Could This Be Celiac In My Almost 11 Month Old?

[Concerned-mm]

My daughter will be 11 months old next week. She has been diagnosed with GERD and milk protein intolerance. She is also allergic to oats (exposure results in hives) and has eczema. She has been on Similac Alimentum since 4.5 months. Because of the milk protein allergy, we have gone slow with the introduction of solids. About two months ago we introduced bread and she would have it occasionally. When she started eating bread more regularly, I noticed that she became more and more irritable and fussy. I talked to her pediatrician who said there was no way it was the bread and she must be teething or constipated or something else. I followed my instincts and cut bread (the only gluten containing thing she ate) from her diet. She improved over the next few days and became a happy baby again. I assumed since the doctor said it was unlikely to be the bread and the bread was store bought that there could be some cross contamination with milk even though I read the label very carefully. Several weeks later, we tried again this time with homemade pancakes to insure that milk was not the culprit. Everything seemed fine at first except for some extra gas. On the third night, she woke up screaming in the middle of the night and would not stop crying and pulling her knees to her stomach for two hours. The next morning I called the doctor again who reaffirmed that she did not think it could be related to the pancakes and suggested I keep a food log and wait a few weeks and try again. So, I waited and we tried pasta and noticed increased gas but nothing severe and after several days we tried bread (homemade so milk was not an issue). She went from a little extra gas to extremely fussy and irritable until she was crying everytime she passed gas and could hardly be set down. I cut the bread and pasta out again and she has been much better. It seems as it takes her eating a wheat containing food for several days with no symptoms at first and then steadily going downhill. This is why the doctor does not believe it is wheat products. She says any intolerance would show up more quickly.

I was hoping that some of you who have been through this with young children could help me out. First, does this sound like it could be celiac or another type of wheat intolerance or am I completely off base? The doctor keeps treating me like I am nuts, but three times in a row is more than a coincidence. Second, I would like to take her to an allergist or a dietician (we see a GI doctor and they said they couldn't help), but all of the pediatric allergists in our area require a referral from the pediatrician which we can't get. Which would you recommend seeing? Also, do you have any advice on how to find a pediatrician who would be more sympathetic and give a referral?

I know you are not supposed to cut out gluten until you have them tested, but I have read testing at this age can be unreliable and I just can't let her suffer anymore.

I am sorry this is so long, but I was trying to be complete. Thank you for reading it and any advice you can give will be greatly appreciated.

[Mum in Norway]

I feel so for you and your little girl.This reminds me of when my daughter was the same age. She would have dihorrea all the time, stopped eating, stopped growing, was fussy and irritabel night and day. After having seen three doctors who said it was all normal for babies to be fussy and crying (it was not for my baby, she had been happy, calm, sleeping well, eating and growing well), i bullied the fourth doc in to taking tests and sending a refferal for biopsi. The bloodtests came back negative for celiac, but like you say, when they are so young that's not very reliable. I took her off gluten the instant the bloodtest was done, caus at that poit she was so ill, loosing weight, stopped talking and developing, crying non stop, so there was no way she could wait for the biopsi. Off gluten she was back to being her self, happy and well adjusted. In the years to follow I took her to several specialists and she was tested all ways known to man (apart from biopsi, as she was glutenfree). She was on several gluten challanges, but I took her off gluten again as soon as she got ill, that usualy took three days. Then almost a year ago, after we mooved to a new place, got a new doc that agreed with me sha had been tested enough, we desided to do one last challange, and if she got ill again we would just keep her gluten free till atleast when she was 6-7 years old.

But this time she did not get ill!

So doc said she had grown out of what ever it was, and as long as she diden't get ill, we could just give her gluten like any other kid. That worked fine for about 7-8 months, but lately she has been complaining about stomace pain, had dihorrea more and more often, very moody and angry, had trouble sleeping and become more and more nervous and afraid, of things like sounds, nois, cars, plains, unfamiliar situations, beeing alone in her own room and so on. So once again of to the doc for celiac testing, still negative, but now she is off gluten again and seems to be getting better, specially her mood, and she is able to play by her self again, to go outside alone, talk to people and she just seems much more happy

 

I hope you can find someone who will do the testing, but if you don't then do not wait too long before you make her glutenfree. This is your childs health, and thats more important than anything. When you cul gluten from her diet, keep a food journal where you also write down things like mood, sleep, any pain she has, her stool and so on. That way you can show this to doctors later if they wanna know what changed when you cut gluten, and also it will help to find it if there is anything else she is reacting to.

 

Hope this was helpfull, and sorry for even worse spelling than normal, I'm in a hurry and english beeing me second language, I Could have done with some more time...

 

Good luck to you both!

[greenbeanie]

This sounds very much like my daughter before her celiac diagnosis. She had obvious digestive problems since she was two days old and my breastmilk came in, and the problems only got worse and worse. For the first three months our doctor kept insisting it was just colic, even though she had projectile vomiting and was clearly in pain. Her sleep was awful and she twitched around so much that they thought at one point that she might be having seizures (which, thankfully, she wasn't). At five months I finally insisted that if our primary care doctor didn't give us referrals to specialists, we were going to find another doctor. We got referrals to a pediatric GI, allergist, and neurologist. The allergist was the most helpful at that point. She wasn't tested for celiac at that point because she'd only ever had breastmilk, so no one even considered celiac a live possibility. Anyhow, we tried Alimentum and she couldn't tolerate that either, so she finally ended up on Neocate. She immediately began thriving, only to go downhill again once she started solids. All her food allergy tests were repeatedly negative, but like you we introduced solids very slowly. As problems redeveloped, we couldn't figure out what was behavioral, what was car sickness, and was a food problem, etc. We'd been discharged from the GI once she'd started doing so well on Neocate, which was unfortunate. Our PCP once again kept insisting that her crazy tantrums and sensory problems were just normal toddler stuff. I knew it wasn't normal, but I was so exhausted by fighting with doctors at that point that I let myself be convinced to wait it out for a while.

