I Don't Know What To Expect

[dkelm]

I don't know where to start, so I'm going to lay out my story and hopefully someone can give me input. My son, Matt, is 21 months old (Sept 2008 b-day), he is my third child. My other children never had any problems and I have done the same for him that I did with them. I breastfed Matt until he was 16 months old and waited to start him on solids until he was 12 months old. Between his 12 month and his 15 month appointment he had only gained .2 pound, he had lost a pound during those 3 months. Somewhere in that timeframe he had gotten sick. He had a double ear infection, which caused me to take him to the doctor. She put him on amoxicillin, and he started throwing up. A LOT. I took him back in and they said he had a tummy virus (I didn't think so), a week later he was still puking so I took him back in and they said it turned into gastritis. I was told to give him mylanta or a prescription of Zantac. He just kept puking. He was puking so much and continued puking like 7-10 times a day. He was puking so much I was carrying around a puke bowl. He still had runny stool, but I attributed that to our continued breastfeeding and slow start to solids. He puked so much that his gums sometimes bleed when I brush his teeth and his front teeth look so bad. I am embarrassed because people probably think that I don't brush his teeth, but I do!! I changed him from whole milk to soy because I thought maybe he was lactose intolerant, that's when his throwing up started to decrease, he still throws up, thankfully not as often as he was, but up until recently it was still several times a week. Now it's just a couple of times a month. But he ALWAYS has diarrhea. His poop goes from pure liquid to very soft. Sometimes it even seems like he has sand in his poop, but we haven't been around sand. He poops just a couple of hours after eating and it is always what he just ate. (Is that normal?) So after months of taking him into the doc and being told he has a sensitive tummy, I finally had the last straw after he puked up right after eating the other day. I went in and saw a new doctor who referred him to a GI (we have an appt on Fri). She wants him allergy tested for dairy and soy and then tested for Celiac. I hadn't really heard about it until then. He also is tiny compared to my other kids - he is below the 5th percentile for height and weight and my other kids were much bigger at this age. When Matt was just 9 months old he had man boobies, he was so chunky and so cute. He had tan lines in his little arm fat rolls. Now he looks like an alien with his big head and small body. You can definitely see a difference in his weight if you look at comparative pictures from before 12 months to after 15 months. His belly is so huge that people always comment on it. I thought it was because the way my kids backs curve, but when I look at it he really does have a huge beer belly. He is always farting and boy does his farts and his poop stink. Really bad. I never met a baby that could clear out a room like he does.

Anyway, I just don't even know what to expect at this first appointment. I know not to change his diet until after the doctor sees him, but other than that I don't know what to expect. I don't know what questions to ask, what is normal for diagnosing a patient this young, etc. I just want to be a little more informed and well prepared. I had to change doctors just to find one that would listen to me, so right now I don't have a lot of faith or trust in doctors.

I'm not going to say he has Celiac until a doctor tells me so, but at the same time I just have this feeling that he does. I feel almost resigned and depressed because I just don't know what to do. It's really overwhelming. I'm not sad or depressed overall, just not sure where to start and I'm finding that depressing.

[Rondar2001]

I know its scary right now, but take some comfort that you are working to find out what is wrong. The GI will likely order blood tests and maybe a biopsy. Although not everyone chooses to go ahead with the biopsy, we did just to make sure there was nothing else going on. Also realize that tests in a child this young may come out as a false negative. In that case you can try going gluten free to see if it helps.

If you do go gluten free this website is a great resource as is your local celiac chapter. Also realize that it does get much easier and that you would have caught this early and before alot of damage was done.

Good luck and I hope you get some answers soon.

[scarlett77]

I know almost exactly what you are going through since it so similar to my own story with my son. To give you the run down of what I experienced: Born 11/3/07 at almost 9lbs stayed in the 70-90% range until solids introduced at 6months then started going down. By 15months he finally hit 20lbs (quit BF around 14 months), at 18 months dropped 1lb by 20months barely gained the 1lb back but was only 27" tall also so he was under 3% for both height and weight. Referred to GI. Bloodwork came back positive for Celiac as well as low thyroid and anemia. At 23 months had endoscopy to confirm Celiac diagnosis. His tummy was distended, and he was constantly sweating (even in cold weather), slept ALOT, pale, and his hands were usually cold. His poo was all over the place...had just about everything from black rabbit pellets to white formed and comlpetely grass green explosions.

Now I will tell you what happened AFTER we got the diagnosis. He gained 3lbs and 3 inches in less than 3 months. He looked better and had more energy. At last check at 30 months he was 26.5lbs and 33.5" tall...still on the smaller side but he is now back on the charts. I cannot recommend enough researching and reading everything you can get your hands on. The diet is a major component for treatment for Celiac and it is very frustrating especially in the beginning. It is actually not too hard to do especially at home and if you like to cook. Check and re-check everything you eat or put on your skin or anything that comes into contact with him (for example your lipstick might be ingested if you kiss him). The easiest thing is the simpler the ingredients the easier (and more healthy) it is. I decided to make my household gluten free to eliminate cross-contamination issues and to just work on getting him to eat normal foods (he had reverted to an almost all liquid diet at one point). Some people don't do it, but it works for me. There are a ton of resources to find great recipes to make great gluten free meals from cakes and cookies to fried chicken and mac & cheese. I find the food part is easier than the rest of it though. Beware of non-food items like playdough, soap, glue, etc.

