Please Advise...ftt Baby

[skysmom]

I have an almost 18 month old son who has had many problems since birth. He was born with severe reflux, which he finally grew out of when he was 11 months old. He has always been a horrible sleeper until recently(took him off dairy and soy, helped a bit). He has been below the 5th percentile on the growth chart since he was 5 months old and gains weight verrrrrry slowly. I quit breastfeeding him when he turned 1 yr old, and since then has had very mushy, light colored stools, often with large chunks of food in them, and sometimes a weird sandy texture. He has not grown at all in the last 4 months and looks very skinny. He gets sick often and I am constantly trying to build his immune system with vitamins, etc. He has a very small appetite and has pretty much self-regulated his diet to fruit, veggies and meat. He is dairy and soy intolerant and i assume other things i have yet to determine. had him allergy tested twice, and the only thing that showed up was an egg allergy, although I know he reacts to dairy and soy(horrible diaper rash, eczema, diarrhea). We had him tested for celiac a couple months ago(bloodwork) and the doctor called me with the results and told me they were negative and that the bloodwork panels were accurate tests!!!!! i requested the paper work and it looks like he only tested two or three different things, not even the whole panel. Then he basically blew me off. The more i research and learn how the blood work is NOT always accurate in young children the more i think this could still be celiac disease.

Just want to mention that I have two other children who were always in the 90th percentiles, and are still very tall for their age. We have very tall genes from both sides of the family and i know this growth pattern in my child is very abnormal and that something is wrong. I'm currently looking for a new pediatrician and ped. gi doctor since they both are pretty much worthless to me at this point.

My 7 yr old son also has chronic stomach aches, acid reflux,behavioral problems, constipation, and constant insatiable hunger. He literally eats more than my husband and is very skinny(but tall). It's becoming a serious issue because he' s so hungry and food obsessed all the time. Pediatrician told me he's just a growing boy. I also have undiagnosed stomach "problems", and lot of other symptoms. So a lot of things leading me back to this. I guess I'm just trying to get reassurance that I'm not a hypochondriac, as I have been called and that I should persue this more. I have done a 5 day gluten free trial on my 18 mo old and did notice some firmer stools, the only reason i haven't continued is my DH would like a proper diagnosis before i eliminate anything else out of his diet, and it would be much easier to stick to 100% gluten free if i know that is what it is for sure.

Sorry for the long post. One more question, we cannot afford the entire Enterolab panel at this time, but I believe that I've read there is a stool test that is 99$ that checks for gluten intolerance? Does this just tell if you're intolerant or can it diagnose celiacs as well?? I realize either way it means 100% gluten free diet, and I may just have to put him on a gluten free diet for a longer period of time anyway to see if i get results.

Anyway, any advice or suggestions would be very appreciated as I am getting very worried about my little one and am willing to do whatever for the sake of his health. I really sick of talking to doctors that seem to dismiss all the symptoms and problems my family has had.

Thanks.

[AndreaB]

The whole gluten intolerance panel which includes the gene testing, ttg, IgA, malabsorption (and possibly still dairy at n/c) is $369. I'm not sure what the $99 one covers but I'm sure it's listed on their site. Open Original Shared Link

[celiacgirls]

I started with just the $99 stool test from Enterolab for gluten intolerance. There's also a $20 shipping and handling fee. This is what they advised me to do. Since then, I have tested for casein intolerance. I found out they keep the sample for 6 months and you can order additional tests during that time without having to do another sample.

My story is similar to yours in that I suspected my younger daughter of celiac disease since she was about 9 months old. My grandmother had celiac so I couldn't get it out of my head that her tummy/diaper issues were related to wheat. I noticed that her diapers changed when I introduced wheat. It wasn't enough for DH to be convinced but when I mentioned it to the doctor, they mentioned celiac. The blood tests were negative. I tried to eliminate gluten and they were better. Because her tests were negative, DH thought I was making a big deal over nothing and looking for problems. I didn't know then what I know now and I let myself be convinced. When she was older, she complained that her tummy hurt. It wasn't crippling but it was a constant complaint. Again, she was tested and it was negative. Again, she tried the diet and said she felt better. And again, I let myself be convinced she didn't need to be gluten free because the testing was negative. This repeated several times over the years and finally I discovered Enterolab. Now I know she needs to be gluten free and strict.

