Diagnosing Infant?

[AMDG]

*First-time poster*

My one year old has been having digestive problems from 8 weeks old until present. While exclusively breastfed, he would writhe in gas pain and be strain to have a BM. While "impossible" to be constipated breastfed, he was constipated.

By 6 months he was listed as "failure to thrive" and was sent to a pediatric allergist for possible food allergies. He tested negative for food allergies, however, the allergist did notice that he had an "underdeveloped lower jaw," which is consistent with malabsorption and digestive problems. My son then went through a blood workup and a barium enema. This included a basic panel for celiac, although his exposure to gluten would have been minimal (cheerios and oatmeal). All of these tests came back negative.

Eating more whole foods, the malabsorption is becoming more noticeable; undigested food particles in his stool, and very offensive smelling. But, a sign of celiac?

Now I am told that celiac may not be completely ruled out, even though the initial test was negative. However, I'm confused as to how an 8 week old exclusively breastfed baby could show signs of celiac, as my understanding was one HAD to ingest the food to form antibodies. Any insight?

[tarnalberry]

Now I am told that celiac may not be completely ruled out, even though the initial test was negative. However, I'm confused as to how an 8 week old exclusively breastfed baby could show signs of celiac, as my understanding was one HAD to ingest the food to form antibodies. Any insight?

He would get it from you. Gliadin, the main wheat protein, is passed through breastmilk, and a celiac baby can react to the gluten in his/her mom's breastmilk. (The solution to this is to have the mom go gluten free.)

Testing is notoriously unreliable in kids under 2.

Enteropathies (damage to the intestines) can be caused my gluten (which is what celiac is) but also by other things - dairy, and some infections. (These are both rare, but they do occur.)

Do you know what blood tests they ran, and what the results were?

[sandsurfgirl]

Are you still breastfeeding? If you are, do an elimination diet and see if he gets better. I'm shocked they didn't have you do this when he was tiny still. I started my elimination diet when my son, who is now 5, was only 3 weeks old. I had to quit a whole bunch of foods the first year- wheat, soy, dairy, nuts, and corn. I nursed until he was 2 1/2 but after he was one, I was able to add some of the foods back in slowly.

If you are not nursing, he should be on a hypoallergenic formula like Nutramagen.

I hope they had you go very slowly with adding new foods to his diet. My son was still on very simple foods at the age of 1. We started him on solids at months but waited until he was after one year old for ALL grains other than rice. Proteins didn't come in until he was around 9 or 10 months old. And yes, he did NOT have any birthday cake at his first birthday. It wasn't worth getting him sick when he didn't know the difference anyway.

At this age, they are still practicing with solid food, so it's fine if the majority of the diet is breastmilk or formula.

If you want more info, feel free to email me at chickenscratchslings@gmail.com in case I don't get back to see this post.

[sandsurfgirl]

Wanted to add that blood testing for allergies is pretty inaccurate especially for foods. Food allergies are tough to test for in babies and elimination diet is the ONLY sure way to do it. I'm sorry that your doctors haven't been able to advise you better all this time.

[AMDG]

To answer some questions, from what I can recall, the tests they ran were a BMP w/ basic celiac panel. They also tested for cystic fibrosis, thyroid disease and hirsprungs. All came back negative.

Yes, I am still breastfeeding. When baby was six months old I did do an elimination diet specific to diary. I *THOUGHT* I had found the answer, because for awhile I was convinced it made a difference, but I think it was me more wanting an answer. I then began giving him diary free acidopholus twice a day in order to aid his digestion. Again, it worked, or so I thought for a time, and then back to normal. Now that he can hold a sippy cup I have him drink diluted prune juice--everyday. This is the only way I can get him to go. Other than the diary I have been given no more direction on elimination of foods.

While not a physician myself, I was confused about the allergy testing as well, since Baby actually hadn't been exposed to the foods he was being tested for and was nursing nearly exclusively. I was given no restrictions on his food introduction, and presently he eats everything; diary, meats, eggs, fruits, wheat.

It seems that Baby has *some* type of malabsorption syndrome/problem. There are cases of celiac in the family, albeit distant. I'm not convinced Baby has celiac, because many of his symptoms don't seem to pop up as common ones, which is why I'm taking it to the message boards to see if anyone has more insight. Doctors have been very helpful, I feel, and are doing what they can given the symptoms Baby presents. We may just need to wait until Baby is older...

[Kris D.]