These boards have a wealth of information. I also highly recommend reading blogs from the Gluten Free Girl & the Chef. It really helped me to get through the diagnosis of my son emotionally and gave me such a new refreshing look at food. There is so much naturally gluten free good food out there. Google search has been a wonderful resource for me to find gluten recipes for my favorite glutenous dishes.

*Hugs* and I hope you find the answers to help your little one.

[StephanieL]

Have you tried a month or so of probiotics to see if that heals his gut? I had a friend whos daughter had something like this going on. After a month of probiotics, she is 100% fine, gaining weight and growing like a weed. I only say this because it happened right after the antibiotics.

hth and sorry you are going through this. It is tough!

[dkelm]

Have you tried a month or so of probiotics to see if that heals his gut? I had a friend whos daughter had something like this going on. After a month of probiotics, she is 100% fine, gaining weight and growing like a weed. I only say this because it happened right after the antibiotics.

hth and sorry you are going through this. It is tough!

We did try a probiotic and it doesn't seem to help at all. He was only on the antibiotic for 2 days when it started and that was about 8 months ago. Would something like that still be causing issues?

[dkelm]

Thanks for all the responses. We had an appointment yesterday. The doctor was really nice and very compassionate, which helped. He said everything is spot on for Celiac, but is doing other tests first. We started out with a lot of blood work and stool samples. He is testing for pretty much everything, including liver function, kidney function and malabsorption. He gave us a special formula called Ele Care to give to him for now, instead of soy milk. He asked us to cut soy and dairy out of his diet for the next two weeks and he also ordered an upper gi with a small bowel follow through - which is scheduled for Thursday. After that, he will talk to us again in 2-3 weeks and see how things are. After that he said the next step is scheduling an endoscope biopsy. So for now, we at least have some direction. Man, milk and soy are in everything. If milk is not in it, soy is. Ay yi yi. I do like to cook, so it's not going to be a major problem, but I have to find some sort of substitute for butter, because we do love our butter. I also think he does not like that formula. We had a really nice sandy, gritty poop this morning. Fun.

[StephanieL]

A GOOD probiotic for a month or so every day may help (like I said, I have no idea if it would work but figured it was worth a try.

That seems like a lot of testing for a little one. Are they going to do a Celiacs biopsy when they do the endoscopy? It seems a little rushed and possibly premature to do it when you don't even have blood work to back up such a procedure.

As for butter, Earth Balance has a soy free, dairy free spread. If you do need to go gluten free, I am not sure it is. Maybe someone here could answer that. Also, we are a soy and dairy free home (with a long list of other allergies) so if you need any help, I would be glad to try and help with some substitutes and whatnot.

Hugs!

[dkelm]

A GOOD probiotic for a month or so every day may help (like I said, I have no idea if it would work but figured it was worth a try.

That seems like a lot of testing for a little one. Are they going to do a Celiacs biopsy when they do the endoscopy? It seems a little rushed and possibly premature to do it when you don't even have blood work to back up such a procedure.

As for butter, Earth Balance has a soy free, dairy free spread. If you do need to go gluten free, I am not sure it is. Maybe someone here could answer that. Also, we are a soy and dairy free home (with a long list of other allergies) so if you need any help, I would be glad to try and help with some substitutes and whatnot.

Hugs!

Oh shoot, I'm sorry if I wasn't clear. The doctor ordered a ton of blood tests, including a celiac blood test and a whole range of others. Since I'm still really ignorant on all of this, why does it feel rushed? I'm sitting here feeling like it's taking forever while my child is still not feeling well.

Thanks for the recommendation for the spread. I will probably go out today and buy it. I was also looking at trying to bake with goats milk. I wonder if there is a goats milk cheese? I have already noticed some differences since taking him off soy - but not major differences.

[scarlett77]

I know the feeling...you just want the answers now so that you can figure out how to help your baby. The answers just can't seem to come fast enough. I don't think anything is too rushed. I think that you are on the right track and your doctor seems to be competent and thorough.

I do want to say that you do NOT want to alter his diet before all the tests are done as it can have an effect on the tests.

Yes, there is goat cheese (and it is quite yummy). I'm not sure that you would find it at a local grocer, but you should be able to find it at any specialty deli or even at a wine bar/store.

[StephanieL]

I read it as the biopsy was already going to happen before the blood work was back but I reread and see that's not the case.

As for goat's milk....many people with a dairy allergy can NOT deal with goat's milk either. The proteins are very close. Is it an allergy or intolerance you are thinking? Also, I would stay off ALL animal derived dairy till you have some more time off dairy. If you want to trial in a while fine, but now when trying to figure stuff out I would not add anything new.