Hello.. Possible Celiac 2 Yr Old

[mat4mel]

Hi everybody..

Not sure if this is where we belong, but after doing alot of reading I think my 2 yr old dd Zoe may have Celiac, and I suspect my 6 yr old son does too. (my 3 yr old dd seems fine, but who knows). This all started back in January. My 2 yr old mainly nursed for a long time, eating some solids but not much. I became pregnant in November and my milk supply decreased, and she started eating more solids. In January I started noticing she was have loose bowel movements, frequently, no less than twice a day and sometimes 6 times a day! It seems like food just moves right through her sometimes. For instance, just last week she had a couple of poppy seed crackers (wheat) and 6 hrs later it all came out- poppy seeds and all. I have noticed mucus sometimes, and it has looked fatty several times. They have looked "bulky"... sometimes they look really thick and chunky like oatmeal, other times just like thin peanut butter. It looks sometimes like the food is just not digested at all. My dr has run a lot of stool samples, blood tests.. she has been tested for parasites, lactose intolerance, cystic fibrosis... I'm not sure what else. He is hesistant to test for Celiac until we see the GI dr in JULY! Yes. They reviewed her case and she can't get in until July. This really irritates me. I wish my regular pediatrician would just runt he blood tests for Celiac and see what comes up. I personally think he thinks her bowels are no big deal, and he has said "maybe she just sh**s alot". WEll i don't think her stools are "normal". I have also suspected food allergies but he won't run those tests either. As far as her growth goes, she was born large (9'11) but has always grown slowly. This did not concern me or the ped much because my other kids are small, but they were never as skinny as she is now at this age. She is 21 lbs 4 oz and 34 inches tall. Normal for height, but her weight is not even on the charts. She has been gaining, but slowly. This is one reason my dr does not think celiac-- b/c she is not a typical case that stops gaining altogether or starts losing.

The reason I suspect possible Celiac with my 6 yr old is b/c he has always been an EXTREMELY picky eater... ok so everybody says "that's normal" but my son only wants cheerios with milk for breakfast, PB&J for lunch and macaroni and cheese for dinner. (this is not his diet, but what he would like it to be). I have always offered a wide variety of foods and he has always hated anything else. If you put anything else in front of him he will pick at it forever.. macaroni and cheese he could inhale in about 30 seconds (literally!). This has been going on since he was atleast 2, maybe sooner. He has always been very pale and I have suspected anemia.

So maybe I am going in the wrong direction, but I strongly suspect Celiac or some sort of food allergies/intolerances going on here. Guess I am just looking for a place to vent, and wondering if anybody has any insight.

Thanks for listening to me vent if you read this far

Mel

[plantime]

Go with your instincts. You know that something is wrong with your children, do not let anyone tell you otherwise. If you have to, pay out of your pocket to see a different doctor. If it is celiac or a wheat allergy, the only treatment is a gluten-free diet. You do not have to have a doctor's note to do that. You simply stop eating foods that have gluten in them. It is not easy to find the hidden sources of gluten, but we are happy to help, and there are websites that are geared to helping with gluten-free living. You can go gluten-free and see if your children's health improves. The only drawback is that being gluten-free causes negative results on lab work. Enterolab does a stool test for celiac that does not require consuming gluten, but it is expensive, and you have to pay for it upfront. Just go with your instincts, they are your children, and you know them better than anyone else.

[mat4mel]

I have considered trying the gluten-free diet, but somewhere I have read it can take MONTHS to see improvement.. I cannot see just "trying" it for months when it could just be something else. Does that makes sense?

I wish we could just go to another dr out of pocket, but right now we are in a strange financial state and don't have extra money to spend on drs.

Now after reading the stuff on Enterolab, I'm not even sure if I should have the blood test done for her.

Mel

[plantime]

As young as your children are, you should see results in 4-6 weeks. The damage that takes months to reverse took years to happen. Enterolab's test is non-invasive, and you do not have to consume gluten for it. I fully understand weird finances! I have to know a month in advance if someone in my family will be going to the doctor! Just fix meat and veggies with fruit for snacks for two weeks, and see what happens. Even breakfast can be a yummy meal of bacon and eggs or the previous nights leftovers!

[ashlees-mom]

I agree that you should go with your instincts. With my daughter, we first noticed a growth problem. As a baby, she was always around or above the 50th%, by 2 she was at the 25th and by 4 she had about dropped off. She was gaining, but VERY slowly. It really irritates me when the Drs write that off, the charts are there for a reason, to detect if kids are growing different from their norm, and if she is dropping in the weight percentiles, that is a problem. My daughter then started with the very frequent diarrhea and then lost 3 pounds, which put her back at what she weighed when she was 1-1/2 (only now she is 4-1/2!) Wow, if they won't see her until July and you are limited financially (I TOTALLY understand that one) you might want to just go gluten-free, that is a long time to wait and make your child suffer. It took a couple weeks for us to really notice a difference. She is not 100% yet, but we can see a HUGE difference. She has gained back those 3 pounds, and a couple more to boot! Anyway, don't let a Dr tell you that just because she is not losing weight she can't have Celiac. Good luck I know it's hard!