I'm posting for the first time. I'm not as seasoned as many of the members here, but I can tell you my experience: I am gluten intolerant, and I've been breastfeeding my infant son. He is now five months old, and for a couple of months around the holidays, I was cheating and eating lots of glutenous foods. My son was spitting up terribly - projectile! - and also became very constipated. He would sometimes not have a bowel movement for 6 days. I have to supplement with formula, so I thought that was the culprit, but lately I began wondering if it was my eating gluten that was causing the problems. So I stopped a couple of weeks ago, and even my skeptical mother and husband had to admit that my son is doing MUCH better. Hardly any spitting up, AND he is having bowel movements every 2-4 days instead of 4-6 days. He is happier and more comfortable. I have emailed his pediatrician to see what we need to do to make sure that we introduce foods properly. For me, elimination has been the only way to diagnose the problem in me, and now in my son. Good luck!

[sandsurfgirl]

To answer some questions, from what I can recall, the tests they ran were a BMP w/ basic celiac panel. They also tested for cystic fibrosis, thyroid disease and hirsprungs. All came back negative.

Yes, I am still breastfeeding. When baby was six months old I did do an elimination diet specific to diary. I *THOUGHT* I had found the answer, because for awhile I was convinced it made a difference, but I think it was me more wanting an answer. I then began giving him diary free acidopholus twice a day in order to aid his digestion. Again, it worked, or so I thought for a time, and then back to normal. Now that he can hold a sippy cup I have him drink diluted prune juice--everyday. This is the only way I can get him to go. Other than the diary I have been given no more direction on elimination of foods.

While not a physician myself, I was confused about the allergy testing as well, since Baby actually hadn't been exposed to the foods he was being tested for and was nursing nearly exclusively. I was given no restrictions on his food introduction, and presently he eats everything; diary, meats, eggs, fruits, wheat.

It seems that Baby has *some* type of malabsorption syndrome/problem. There are cases of celiac in the family, albeit distant. I'm not convinced Baby has celiac, because many of his symptoms don't seem to pop up as common ones, which is why I'm taking it to the message boards to see if anyone has more insight. Doctors have been very helpful, I feel, and are doing what they can given the symptoms Baby presents. We may just need to wait until Baby is older...

I would not wait until he is older because your baby is sick and has been sick pretty much his whole life. Wellness is your number one goal here so he can have a good start now, instead of fixing damage later. There is damage being done if he is having undigested food and all the symptoms you are telling us about.

What you should have done is go very slowly with all foods, especially allergens. Wheat should be the last grain given and grains need to be slow slow slow slow. Rice is the least allergenic so it should be first and the only grain for quite awhile. With a sick, or allergic baby this is CRUCIAL.

I would back off and simplify his diet first and see if you notice improvement. Get ALL gluten out of his diet meaning all wheat, barley and rye. No complicated foods. At one year old, simple is best anyways. Give him fruits, veggies, meats and rice only. No dairy, citrus, eggs, other grains, berries, nuts, legumes (peas) or fish.

If he improves in a couple of weeks, then you an introduce ONE new food every 4 days.

If he doesn't improve, then eliminate the major allergens from your diet. Try to keep breastfeeding another year or year and a half if you can. There are studies that show that breastmilk changes as the baby ages to accomodate the needs of an older child. It gets richer, more dense in essential fats and more nutritious to meet the needs of a toddler. Allergic babies who are breastfed until they are 2 or past have a much higher chance of outgrowing their food allergies. My ped was an expert in this stuff thank God and she was adamant that I not stop nursing unless I absolutely had to. My son was such a sick baby and he is so healthy now at 5. I'm so glad I kept nursing!

When you reintroduce eggs, do yolks first and then whites. Whites are far more allergenic. Don't feel like you have to rush with new foods. He is a baby and doesn't know the difference anyway.

Believe me it's a pain but you will thank yourself if you do this. Having a baby that is free of illness and stomache problems is SO worth it.

He could also have microscopic blood in the stool. Did they test for that? Sure sign of allergy.

[AMDG]

Thank you all very much for the information you're giving me. I guess the only thing that I hesitate on is "Does baby even have Celiac?"

Do these symptoms SOUND like Celiac, because if they do, then I would openly at least *attempt* a gluten free diet for myself and Baby to at least see if there is an improvement. Here's a quick recap:

-Constipation since birth, painful gas by 8 weeks

-Six months diagnosed as "Failure to Thrive"

-Negative allergy testing (not that I'm convinced that means much at his age...)

-Micrognalia (underdeveloped jaw)

-Negative for intestinal blockages/twisted large bowel

-Negative "simple" Celiac panel

-Very foul, sometimes dry, sometimes undigested, sometimes very odd 'sticky' stool

Basically, he's a constipated, gassy, very small baby who is otherwise meeting his cognitive milestones. He's has an appointment next month and will have his FIRST stool sample there, but I may try to bump this up.

Thank you, sandsurfgirl for your detailed food introduction. I appreciate you taking the time to do that. Thank you all for your insight and information.

