6 Month Old Going For Testing, Need Advice

[mommyjust]

Hi! This is my first time on this board. We had a check up for my 6 month old son today and instead of gaining weight like he should, he lost a little in the past couple months. The ped. seems to think (and I agree) that it's linked to starting baby cereal and solids, so she made an app. with a specialist to look into Celiacs. At first I just thought, "Ok, no wheat. No worse than a kid with a peanut allergy or something like that." Then I came home and starting looking around online, and now I'm freaking out a little bit. I know it will be hard to change our home, especially since we live in a small town and have to drive an hour for the nearest health food store, but it's more than that. He's six months old and I'm already jumping to what I'm going to do when we eat out or when another mom brings snacks to little league. I know, it's a little crazy to be worrying that far in advance. But at least here I can worry out loud without making DH worry more, too.

So, what I would really like to know is, how long does the diagnoses process take? Especially if there's anyone who has gone through it with a baby this young. I read a few post that said it's hard to diagnose early, but I don't know how to handle wondering what's wrong for the next few months. Also, I'm breastfeeding. The ped. said my body would break down the gluten enough that it shouldn't be harmful to DS, but it still makes me a little nervous. I'm having such mommy guilt already because he's been so fussy the past few weeks, and I thought he was hungry so I kept giving him more cereal. His poor little tummy! Also, I have a 2 yr. old son who is growing normally and has fairly normal bowel patterns, but they aren't really formed like they should be. Should I have him tested as well?

I know all these questions will be answered at out appointment, but it's still three weeks away and I guess it'd just be really nice to talk to someone who knows more than I do. I've spent all day explaining something to family that I don't fully understand myself. So, thanks for any advice, and sorry for the sloppy post

[mommyjust]

My six month old son did extremely well for the first four months. He was a premie, so he was always small, but he was gaining weight well and we weren't worried. About 1 month ago, I started introducing cereal and at his appointment today he had lost some weight instead of gaining like he needed. He's also been extremely fussy and pulling up his legs often like his stomach his hurting him. The ped. scheduled an appointment for us with a pediatric gastro-interologist with the thought of celiacs, but it's not for a few more weeks. She told me to cut out all solids until then and exclusively breastfeed. I was a little stunned, as I had heard of the disease but no one in my family has been diagnosed or even tested. In the shock of it, I didn't really ask many questions beyond what I should do immediatley. Now, I'm reading that I may have to feed him gluten for more than a month in order to test? Is this true even with infants? I want to know what's going on, but I don't know if I can conciouslly make him sick and put him in pain. Has anyone else gone through testing with someone this young? Any advice on what to ask the doctor or even just your story would be so helpful. I really don't know where to start.

[kareng]

Sorry Folks, if this sounds a bit odd. I merged her 2 topics together so all the info about her kids is in one place. That should help her get the best answers.

[kareng]

I think others will know more about this than I do but 6 months seems awfully early to test for Celiac. If he has only eaten gluten a few time, I don't see how he could have enough antibodies built up or damage caused. When the Celiac Center in Chicago posted info for the free blood testing in October, they required a full gluten diet for 3 months. I don't think a 6 month old could even have a "full gluten diet".

You said he was a premie, maybe his digestive system is not developed enough yet to handle some harder to digest foods. What sort of gluten foods are you giving a 6 month old? I thought first cereals were usually rice or buckwheat? First baby foods were usually the orange ones like squash.

[tarnalberry]

Premise digestive systems are even more sensiteive than a full-term infant. And testing this young IS very unreliable. He IS getting gluten through your milk - plenty of studies have confirmed the passage of the portion of the gliadin molecule that causes reaction does make its way through the human mammary gland in most every lactating person. The only thing you can really do is try the testing, and after that's done, try going gluten free (you and him) for at least two months to see if you notice any changes. Take the stuff in the future one day at a time for right now.

[M0Mto3]

My LO started with issues just from the gluten that was passing through breastmilk. The info your ped gave you is not correct. Her weight gain issues started before the introduction of solids. Her initial reaction to rice cereal (due to cross contamination) was open sores on her bottom. We did not pinpoint gluten until she was 10 months old and had dropped from the 50th% in weight to the 5th%. She had all sorts of funky bms and had very little energy which was causing developmental delay. My husband also has type 1 diabetes which puts her at risk for celiac's.

So, when she went to GI the first thing we were told to do was to put her back on gluten and take her off of dairy and soy. Is your daughter getting dairy and soy? This is typically what would cause the symptoms that you are describing. It is much more likely to be dairy and soy protein intolerence than it is to be gluten. It would also be very hard to tell because unless you are not consuming dairy or soy products or if you are not gluten free then your daughter has been getting all of these foods all along through your breastmilk.

If I were in your shoes I would get rid of dairy and soy products at this point. This intolerence is not able to be tested for and it is very common in infants. You need to get rid of trace amounts as well (look at all processed foods).

That isn't to say that gluten isn't an issue. It just makes sense to try to cut out the most common offenders in babies first and then go to the less common ones (like gluten).

[mommyjust]

If I were in your shoes I would get rid of dairy and soy products at this point. This intolerence is not able to be tested for and it is very common in infants. You need to get rid of trace amounts as well (look at all processed foods).