Long story, but if I had known about Enterolab, I would have done it many years ago. It does make it easier to be strict and to stick with it. I don't think you are being a hypochondriac. Trust your mommy heart. If it makes you or your DH feel better, do the Enterolab and find out for sure.

My understanding is that celiac disease means damage to the small intestine so the Enterolab test checks for gluten intolerance only. There may or may not be damage to the intestine. I only did the basic test so maybe some of there other tests can tell about intestinal damage.

[Guest nini]

my daughter was also ftt, and her blood tests were also negative, but again, idiot dr. didn't do the entire Celiac panel either.

my husband and my daughter's pediatrician were both convinced after her dietary trial. she had me do a strict gluten-free diet for 3 weeks, it was a MIRACLE... then challenging with gluten afterwards, so obvious. I'm a big advocate against the biopsy especially in children, positive dietary response is the most valid diagnostic tool and it is a healthy diet and your husband WILL come around. Mine did. He couldn't deny the improvement in her health once the gluten was out of her system and the obvious symptoms when she is accidentally glutened.

my advice, get pediatricians support and just try the diet, don't bother with any other testing, this way you don't end up with a "pre existing condition" on medical permanent record that can cause child to be denied health insurance coverage, and Yes it really does happen.

[azmom3]

Sounds like I could have written the post! You're not a hypochondriac...I feel the same way sometimes, but then remind myself that I'm just trying to make us all better. As far as the allergy testing goes, did you do just the skin testing or the blood testing as well? The reason I ask is that my son (22 months), had both and the blood showed a lot more than the skin (which is usually just a basic starting point). The skin showed he wasn't allergic to milk, but he was throwing up everytime he had it...the blood test showed he was allergic. I think it tests for different stuff in the milk??? There were others like this, too. The blood test really was a lot more thorough. Good luck!

[skysmom]

I just wanted to thank you all for replying and for validating my concerns. I am seeing a new ped. next week who specializes in diet/nutrition and is suppose to be really great. So hopefully she will have a lot of knowledge that can help my son.

the allergy testing my son had was the skin prick test that only showed a allergy to eggs. Every thing else was normal. He also had the rast blood test done for wheat, soy, and dairy and all three came back normal or at a zero?? Anyway, the Dr. said he definately could still be reacting to these, but they were intolerances so they didn't show up on this type of testing.

Anyway, thanks again!!!

[Guest nini]

I had the blood testing for food allergies and it showed absolutely NOTHING, but then several months later I was dx'ed with Celiac, which is totally different from an allergy and won't show up on allergy testing at all.

[susan p-r]

I have an almost 18 month old son who has had many problems since birth. He was born with severe reflux, which he finally grew out of when he was 11 months old. He has always been a horrible sleeper until recently(took him off dairy and soy, helped a bit). He has been below the 5th percentile on the growth chart since he was 5 months old and gains weight verrrrrry slowly. I quit breastfeeding him when he turned 1 yr old, and since then has had very mushy, light colored stools, often with large chunks of food in them, and sometimes a weird sandy texture. He has not grown at all in the last 4 months and looks very skinny. He gets sick often and I am constantly trying to build his immune system with vitamins, etc. He has a very small appetite and has pretty much self-regulated his diet to fruit, veggies and meat. He is dairy and soy intolerant and i assume other things i have yet to determine. had him allergy tested twice, and the only thing that showed up was an egg allergy, although I know he reacts to dairy and soy(horrible diaper rash, eczema, diarrhea). We had him tested for celiac a couple months ago(bloodwork) and the doctor called me with the results and told me they were negative and that the bloodwork panels were accurate tests!!!!! i requested the paper work and it looks like he only tested two or three different things, not even the whole panel. Then he basically blew me off. The more i research and learn how the blood work is NOT always accurate in young children the more i think this could still be celiac disease.

Just want to mention that I have two other children who were always in the 90th percentiles, and are still very tall for their age. We have very tall genes from both sides of the family and i know this growth pattern in my child is very abnormal and that something is wrong. I'm currently looking for a new pediatrician and ped. gi doctor since they both are pretty much worthless to me at this point.