[lauradawn]

Just keep in mind though, that if you want to have testing done for Celiac, you CANNOT be gluten free! You must be eating gluten, or the tests will not neccessarily be accruate.

[tarnalberry]

I just wanted to add that I used to always be able to see a bit of the food that went through me as well. (DEFINTELY true of corn, but I understand some of the cellulose in corn is undigestable, and I get NO symptoms from corn, so I'm not worried about that one) That's not so much the case any more now that I'm gluten-free. (If I have an accident, it'll happen again for a week or so.) I used to think it was normal and I just have a fast elimination system (for me, it was around 12 hours which _just_ falls within "normal" ranges), but I think it may have been gluten.

[mat4mel]

Thanks for all of your replies.

I am so hesistant to just try the gluten-free diet, b/c I am afraid it may just be food allergies. (or maybe a mixture of both.) I have thought of doing an elimination diet, which is just turkey, pears, rice, squash.. I couldn't make her do that diet for weeks! She would wilt away! Does anybody have any thoughts on whether this could be food allergies? My mother swears that my brother had food allergies that caused diarrhea as a child (but who knows, maybe he is Celiac too). I am going to call my dr first thing on Monday and INSIST that he do SOMETHING instead of making us wait until July. Do you think it is worth it to have the blood test done for Celiac? I know there are some blood tests you can do now for food allergies. I am going to insist on that one too, or atleast get an appt with an allergist in town.

To further complicate things, we are travelling 1200 miles to visit family in June for a month. They certainly will think I'm nuts, and it is going to be so hard and stressful adhering to a gluten-free diet when we're not at home. My MIL already thinks I'm downright crazy, and I wouldn't put it past her sneaking something to my dd that she wouldn't be able to have. Also, it is just plain stressful travelling anyway. Then, in August, I am having a baby! My poor dd is going to be going through so many changes.. it really makes me anxious to go ahead and try the gluten-free for the next 6 weeks while we are still home and semi-sane... but what if it's food allergies too? I guess Monday I could insist on her blood drawn for Celiac and food allergies, and *then* start the gluten-free diet while we are waiting for the results.. if there are food allergies, I can eliminate those too at the time (however it has taken 3 weeks to get some test results back for tests we have done... I don't understand it at all)

ERRR... just really irritated with drs right now! Thanks for listening to me vent. It's great to have a place like this to vent.

Mel

[plantime]

There is no reason why your doctor cannot do the blood test. Insist that they be done immediately. Your daughter should not have to suffer until July. I don't know what to tell you about your MIL! I am so fortunate, my MIL is an absolute angel!

[lauradawn]

Here's my 2 cents....... It sounds like you need to get really agressive about your daughters care. I would contact your Dr and insist on the findings of those other tests that were done, and I would insist that they do the blood work for celiac.

There is nothing that is 100% for sure. You could have the blood work done and it could be a falst negative, however there are rarley false positives. So if it came back very positive you would have somewhere to start. I personally am dx by blood work only. I chose not to have the biopsy done, although that is a personal decision. You have alot on your plate right now, but I would definately not this slide b/c someone in your dr's office wants to pass it off.

Keep in mind if you have the blood work done and then go gluten-free it will affect any other testing you may have done. It's ok to do that, as long as you are aware of that choice. You can't go back. I personally chose not to do the biospy and went gluten-free immediately. I don't regret that decision. I noticed changes almost immediately. I would most likely make the same decisions for my kids.

[kaylee]

Hi Mel,

I am currently trying to figure things out with my 18-month-old son and can really relate to all the questions/frustrations/uncertainties on the one hand and the intense desire to get things moving on the other. I fully agree that waiting until July is NOT a good plan - for your daughter, for you , for your family for obvious reasons.

We were so concerned about our son's symptoms that we charged ahead and removed wheat from his diet because we figured that his problems were linked to something he was eating on a very regular basis. Unfortunately I hadn't done all the research on celiac disease that I have since done, so by the time he was tested he had already been gluten-free for a while. You obviously have to decide how best to convince your doctor of the importance of the testing, probably also emphasizing the fact that you would like to try the gluten free diet for her for a while and that the testing therefore must be done before she is gluten-free.

But that's not my point - my point is this: the results of removing gluten from our son's diet were so amazing that it became obvious within about 5 days that we were on to something. After 10 days there was no room left for doubt that gluten had been having a major and very negative impact. Although the change in eating habits is very big and requires a lot of thought and inhabitual preparation to start with, if gluten IS a problem then you will be delighted by its removal, even if complicated to get used to, because of how much better your daughter will feel. You could go the elimination diet way, but you could also just start going gluten-free and wait for a few weeks to see whether there are any positive changes with just that. There will be time to eliminate other things along the way. We eliminated dairy products after a week without gluten and that was clearly also a good move here for now, but everyone is different.

