Trying To Determine What's Wrong

[seekinganswers]

Hi,

I found this site tonight and already found some helpful info. I am hoping someone can help me figure out what our next steps should be. Sorry this is so long; I didn't want to leave anything out.

I think my baby girl has a problem with wheat. She got super constipated when we introduced wheat cereal (I attributed it to the increase in solid food) then better when we ran out and I just used the rice and oatmeal we had plenty of (I attributed it to her body getting used to eating solids). But then when we started the wheat again the severe constipation returned, so that's when I first suspected wheat. But I was/still am breastfeeding and I had been eating wheat the whole time, so it didn't seem like a certain or strong issue. But I stopped the wheat cereal again and the constipation cleared up again.

She also once got a hold of a couple goldfish crackers at a play date (before I suspected wheat of anything) and got hives that afternoon. At the time the doctor made me realize it could have been the dogs, however we have since been around more dogs and even returned to that house with no issue. No other time has she ever had hives; also they didn't bother her at all. It is possible she got a hold of something else I didn't see or perhaps reacted to dye (they were the bright colored ones) or something else.

At her 1-year appt I mentioned all this to the doctor. This, combined with her not gaining weight basically during the time she was on wheat led her to suspect Celiac, as I did. She had her blood tested for Celiac - sorry, don't know which test(s) - and allergies (top 8, I believe). They came back negative, but the doctor mentioned that false negatives are common in young children. She advised me to reduce/limit both of wheat intake but that it didn't seem necessary to go completely gluten-free.

Also, not sure if it's relevant here, but when we introduced cow's milk shortly after she turned 1 she got bad diarrhea, so we stopped that. She currently gets almond milk in addition to nursing. She also gets some plain whole yogurt which she seems to tolerate fine. Also, with the bloodwork she had a low IgB, I think, for which she is being referred to an immunologist.

Anyway, her constipation has returned (almost 15 months old now). So I'm thinking - If she has Celiac, I'm not doing enough and she's starting to react to gluten coming through the breastmilk and from cross-contamination in oats, etc. Or, on the other hand, if she doesn't have Celiac, we're wasting energy avoiding wheat, etc to the extent we are and not looking for the real problem.

Thank you if you've read this far! So my main question is - is getting an endo a definitive test? Should I be looking for a gastroenterologist? Also, should we all (myself, husband, 2 older kids) just get one done too? Does it sound like it's probably Celiac? Are the hives, milk issue, and/or IgB levels possibly related to Celiac? Anything else I should be having tested/looking into?

Thanks in advance!

[mushroom]

Hi, and welcome!

Gluten is actually an all or nothing proposition. Just a little bit can hurt a lot. The idea of reducing wheat intake makes no sense to me at all. For a sensitive celiac, all it takes is one crumb of bread to cause a reaction. Some people react from breathing flour in the air of a bakery. So no, reducing gluten intake will not keep your baby safe.

As you are still breastfeeding, you should be totally gluten free as well if you want to find out if gluten is her problem, as you will be passing gluten to her in your breast milk. Also, most oats are wheat contaminated, and some celiacs do not tolerate the certified gluten free oats - I don't touch oats myself, not worth the risk. So yes, there is a lot more you can do to try to pinpoint if gluten is the problem.

Celiac testing is notoriously inaccurate in children under five, both blood and biopsy, so no, the endo is not definitive. Even in adults it is at least 20% falsely negative. Also, if she has been mostly gluten free there may not be enough damage in the small intestine to show up on biopsy.

The lactose intolerance from the cow's milk, however, would seem to suggest that she may have some villous atrophy, although the diarrhea could be also an intolerance to casein IF she apparently tolerates the breast milk just fine, although the fact that she tolerates yogurt where the lactose has been consumed by the enzymes leads back to celiac in a roundabout way and is perhaps an indication of reaction to gluten in the breast milk. Gluten intolerance can increase over time.