Anyhow, three years later she'd been diagnosed with sensory integration disorder and was having what the doctor said were "abdominal migraines" every day. She often had 10-15 tantrums per day and was just miserable a lot of the time in general. I finally figured out on my own that the must have celiac, and we had to switch primary care doctors twice before we found one who would listen and agree to even order the blood tests. The previous doctor had actually suggested that my daughter's stomach pain was caused by MY unfounded anxiety about her health! I was so frustrated that I was ready to tear my hair out. I finally stopped caring whether the doctors thought I was crazy, stopped trying to convince the dense ones that there was a real problem, and just resigned myself to switching doctors over and over again until we found a good one. Fortunately, the third doctor was really great. I printed out the "Is your child the one?" brochure from the website below and brought it to him, with all her symptoms and the recommended blood tests highlighted. He took one look at it and gladly ordered the tests.

Open Original Shared Link

As soon as her blood tests came back with strong positives, we were able to get an urgent appointment with the GI (with a much shorter wait than normal) and they did the biopsy less than a week later. So things did move quickly once we got our foot in the door with a good PCP. She has been absolutely thriving since she was diagnosed and went gluten-free. It was really an amazing turn-around. Her sensory and earlier neurological problems are improving very quickly, and it's only been a few months.

Any doctor can order the celiac blood tests (it doesn't have to be a specialist), so you may need to keep switching PCPs until you find one who will either give you a referral or order the tests. If any of the tests come back positive, it should hopefully be easy to get everyone to take it seriously and act quickly after that. The first step seems to be the hardest in this case. Importantly, your daughter will need to keep eating gluten until all testing is done. If blood tests are positive and the GI wants to do a biopsy to confirm, she'd need to keep eating gluten until the biopsy too (our well-meaning PCP gave us bad advice and said to go gluten-free immediately after the blood tests, but luckily I knew that was wrong and spoke to the GI's nurse before doing that). If the celiac tests are negative, she could just be too young for the tests to show the damage, or she could have an intolerance (of gluten or something else), and it can be really hard to figure that out with such young children. Of all the specialists we saw, the allergist was the most helpful for us; even though my daughter always tested negative for food allergies, at least the allergist recognized that food can cause serious problems and always listened to our concerns.

Good luck! I hope you're able to get to the bottom of the problem soon so your little one can start feeling better.

[Concerned-mm]

Thank you so much for both of your replies. I was afraid that we would just have to keep switching doctors until we find one that takes me seriously and that seems like what both of you went through as well. My daughter was only breastfed for a month (2 weeks exclusive followed by 2 weeks supplementing) because she was not gaining weight and I had supply issues, so she would not have been exposed to gluten again until she was 8 or 9 months old. I don't know that we would ever get a positive test because I just don't think I can keep her on gluten for that long. Each time we have tried bread we have stopped within a week. She is so happy normally, so it is hard to see her miserable. If she had been on gluten longer I think it would be easier to justify just a little more time until the tests. Since I couldn't even get tests scheduled, I already took her off gluten this time so she wouldn't have to hurt while I got the doctor issue figured out.

 

How long would she have to consume gluten and how regularly for a good chance at getting an accurate test result? I am sure it is dependent on each individual and their age, but do you know if it is on the order of weeks or months? 

 

I would be excited to find an allergist like you mentioned who was helpful and would just consider her symptoms and then point us in the right direction. I am not hopeful to get positive test results with her being so young. I know they can't diagnose a particular intolerance based on symptoms without test results, but they could at least guide us. I am hoping that she still has a chance to outgrow some of her intolerances since she is still so young, but in the meantime I think we are just going to have to keep searching until we find a doctor who is willing to help.

 

Thanks again!

[greenbeanie]

 

How long would she have to consume gluten and how regularly for a good chance at getting an accurate test result? I am sure it is dependent on each individual and their age, but do you know if it is on the order of weeks or months? 

 

As far as I can tell, there isn't much consensus on this. Very young children seem to be especially susceptible to false negatives even when eating gluten regularly. I'm not a doctor, but I'd think it would take months rather than weeks on gluten for a toddler to have a reasonable chance of getting accurate results, unfortunately. I've heard that the DGP tests are more sensitive in young children, although my daughter's tTG-IgA was actually slightly higher than either of her DGP results (though all were positive).

 

As an adult, I'd been gluten-light for many years (usually only eating 2-3 servings of wheat per week plus trace amounts in condiments, etc.), and I did a 6-week gluten challenge with about 2 slices of bread per day. That was the standard recommendation at my GI's office. My celiac tests were negative, which totally surprised both me and my doctor. We are still not entirely sure whether I was eating enough gluten for long enough to make the tests accurate.