[sandsurfgirl]

It could be celiac although at this age your baby probably won't have antibodies built up to come up positive on a test. It could be intolerance or allergy. You just can't know until you simplify his diet and challenge foods later after he improves. It's the only sure way to find out what's causing this. His symptoms are pretty classic for "food allergies" in a baby and I put it on quotes because generally at this age it's all lumped into the allergy category.

I strongly urge you not to only go gluten free, but eliminate all those other allergens and add them slowly. Your doctor should have had you on a totally different path and your baby wouldn't have suffered for a year, but you can go back and retrace those steps and get ahold of this now.

You might not have to eliminate all of that from your diet. You will have to decide if you want to do his diet, your diet or both at the same time.

I am not a doctor but I lived this with my kids and now myself. I can tell you with great certainty that it is most likely diet causing this to your child.

[sandsurfgirl]

Don't let the fact that it happened when he was exclusively breastfed trip you up. The proteins in dairy and gluten are large and do go into breastmilk like another poster said. My son had blood in his stool when he was exclusively breastfed at 3 weeks old because he was reacting to what I was eating.

[Befitzge]

I can completely relate to your situation. My daughter truly began her Celiac symptoms at 12 months, and it took another three months and alot of fighting with specialists to get the diagnosis. As already mentioned, the tests are not 100% perfect, and you may have to watch trends in his (?) eating to really understand what is causing the failure to thrive.

Has your doctor recommended a biopsy of the intestinal track yet? If so, I would recommend you do the biopsy prior to changing your diet. If you remove gluten from his (or indirectly through your) diet and he begins to improve, than the biopsy could also be inconclusive. In my daughter's situation, they actually recommended that we reintroduce gluten into her diet for three or four weeks (basically make her sick again) so that the results of the biopsy are accurate.

Also, newly diagnosed Celiacs have trouble digesting lactose as well (mainly because it is so hard on their systems). You may want to consider also removing dairy from your/his diet until he is better. At that time, you can slowly reintroduce dairy back into the system.

Hope this helps!! And best of luck!

[AMDG]

I can completely relate to your situation. My daughter truly began her Celiac symptoms at 12 months, and it took another three months and alot of fighting with specialists to get the diagnosis. As already mentioned, the tests are not 100% perfect, and you may have to watch trends in his (?) eating to really understand what is causing the failure to thrive.

Has your doctor recommended a biopsy of the intestinal track yet? If so, I would recommend you do the biopsy prior to changing your diet. If you remove gluten from his (or indirectly through your) diet and he begins to improve, than the biopsy could also be inconclusive. In my daughter's situation, they actually recommended that we reintroduce gluten into her diet for three or four weeks (basically make her sick again) so that the results of the biopsy are accurate.

Also, newly diagnosed Celiacs have trouble digesting lactose as well (mainly because it is so hard on their systems). You may want to consider also removing dairy from your/his diet until he is better. At that time, you can slowly reintroduce dairy back into the system.

Hope this helps!! And best of luck!

Were your daughter's symptoms similar to that of my son's? As I am searching for answers, I know that we are dealing with a kind of intolerance/allergy/malabsoption problem, but his symptoms don't completely match with celiac.

[AMDG]

Thank you for bearing with me on this topic! I have SO many questions!

One more thing...

Do any of you have a link w/ celiac and other autoimmune disorders? I have a hx of an autoimmune disorder, as does an older DS. Doctors haven't made any connection with Baby's problems and our family hx, so I'm just wondering if there is a strong connection. (We do not have thryoid disease or a hx of it.)

[Darn210]

Were your daughter's symptoms similar to that of my son's? As I am searching for answers, I know that we are dealing with a kind of intolerance/allergy/malabsoption problem, but his symptoms don't completely match with celiac.

I've been on this board for a couple of years . . . and if I've learned anything, I've learned that the symptoms of celiac vary far and wide. Not saying that it is celiac, but failure to thrive is a big indicator and constipation, contrary to popular belief (of the uninformed), is also a big symptom.

It certainly doesn't hurt to try the diet although if you want to pursue any additional testing in the Celiac realm, it should be done prior to going gluten free. If you do try the diet, I would expect that you would see the results fairly quickly. The little guys seem to really bounce back quick and (in my personal opinion just from reading so many posts) the GI symptoms seem to resolve more quickly than say the neuro symptoms. If he's had so many issues and just the fact that he's so young, his height/weight is probably well-documented. If you decide to do a trial diet, keep a log of his diet, his symptoms, when his symptoms resolve(hopefully), and his growth (and change in growth curve). This type of documentation may lead to a diagnosis in itself even with negative celiac panels.

Good Luck in your quest for answers for your son.