My best guess would be that she is probably gluten intolerant/sensitive - whether or not she is celiac cannot be predicted at this point. As I said above, I think you two should both be totally gluten and oat free to see how she does. Whether celiac or gluten intolerant, the treatment is the same - a gluten free diet.

[seekinganswers]

Thanks. That's kind of what I thought. I was hoping before putting all the effort into going 100% gluten-free to get a certain diagnosis, though, so that is disappointing that it's not definitive. Is it still worth pursuing or not - what's the false negative rate in young kids? The pediatrician didn't mention it at all; I just found out about it from online searching. If we go gluten-free, then what? The ped. said if it's just intolerance and she's not exposed much she could outgrow it. Do we try gluten again every few years? I'm just thinking if we never get a diagnosis and never reintroduce, we could be killing ourselves to avoid it unnecessarily, and when she goes to school in a few years having them vigilantly accommodate an unconfirmed condition seems iffy at best. Sorry; this seems so overwhelming with the extreme nature of it. Also, is there like a basic "How to Live/Get Started With Being 100% Gluten-Free" page or site? I have a lot of questions on what I'm sure are the basics regarding food, common associated issues, dishes, etc. Thanks again!

[mushroom]

Thanks. That's kind of what I thought. I was hoping before putting all the effort into going 100% gluten-free to get a certain diagnosis, though, so that is disappointing that it's not definitive. Is it still worth pursuing or not - what's the false negative rate in young kids? The pediatrician didn't mention it at all; I just found out about it from online searching. If we go gluten-free, then what? The ped. said if it's just intolerance and she's not exposed much she could outgrow it. Do we try gluten again every few years? I'm just thinking if we never get a diagnosis and never reintroduce, we could be killing ourselves to avoid it unnecessarily, and when she goes to school in a few years having them vigilantly accommodate an unconfirmed condition seems iffy at best. Sorry; this seems so overwhelming with the extreme nature of it. Also, is there like a basic "How to Live/Get Started With Being 100% Gluten-Free" page or site? I have a lot of questions on what I'm sure are the basics regarding food, common associated issues, dishes, etc. Thanks again!

Your last chance at this point of getting any concrete diagnosis is the endo with biopsy. To have a chance of this being positive she would have to be reacting to your breast milk and whether that would be causing sufficient damage to show up on biopsy is debatable. And again, the false negatives are even higher for infants than adults. Otherwise, discuss with her doctor and take her totally gluten free and see if she improves. Some doctors will make the diagnosis based on positive response to the diet; see if her doctor is one of those.

The concern about her schooling is a valid one. This could be handled by having her do a gluten challenge before she starts school, where you feed her a gluten-packed diet and see how she reacts. Some children do have a "holiday" where they do not immediately react to gluten when it is reintroduced; on the other hand, others react violently and do not make it through to the end of the gluten challenge. At this stage a good pediatrician would diagnose the child as needing to be gluten free, if not fullblown celiac.

The difference between the two diagnoses (gluten intolerant vs. celiac) is in a state of flux at the moment since most doctors are only just coming to the realization that there is such a thing as non-celiac gluten intolerance. Maybe by the time your daughter starts school things will be clearer.

I do feel for your dilemma. It is so hard to have little ones unwell and not be able to figure out what to do for them, and celiac is a very frustrating disease.

For basic informational reading start here at celiac.com. Then read through the threads on the forums. You will find various books recommended - Gluten Free for Dummies, Dr. Peter Green's book, Dr. Staphen Wangen's book - alll have their devotees. There are numerous threads on the forum about deglutening your kitchen and pantry that will make for hours of reading.

I do hope that you get a diagnosis and/or get your daughter well.

[seekinganswers]

Thanks again. I will look around the main site more and get a couple books. It is definitely frustrating, and intimidating looking at what 100% gluten free means. I think KNOWING would make it a little easier to take. Oh, well. Thank you very much for your help.