps and indigestion. NO THANK YOU.

[AGH2010]

My husband got tested after being gluten-free for only 10 days and it came back negative. His dr said it was unlikely but possible that 10 days was long enough for it to come back negative so he put him back on gluten to retest him.

So if you did want to test them, you would probably be asked to put them back on gluten.

[MaryJones2]

LOL I don't blame you. If it's important to get a formal diagnosis for your kids then yes you need to put them back on gluten and see a Dr. as soon as you can (the longer you keep them gluten-free the harder it will be to get a proper diagnosis). I don't have kids so I can't speak to how they diagnose the little ones but I assume they do a blood test and not an endoscopy. Perhaps someone else can give you more details on that piece.

It sounds like you are OK not having a formal diagnosis so that's good. You'll find many people here who are the same way and I personally feel that if your body says it doesn't like something then listen You might consider genetic testing to see if you all have the genes - it doesn't mean that you, or any of your family members, actually have celiac it is however a good thing to know if you carry the genes.

[MaryJones2]

That's when I was finally referred to a GI who tested her for celiac and boom, she came back positive. Total shock.

I was hoping to avoid an endoscopy so I took her to a few more GIs to see if anyone would diagnose her based on the blood work alone. And one GI at UCLA flat out said, "Interesting that the first dr tested her for celiac based on constipation alone. I wouldn't have done that."

Positive bloodwork is a diagnosis of celiac. I'm not sure false positives can happen - however false negatives are very common. It is odd to me that a GI (or more than 1 in this case) would think they need to scope a toddler unless she is having other problems outside of celiac. Did they give you a reason for doing it? (like wanting to assess damage or did they tell you it's the only way to positively diagnose). Also, many uneducated doctors think that you can't have celiac unless you have diarrhea which isn't true - many celiacs present constipated.

Edited to add a few links supporting blood test only diagnosis without biopsy in children:

From 2005: "Some researchers are making a case for dropping the biopsy requirement if the antibody blood work checks out in children, for whom (and for the parents) endoscopy and biopsy is a major issue." Link: https://www.celiac.com/articles/978/1/So-Why-Do-Celiacs-Still-Need-Biopsy-By-William-Dickey-PhD-MD-FACG/Page1.html

From 2011: "This month the Open Original Shared Link reports children who have the celiac gene and test positive in serologic (blood) testing, may not need to have the biopsy." Link: Open Original Shared Link

Celiac Center in Maryland: "The current diagnostic tests for celiac disease are very accurate, particularly when tTG and anti-endomysial antibodies are elevated. The isolated presence of anti-gliadin antibodies does not necessarily imply that the subject is affected by celiac disease, with the exception of children under the age of 2 in which tTG and EMA may not be present. " Link: Open Original Shared Link

Taterhart, the last link also provides information on genetic testing:

"As an autoimmune disease, celiac disease is the consequence of the interplay between genes and the environment (gluten). We don’t know all the necessary genes to develop celiac disease; however, HLA DQ2 and/or DQ8 are absolutely necessary to develop the disease. Since 1/3 of the general population also have these genes, the presence of DQ2 or DQ8 does not imply that the person will develop celiac disease, rather, that they have a genetic compatibility with celiac disease. Conversely, the absence of DQ2/DQ8 almost certainly rules out celiac disease. "

[AGH2010]

I presented all 3 GIs with the same information as the links youve pisted. Even told them that regardless the outcome of the biopsy I plan on having her gluten-free. All 3 GIs gave me the speech about endoscopy being the gold standard. We originally decided to skip it but after a week decided we didn't want to have her celiac diagnosis dismissed for the rest of her life by virtue of us skipping the endoscopy. Even my cousin who is a doctor urged me to do the endoscopy.

My daughter starts preschool in the fall. I want her to be gluten-free by then so she gets used to her alternative eating habit.

In the interest of putting it behind us, and also to get a better understanding of whether her gut has suffered damage already, we've decided to go forward with it.

Im very nervous, not so much of the procedure as the separation because she's only 2 and very attached to me. But hopefully we can turn the page on this chapter of our lives once the endoscopy is over.

[MaryJones2]

Im very nervous, not so much of the procedure as the separation because she's only 2 and very attached to me. But hopefully we can turn the page on this chapter of our lives once the endoscopy is over.

I guess that was my concern. It just seemed so invasive given the fact her blood work was positive.

[mamaupupup]

Hi there! I'll try to write more later...for now a quickie:

It was super helpful for us to have endoscopies for our kids: we found two additional health issues with one of our kiddos==which has also helped me help my daughter a LOT more in addition to dealing with going gluten-free! We wouldn't have known about the other things (gastritis and low digestive enzymes) and wondered why her belly aches weren't going away...

xoxo

[Mom-of-Two]

My 8 year old had positive celiac blood work (tTG and EMA), but a normal biopsy. Two GI docs wouldn't diagnose with celiac despite the fact that I myself have celiac. We followed up 3 months after her intitial tTG test (which was 78.20, normal <20), and her tTG level was then 44 - BUT, she had been gluten free at home for 2-3 weeks time by then. She also had a positive EMA test, although the GI said it was "minimally positive"- her results was 1:40 with 1:10 being normal. Also came back Vitamin D deficient, so all of that info combined, she is now going totally gluten free for the start of the school year. We will re-check tTG in 4-6 months to see if they normalize, thereby giving us our own stupid diagnosis!

