New Here, My Baby Might Be Allergic To Gluten? Will She Outgrow It?

[3groovygirls]

Hi! My name is Linda and I have 3 DD's, 5, 3 and 9 months. My 9 month old has gradually been losing weight. Her growth chart has recently flattened out and she's now in the 5th percentile and they are getting worried. I casually mentioned to the Dr. when they started asking about her food intake that she can't eat a lot of foods b/c they give her REALLY bad diarrhea. No Cheerios, no oatmeal, no rice cereal, they all give her diarrhea so I've been sticking to fruits and veggies. She also likes those Gerber Poofs but those give her a face rash. I thought maybe the diarrhea was an intolerance to stuff like that b/c she was little but the Dr. said she COULD have a gluten allergy or Celiacs.

Oh and I don't know if this is a connection but I stopped nursing her at 3 months old. Whenever I would eat anything like whole wheat bread or brown rice she would SCREAM like she was being murdered. Seriously, it was awful. I thought she was sensitive to whole wheat. Anyway, we switched to formula and she's been fine.

So could she outgrow this? Or can a 9 month old really be allergic to gluten and have Celiacs already? They said they are going to give her some time and if she's still sensitive run the blood tests later.

Ok, now onto the wierd thing. My 3 year old was around the same age ALSO diagnosed with FTT, she saw a GI Dr. who really thought she had Celiacs she "looked" like a Celiacs kid he said, Dark circles, etc. But her blood test (around 2 years old) came back negative. Now she is still VERY underweight ,at 3 years old and 24 lbs. So now I'm wondering....could she actually have it too? However, she doesn't have severe diarrhea ever like the baby gets.

Anyway, for those of you with babies, do you think there's any chance Violet (the baby) might outgrow this? Does it sound like she might have it?

Thanks for any advice! I'm so glad to find a link to gluten free baby products and food on here!

Linda

[shayesmom]

Hi! My name is Linda and I have 3 DD's, 5, 3 and 9 months. My 9 month old has gradually been losing weight. Her growth chart has recently flattened out and she's now in the 5th percentile and they are getting worried. I casually mentioned to the Dr. when they started asking about her food intake that she can't eat a lot of foods b/c they give her REALLY bad diarrhea. No Cheerios, no oatmeal, no rice cereal, they all give her diarrhea so I've been sticking to fruits and veggies. She also likes those Gerber Poofs but those give her a face rash. I thought maybe the diarrhea was an intolerance to stuff like that b/c she was little but the Dr. said she COULD have a gluten allergy or Celiacs.

Oh and I don't know if this is a connection but I stopped nursing her at 3 months old. Whenever I would eat anything like whole wheat bread or brown rice she would SCREAM like she was being murdered. Seriously, it was awful. I thought she was sensitive to whole wheat. Anyway, we switched to formula and she's been fine.

So could she outgrow this? Or can a 9 month old really be allergic to gluten and have Celiacs already? They said they are going to give her some time and if she's still sensitive run the blood tests later.

Ok, now onto the wierd thing. My 3 year old was around the same age ALSO diagnosed with FTT, she saw a GI Dr. who really thought she had Celiacs she "looked" like a Celiacs kid he said, Dark circles, etc. But her blood test (around 2 years old) came back negative. Now she is still VERY underweight ,at 3 years old and 24 lbs. So now I'm wondering....could she actually have it too? However, she doesn't have severe diarrhea ever like the baby gets.

Anyway, for those of you with babies, do you think there's any chance Violet (the baby) might outgrow this? Does it sound like she might have it?

Thanks for any advice! I'm so glad to find a link to gluten free baby products and food on here!

Linda

Linda,

It sounds very probable that both your children have celiac...or in the least an extreme sensitivity to gluten. And if so, they will not "outgrow" it. The symptoms may change and get better or worse along the way, but it won't change the fact that they will always react and that it's causing damage.

I truly don't mean to dash your hopes in one small paragraph. But the reactions you are seeing are fairly good indicators that this issue is most likely the culprit. And although this is a tough issue to stare in the face adjust to...it is best to address it now, rather than later. The blood tests are highly unreliable in children this young. That doesn't mean that pursuing blood tests and endoscopy is a useless endeavor. It just means that no matter what the tests are, you really should follow up with an elimination diet and allergy testing (in case other food allergies are present as well). And if you're going to test....do it now. Don't wait for some point after going gluten-free. Believe me, if you go on the diet and see your children improve....you won't want to go back for a gluten challenge. And even if you do try it, the chances of getting a diagnosis will shrink dramatically.