Although your situation with travelling and your mother-in-law sounds stressful, maybe rather than thinking about how stressful it is it would help to focus on seeing the diet as an initially short-term experiment - try ot out and see what happens! There are all sorts of things for children to eat that are gluten-free and appetizing. ALso, rather than wasting away with a restricted diet, if gluten has been a problem then your daughter could quite possibly start to gain some weight.

Best,

Kaylee

[mat4mel]

I am so mad right now I could scream!! My dr's office must think I am a nut. I left a message this morning saying that I needed to speak with Dr. Davis etc. etc.... now a nurse just called being really smart, thinking I'm just some crazy parent that is insisting on talking to the dr. Well I told her I have seen Dr Davis several times over this matter, and I thought I needed to speak to *him* but she was like "oh sure" and I don't think she is taking me seriously at all. I told her briefly that her GI appt was not until July and I wanted Celiac testing done NOW and also a referral to an allergist. She was like, and these are all Dr Davis's ideas? I said we have spoken about them before, blah blah blah. Who KNOWS what kind of a message she will leave for him! I am so furious! I just want to talk to the Dr for a few minutes!

I don't know what to do! I want to cry and scream all at the same time!

ERRRRRRRRRRRRRRR!!!!!!!!

Mel

[plantime]

Be prepared to have to make an appointment. Some nurses/receptionists will tell you that you have to have an appointment. If you have a real good doctor, he will call you back at the end of the day to talk to you. They rarely have time to take phone calls during the day. He might even call you tomorrow morning. Just try not to let them get you in a tizzy!

[mat4mel]

Sorry.. I didnt mean that I wanted to talk to him right then.. I just wanted him to get the message that I wanted to speak to him, and at the end of the day or the next morning would be fine. I told the nurse that.

Anyway, it looks like my call paid off.. the dr ordered the blood tests that I wanted. I will have her blood drawn tomorrow.

Thanks for listening to me vent! I wonder how long these tests will take.

Mel

[mbhardy]

I agree you go with your gut instincts, you know your children better than anyone. I had the same experience with my daughter, Ashley. She was constantly above average in height and weight her first 12mos. As soon as I took her off formula and started giving her normal foods she went down hill. She couldn't gain weight and she stopped growing. Also, she was real thin in the arms and legs with an extended belly. After all these concerns my ped. kept reassuring me that there was nothing wrong. For 3 months I kept telling myself that if anything was wrong my ped. would know so she must be okay. Finally I couldn't take it anymore I brought her in determined that something had to be done. By the luck of the draw my ped was not in so I had to see a NP. I told her the same thing that I had been telling my ped for the last 3mos and she looked at me and said "have you ever heard of celiac disease". Of course I didn't, at that point she took a stool sample. There was alot of fat in her stool which indicated some sort of malabsorption issue. Her blood test showed positive for celiac and then she had biopsy which diagnosed her at 100% of having celiac. Now, my GI specialist said the blood tests can tell you if you have celiac and a biopsy will give you an exact diagnosis.

My daughter has been on a gluten free diet for 4 mos and is doing great. She has gained 10lbs and has grown 4inches.

So all I can say is go with your instincts.

[plantime]

Mel, I am so glad that your doctor responded! I don't know how long it takes to get the results back, but it is good that the blood is being drawn right away! From what I understand from others, just getting the doc to do the bloodwork is half of the battle. I hope the results are definitive, so you can know one way or another about your child.

[YankeeDB]

Mat4mel, regarding the blood tests, they usually come back quickly. For example, my blood was drawn Thursday and the results were available by Monday. Rather than wait for an appointment to learn the results, I went to the office and requested a copy from their computers--no problem! A clerk can handle this. You have a right to see these results.

If you do that and need help interpreting what they say before you can talk to the doctor, lots of knowledgable people here can help you.

Also wanted to say re: your 6 year old, that there are gluten-free versions of everything he likes: o-shaped cereals, GOOD tasting gluten-free breads for the pb&j sandwiches (I recommend the gluten-free pantry favorite sandwich bread mix), and wonderful pasta products made from non-gluten-free grains (Tinkyada, DeBoles, and many others). No shortage of ideas on what to eat are available here!

Finally, often people with celiac disease are lactose intolerant at least initially. You might find that you may need to eliminate dairy for a while. (If this is the case, you'll need to consider calcium supplementation.) That is, even gluten-free, some bowel symptoms may continue if lactose is a problem until the villi heal. Note: there are dairy-free cheese products for your son's mac 'n cheese favorite if need be.

Keep us posted!