My 7 yr old son also has chronic stomach aches, acid reflux,behavioral problems, constipation, and constant insatiable hunger. He literally eats more than my husband and is very skinny(but tall). It's becoming a serious issue because he' s so hungry and food obsessed all the time. Pediatrician told me he's just a growing boy. I also have undiagnosed stomach "problems", and lot of other symptoms. So a lot of things leading me back to this. I guess I'm just trying to get reassurance that I'm not a hypochondriac, as I have been called and that I should persue this more. I have done a 5 day gluten free trial on my 18 mo old and did notice some firmer stools, the only reason i haven't continued is my DH would like a proper diagnosis before i eliminate anything else out of his diet, and it would be much easier to stick to 100% gluten free if i know that is what it is for sure.

Sorry for the long post. One more question, we cannot afford the entire Enterolab panel at this time, but I believe that I've read there is a stool test that is 99$ that checks for gluten intolerance? Does this just tell if you're intolerant or can it diagnose celiacs as well?? I realize either way it means 100% gluten free diet, and I may just have to put him on a gluten free diet for a longer period of time anyway to see if i get results.

Anyway, any advice or suggestions would be very appreciated as I am getting very worried about my little one and am willing to do whatever for the sake of his health. I really sick of talking to doctors that seem to dismiss all the symptoms and problems my family has had.

Thanks.

Your note reminds me of my own situation with my son about 13 years ago. He was losing weight, screaming in pain each night, and had been miserable from the time he was six months old. He had inconclusive biopsy and a couple of positive blood tests, and a really abnormal stool study. We went gluten-free anyway. He is now 15 1/2 years old, above average for his height, normal weight, and physically, mentally, and emotionally fit. His pediatrician has never believed his diagnosis. I recommend that you get in touch with a pediatric gastroenterologist who specializes in Celiac Disease. Our gastroenterologist was willing to go with the Celiac diagnosis because our son responded to the diet and started eating and growing. If you fear the "stigma" of the diet, weigh that against your child's well-being. Kids can learn to cope - my son once solemnly assured a classmate that his nose would turn purple and fall off if he ate any gluten. I think he was around 11 or 12 at the time, and thought it was really funny to see the response he got! So keep persisting, and trust your instincts. I hope you have the same results as we. It's not easy, but the diet and lifestyle have helped him immensely.

[skysmom]

I've definately gotten the most valuable info. and advice from this board and think it's sad that no Dr. I went to with my concerns even touched on any of the info. I read here. Thank goodness I found it! I am currently looking for a new ped. gi Dr. and have to do more research on the ones in my area that are Celiac knowledgeable.

I have decided to go ahead and do the gluten-free diet for my son for AT LEAST 30 days and see what happens. I've already found some great gluten-free recipes that I experimented with and have been buying gluten-free pasta, bread, etc. Now just to do it and make everybody else stick with it. At this point I have nothing to lose.

Thanks for your posts, and feedback.

[TCA]

Keep in mind that you might not find a positive diagnosis. My son's blood tests were inconclusive and 3 biopsies were negative. We finally tried the diet and the changes were miraculous. I found out that testing in kids under 5 are often inconclusive. It took 3 weeks for normal stools. If he gets gluten accidentally, he had D uncontrollably. That's confirmation enough for me. Good luck.

[susan p-r]

I've definately gotten the most valuable info. and advice from this board and think it's sad that no Dr. I went to with my concerns even touched on any of the info. I read here. Thank goodness I found it! I am currently looking for a new ped. gi Dr. and have to do more research on the ones in my area that are Celiac knowledgeable.

I have decided to go ahead and do the gluten-free diet for my son for AT LEAST 30 days and see what happens. I've already found some great gluten-free recipes that I experimented with and have been buying gluten-free pasta, bread, etc. Now just to do it and make everybody else stick with it. At this point I have nothing to lose.

Thanks for your posts, and feedback.

Another thought that I had last night as I reflected on our own experience - I kept a detailed journal of what my son ate, how well he slept, his mood, and his stools. It was a time-consuming exercise, but it was really helpful. Often the diagnosis is in the details of the history, and sometimes a pattern emerges that makes it all so obvious, but without that journal you wouldn't see it. I used a calendar that had lots of room for each day so I could be as detailed as needed. Whatever you can do to help in providing the history of your son's responses to diet and environment, the more readily the diagnosis will be reached. It will also help you as you move forward to see all the details of the lifestyle that are so critical to maintaining good health. Remember that your approach of detailing the symptoms will help any doctor get to the point faster. The fact of the matter is that Celiac disease is not common enough even now for doctors to look for it, and since the disease can have so many different manifestations, it's even harder to pinpoint. Hope this helps!