That isn't to say that gluten isn't an issue. It just makes sense to try to cut out the most common offenders in babies first and then go to the less common ones (like gluten).

[Victoria5]

MJ- I know your fears, frustrations and confusion. Multiply it times 4 and that was my situation, all in one day! My response may be long, but I'm going to try to address all of your thoughts. My background is: Mom of 4 active celiac disease girls, one gluten intolerant/gene son; girls all dx'd in '04; read every medical article I possibly could for 2 years while working on Masters/Education, and now volunteer as a coach for new celiac disease parents.

1. Welcome to the board! What a great place to turn to for support (it kept me going in the early days). Check your area for nearby realtime support groups, too. Contact the leader and see if they can meet to talk in person with you or if they can give you some resources.

2. Weight loss is a symptom of celiac disease (and so is colic/gas pain that causes babies to pull legs up, but it could also be symptom of other things), and if your ped is referring you to a Ped GI, you are in good hands. The Ped GI will be very thorough and help identify the cause. The US does not usually test for celiac disease at all in children unless there is a visible concern, but it is standard practice to test every baby very early in other countries. Here it usually isn't earlier than 2, after food has been introduced for a time. (My youngest was 2, and her gliadin levels were insane! I wish our ped had tested earlier, what I know now would have terrified me then, and I'm thankful we got her in time.)

3. Your baby is a premie. Don't go by the standard "Your Baby Should Be Doing This" calendar/poster displayed on the back of the doc's door. Go back about a month (or two if he was really early) and that is where he should be. Most babies start eating at 6 months, but yours isn't "really" that old if you think about it a bit differently. Slow down. If he's still hungry, extra milk as opposed to solids will help him for a while.

4. "Freaking out" is normal. At least you knew how to spell the disease! I had no clue then, and there really was very little then as compared to now. But relax and breath. There are so many folks out there ready to jump in and help you out.

5. Changing your home/lifestyle isn't as difficult as it seems. It took me 7 years to get to some realizations about things, and I wish I'd known some things sooner that would have saved my sanity and my bank account! Your baby boy can live a pretty normal life, and you will all be healthier for it, too! (Don't dump everything you own on day 1 just because you read it on the net or in a book!)

6. You can get gluten free foods in the very grocery store in your town. We are a country that thinks a loaf of bread, a pan of pasta, a gobs of gravy are a must at every meal. Be creative with your meals. You have plenty of time to explore new food/cooking methods. My family rarely has bread and pasta meals any more (and my bank account is sooo much happier for it!). We always walk away from the table quite satisfied, too! Cooking is an adventure in our house! We've come up with some pretty tasty meals!

7. You are a good mom if you are jumping now, you are not crazy at all! Many restaurants now have gluten free menus, ask when you get there or call ahead to see. My kids pack baggies full of fresh fruits and, yes, veggies, and we take them along for snacks. Some schools are offering gluten free meals for celiac kids (ours is one). There are many kid fav snacks (fruit roll ups, chips, etc) that are gluten free that ALL kids like and don't even know it is gluten-free. Always prepare a back up for your kiddo, with extra for him to share.

8. It usually takes lab results about 2 weeks tops to get back to the doctor, depending on the lab. Usually a blood test is done prior to the visit so you save time and the doc has the results when you walk in. (We go through this annually.) You could request a gene test at this time, too, if your insurance company will cover it. If the test comes back inconclusive, you will know if further testing will need to be done if he does indeed have the gene. If no gene, no stress about celiac disease! I'd also ask if they could test for any other food allergies at the same time/same blood sample.

9. It is a mother's natural instinct to worry. Keep a diary. It helps sooo much with your sanity, and when your baby is older, you can share some memories with him.

10. I disagree with the gluten breaking down enough comment (to me its like saying "I watered down the tuna salad so your baby didn't get a lot of tuna."), but I'm not a doc. I'm not sharing this to freak you out more, only to give facts. Any amount of exposure to gluten in a celiac person causes damage. (This is the very reason for the debate over the Host in Catholic churches!) Even the smallest amount can cause enough damage that it could take up to 6 mos or more to recover (that is the average time the body needs to repair from all major injuries). Stopping gluten intake won't mean instant healing either, regardless of how long you've been on it.

11. I've spoken with many parents who felt the guilt (I did!). You didn't do anything wrong, keep telling yourself that. You didn't know what was making him cranky, and the care you provided was not intentionally meant to harm him. I'd do the exact same thing, as would every other mom. Baby cries = Feed Me!

12. Yes, your other child will need to be tested IF your infant's test comes back positive. You and your spouse will ALSO need to be tested if the results are positive.

13. Returning to strict milk diet is a good thing. If cereal is the culprit, going back to a liquid diet is far safer. Just means he'll be eating more.

14. I HIGHLY recommend a food diary. In it record the date, the time of each feeding, the amount he ingested, any symptoms that followed and the time of the symptom. IN ADDITION, along with what HE ingests, list everything YOU ingest, including the time, and amount. Mark items that you know have gluten in them. do this until you can identify a pattern, or you see the doc. Docs LOVE data, so bring it with you when you go in.