My dd also presented with the same symptoms you are describing at a very young age (9 months). It took us 6 months of testing and we still came up with negatives for celiac disease...yet the diet yielded vast improvements in a mere 24 hours of dietary trial. My dd is almost 5 now. And the reactions are still there. She'd doing incredibly well on the diet. And as hard as it has been....I wouldn't change a thing. We've learned so much as a family and the rest of us have gone gluten-free and have reaped a windfall of health benefits. Now I look at our early struggles as a blessing in disguise. For most, it takes DECADES of poor health to eventually figure this problem out. We were lucky to discover it so early.

[RiceGuy]

Echoing what shayesmom has said, an intolerance is for life - it really doesn't ever go away. Though this doesn't necessarily mean Celiac, it doesn't change how to address it, which is a gluten-free diet. And you need to know that children often have a certain period where symptoms seem to lessen or disappear, but this in no way means that there isn't damage being done from ingesting gluten.

As for testing, again, it is highly unreliable for young children. Also keep in mind that even if every test came back negative, you already know that certain foods cause your child tremendous physical distress. So I think my first goal would be to narrow down all the foods that cause a problem (if there are any besides gluten). It does sound like rice may be a problem, and rice is gluten-free of course. However, it depends on what other ingredients might have been present. It would not be unusual for your child to have or develop an intolerance to dairy, so do watch for that. Other common intolerances are to soy, corn, tree nuts, peanuts, tomatoes, nightshades, and probably a few I'm not recalling ATM.

So glad you are on top of the situation. It sounds like you've gotten to the heart of it.

[kbtoyssni]

I wanted to emphasize the difference between allergy and celiac. They are very different reactions in the body, an allergy being more immediate. Celiac is an autoimmune disease and is more of a delayed reaction.

Kids can outgrow allergies. But they will not outgrow celiac. I'm going to guess you've got celiac here. I'm not sure how common gluten allergies are, and your symptoms sound like celiac.

Celiac is something you can be genetically inclined to get, but it often takes a trauma to the body to actually develop. That's why some people don't get it until later in life. Birth might have been the trauma that triggered your daughter's. Testing in kids this young is very unreliable. She simply hasn't had enough time to develop a lot of damage to her intestines or for antibodies to build up in the blood stream (this is a good thing IMO!). But from her screaming, you can see that damage is occurring. If testing comes back negative, I'd encourage you to try the diet or do enterolab testing. If she's got it, there's no point in keeping her on gluten, continuing to do damage in a developing body just to get a positive. As a parent, you'll know if gluten is the issue if you take it out of her diet.

As for your other child - definitely get her tested and try the diet. Everyone's symptoms are so different that it's unlikely both your kids would have the same ones.

[Ursa Major]

I agree that likely both your daughters have at the least a severe gluten intolerance, maybe celiac disease (same treatment, the gluten-free diet).

My oldest granddaughter has multiple intolerances. As a baby and young toddler she was covered from head to toe in eczema, which cleared up when a dairy intolerance was discovered, and she was taken off dairy.

But still she was always too skinny (even though tall at the same time) and had dark circles under her eyes.

When my daughter finally took herself and her five children off gluten last year (when Emily was seven) her dark circles disappeared within a week, and she started gaining weight immediately.

Her younger brother (by two years) had previously NEVER had a solid bowel movement (even though it wasn't quite diarrhea yet, but close) and was so thin that you could count every rib. And boy was he moody and emotional! He would cry for hours, being inconsolable for the littlest thing. Plus he would get awful pains in his legs, which were declared growing pains (there is no such a thing, by the way).

After my daughter eliminated gluten, he suddenly became stable mood wise, stopped being a 'wimp' (they often treated him as if he was, not knowing that it was a food issue) and rarely cries now. Two days after he stopped eating gluten he had his first solid bowel movement ever, and he started gaining weight immediately. Now they know that the leg pains are caused by gluten and red food dye.

I am telling you this to show you that celiac disease rarely causes the 'obvious' symptoms, especially in kids. Your older child sounds like a mix of those two grandchildren of mine.