The nurse said that yes, only 2 weeks in kids is long enough to decrease antibody numbers quite a bit, because they just heal so much faster, all I know is my daughter's tTG went from 78.20 to 44 in 3 months, with the only change being gluten free at home for 2-3 weeks time (she ate gluten occasionally out at a party, etc maybe a few times a week prior to testing).

Our home is gluten free anyway so re-testing her later would likely give us negative results. So she is celiac and gluten free, according to us

[mommida]

if there is a lot of damage to heal, two weeks isn't long enough to show a 'full' improvement.

my guess, you will have an accidental "glutening' and then you will know for sure. (if they are symptomatic)

[AGH2010]

My 8 year old had positive celiac blood work (tTG and EMA), but a normal biopsy. Two GI docs wouldn't diagnose with celiac despite the fact that I myself have celiac. We followed up 3 months after her intitial tTG test (which was 78.20, normal <20), and her tTG level was then 44 - BUT, she had been gluten free at home for 2-3 weeks time by then. She also had a positive EMA test, although the GI said it was "minimally positive"- her results was 1:40 with 1:10 being normal. Also came back Vitamin D deficient, so all of that info combined, she is now going totally gluten free for the start of the school year. We will re-check tTG in 4-6 months to see if they normalize, thereby giving us our own stupid diagnosis!

The nurse said that yes, only 2 weeks in kids is long enough to decrease antibody numbers quite a bit, because they just heal so much faster, all I know is my daughter's tTG went from 78.20 to 44 in 3 months, with the only change being gluten free at home for 2-3 weeks time (she ate gluten occasionally out at a party, etc maybe a few times a week prior to testing).

Our home is gluten free anyway so re-testing her later would likely give us negative results. So she is celiac and gluten free, according to us

We find ourselves in the same boat. Positive ttg and EMA, negative biopsy. GI said she was 'fairly confident' she didn't have celiac. Told me I could have her gluten-free if I wanted but I didn't need to be strict. Seems highly suspicious to me that a 2 year old would have antibodies to gluten for no reason so I'm going to take her to a GI in San Diego who is the director of the Celiac Center there to get a second opinion.

[Mom-of-Two]

^^^ Just beware if the second opinion tells you the same! I felt the same way after our pediatric GI told us she doesn't have celiac, "if" she does it is latent celiac and you don't need to change her diet, just need to re-test every 6 months and watch for symptoms. I was unhappy with that advice, obviously, so off we went to the Cleveland Clinic, where my own celiac dr is, lo and behold, this fabulous guy had the same opinion! He did her tTG over and tested EMA, vitamin D, iron, CBC. He also requested the biopsy slides and his pathology double checked them, all normal. He said to me I simply cannot diagnosis her with celiac, with a normal biopsy. I was beside myself! I have celiac, my kid has the antibodies, and COULD have damage for all we know, since it is often so patchy in children.

If I understand correctly, doesn't EMA coorelate to intestinal damage? Would a child with normal healthy villi have endomysial antibodies?

[AGH2010]

^^^ Just beware if the second opinion tells you the same! I felt the same way after our pediatric GI told us she doesn't have celiac, "if" she does it is latent celiac and you don't need to change her diet, just need to re-test every 6 months and watch for symptoms. I was unhappy with that advice, obviously, so off we went to the Cleveland Clinic, where my own celiac dr is, lo and behold, this fabulous guy had the same opinion! He did her tTG over and tested EMA, vitamin D, iron, CBC. He also requested the biopsy slides and his pathology double checked them, all normal. He said to me I simply cannot diagnosis her with celiac, with a normal biopsy. I was beside myself! I have celiac, my kid has the antibodies, and COULD have damage for all we know, since it is often so patchy in children.

If I understand correctly, doesn't EMA coorelate to intestinal damage? Would a child with normal healthy villi have endomysial antibodies?

Aha. So even the celiac experts feel that way... I do wonder whether it's worth it for me to drive the 2 hours with my 2 year old just to hear the same thing.

I don't understand how the antibodies could not be harming her, esp since her ttg count had gone up considerably when she was retested just 6 weeks after she was first tested.

[Rachel Kokosenski]

Be careful with all that Miralax. It can do damage to their intestinal wall lining! My son, age 8, also suffered with lots of constipation. We went gluten-free, casein-free in Nov. 2011 and it took until about May 2012 until we saw very clear changes in him. He still battled with constipation for a very long time, until we took rice out of his diet and then he started going daily (without the help of Miralax)! We also use a homeopathic remedy, Secretin, that is actually a prescription from our special pediatrician.

My advice, and I'm not a doctor, would be to find either a pediatrician that specializes in the "autism diet" of Gluten-free Casein-free, and/or a pediatric gastroenterologist that understands the gastrointestinal issues associated with Autism. (I realize your children may or may not have autism, but these specialists are very knowledgeable about all sorts of autoimmune diseases.) I personally found that regular doctors and dietitians don't "get it" and think the kids will be fine with some apples...