15. No one in my family had been diagnosed with the disease either, and it isn't on my husband's side. My children were the first. Both of my parents refuse(d) testing. Now a few distant cousins of mine have been tested positive so I can see the potential link. Many in the older generation refuse to be tested, saying they don't want to know. I think it was like 97% of celiacs don't even know they have it.

16. If your son does test positive, be aware that you, and your hubby, and even your 2 year old if you decide to have a completely gluten-free home, will experience the stages of grief. NO ONE EVER TOLD US THIS, and I watched each of my children crumble and I was helpless!!! You have already experienced a few, and it is normal: shock and denial/disbelief; pain and guilt. You may start to feel anger at the new lifestyle being thrust upon you. There may be a period of depression that everything you dreamt of is now in question; as well as Loneliness, feeling like you are in this alone (come back to this site when you feel this way, vent it here, there are so many who will help you through it!). Finally, you start to accept what is and learn neat little tricks to make life easier, and life is actually more fun. It won't be long before you are in control of everything again.

17. continue to feed him his NORMAL diet (that means you have to eat gluten as normal), as prescribed by your Ped. If he is being exposed to gluten through you, and it is in fact gluten that is irritating him, it will show up. After the test is done, you may tinker with his diet (and yours). Don't make any changes until after that initial blood test is performed or you could skew so many things. It is tough right now, so any time you have a fear, CALL YOUR DOC! They have to keep a running record of your calls (you should document them, as well).

I hope I responded to your concerns, without making you more afraid, and offered some ideas to help you out. Three weeks will pass by quickly. You are a good mother, and you have not done anything wrong. Follow the Ped's instructions, and watch your child closely, and don't hesitate to call your doc for answers. Your ped should be willing to help you out...she got you here!

I wish I could take the celiac disease away from my kids, and deal with it all for them, but my kids are tougher than I give them credit. My middle child was 9 years old before she finally got a diagnosis of what had been making her ill since she'd started solids as an infant! (9 to 11 years is typical time for accurate celiac disease dx!) It was because I pushed to find out what was going on with her that she 'saved' her little sister, then only 2. My youngest daughter's gliadin levels were sky high; she was seriously ill and I didn't know it. Like her older sisters, she had dark circles below her eyes which I blamed on the dark skin tones of their daddy. Now there is no hint of celiac disease in their faces and they are only checked every other year.

Take care of YOU as well as your little guy! Best wishes.

[mommyjust]

Wow! Thanks you so much! That really did answer so many of my questions. I really like the idea of the food diary. At least doing that I can feel like I'm helping in some way. Not to be overly dramatic but that post was an answer to prayers

[Victoria5]

Wow! Thanks you so much! That really did answer so many of my questions. I really like the idea of the food diary. At least doing that I can feel like I'm helping in some way. Not to be overly dramatic but that post was an answer to prayers

You are quite welcome. I'm glad I could help! Please post back here how the results come out. I know you are overwhelmed, but believe me, it does get easier. Keep in mind, don't rush into anything. Your little one needs 'a gift of time'. Just because he was in a rush to get here, doesn't mean you have to rush him through life. And with every child, it is hard to know what to do when you don't speak Baby. I'll keep you in my prayers.

(My husband is telling me to make sure I tell you to request a 'Full Panel' so the doctor gets an accurate picture. He is also reminding me that even if your little one isn't full celiac, he may be highly sensitive/gluten intolerant which still requires a gluten-free diet.) And I'm telling him, one step at a time.

Take care of YOU!

[GFdad0110]

wow vitoria5 that was quite a response. You obviously did your homework and i'm not sure i can add to that. I have been on a gluten free diet my whole life now (31 years) and i think you may know more then me about it. i am a father of 2 and my youngest (21 months) is on a gluten free/lactose free diet. We noticed the lactose intolerance very early when we used a cows milk based formula and he had nasty bm all the time (up to 10-12 a day). We switched him to a soy based formula and he improved immediately. We noticed his gluten intolerance when he started eating solid foods. Since i was gluten intolerant I was all ways on the look out for it. It was a case of trial and error to find out his gluten sensitivity. I think my biggest challenge will be teaching him what he can and cannot eat as he grows up, but my mom did it with me and many parents are in the same boat we are all in right now. As a kid I would sometimes eat things i couldn't in school or out with friends and as all kids i had to learn on my own how important it was to follow a strict diet. As an adult i started reading about it more and about the side effects especially long term that really made me keep a strict diet. I read every label and because of that it has made my diet very healthy because you will begin to notice all the junk they put in our foods. I don't like to eat foods that have ingredients that i can't pronounce. I believe gluten free diets are actually very healthy. Luckily I like to cook and i have a mother who is a great cook to go to for advice. There are plenty of gluten free options out there. I like to buy premade mixes for waffles, brownies, muffins ect. and transform them into more complex nutritious things. For one example I shred a sweet potato into my muffin mix. their delicious and my son loves them. so try not to get to overwhelmed. There is plenty of products and people out there to help. The way I see it if a gluten intolerance is the worst we have to deal with as parents we are lucky.