The baby sounds like another granddaughter (by a different daughter), who is seven months old. She'd have terrible 'colic' and scream and scream. My daughter had her tested for intolerances when the baby was four months old (which are corn, dairy and yeast). Rather than put her on a bottle, my daughter (who incidentally tested positive for the same intolerances, plus some others) stopped eating the offending foods and now has a happy, thriving baby.

Her older daughter (now 19 months old) had total blowout poops that no diaper could hold in several times a day. Plus, she had developed awful temper tantrums, she would totally lose it about five times a day. I had my daughter test her as well (I paid for both children's tests, because the other grandmother has celiac disease as well, and I was convinced that the older one had celiac disease and couldn't see her suffer). She tested positive for all gluten grains as well as dairy.

Now that she is off dairy and gluten she is a different kid! No more temper tantrums, and no more diarrhea, either.

[Worriedtodeath]

The testing and biopsy are so unrealible in children this young that it is laughable that a dr even insist they do them. The only positive is that the biopsy will rule out any other possibilities and pick up any possible problems if done right. We started this with our 9 month old and now at 21 months we still do not have a dx because everything has come back negative except a lactase deficiency. However, she's been off of gluten almost 3 weeks and the changes are dramactic and she's gained up a pound!! The diet has confirmed she has a definite problem with gluten/wheat but no test has backed this. We too had the child that 3 drs swore had Celiac and would come back with a positive. She hasn't. But we are gluten-free free because it is the only thing that has worked. It is making wonderful improvements for the other kids as well.

Stacie

[3groovygirls]

Thanks everyone!

That's really interesting about the test. Emma (my older DD) her GI Dr. never even mentioned that the test may not be accurate on her b/c of her age! Now I'm really curious! At what age IS it accurate? I may have to experiment and take out her gluten and see if she grows.

With Violet, yup, if I cut out the oats and baby cereal she sleeps through the night, no diarrhea, no crying, etc. If she has Cheerios, diarrhea all night long, she wakes up 3 times a night, she's just miserable! It's really easy to avoid with her for now. I'll be curious to see if she grows this month till her next weight check without it. I hope it is just an intolerance or allergy that she can outgrow, but if it's Celiacs then she can't. So then, if you were in my shoes, what do you do, cut it out and retry (say Cheerios) in a few months? If she still reacts as badly wait a few more months? At what age would you wonder if it was Celiacs vs. intolerance/allergy?

Thanks for all your help! I'm really especially curious about my older DD who had the test and it was negative....She loves full of gluten food - pasta, pizza, etc.

Linda

[Ursa Major]

It sounds like your older daughter is addicted to gluten, which is what happens when you are intolerant to it. It is true that whatever you crave is usually what you are allergic/intolerant to.

The testing isn't reliable in children under six, and even after that (including for adults) it isn't all that reliable. Many people get false negatives and are then told by their doctors that they can't have celiac disease and shouldn't go on a gluten-free diet.

In reality, if your results are positive, then it is almost 100% guaranteed that they are accurate. False positives are almost unheard of. But if they are negative, celiac disease has NOT been ruled out, because false negatives are extremely common.

Your baby's reactions are so bad, it is not very likely that she will outgrow it. It would be best if you just accept that she can't have gluten and move on. You might want to try to make your house gluten-free, because since it is genetic your kids got it from somebody.

You never know which of your own problems (that you would never connect to gluten) will suddenly go away.

By the way, failure to thrive (which includes not growing) is the most common symptom in babies and toddlers.

And whether it is celiac disease or a gluten intolerance doesn't really matter. With celiac disease your villi are destroyed, and with gluten intolerance especially your nervous system and brain is affected, but it often attacks the intestines as well.

Either way, only a gluten-free diet will make you well. Neither one is worse than the other, they are both bad and can eventually kill you.

[shayesmom]

I hope it is just an intolerance or allergy that she can outgrow, but if it's Celiacs then she can't. So then, if you were in my shoes, what do you do, cut it out and retry (say Cheerios) in a few months? If she still reacts as badly wait a few more months? At what age would you wonder if it was Celiacs vs. intolerance/allergy?

Linda

You may want to have her specifically tested for wheat and oat allergy. I don't believe that there is a test for gluten allergy...though it's been a few years since we were at that stage and things may have changed.

As for being an allergy that can be outgrown...I have serious reservations about this topic. From what I have seen, the IgE (histamine) part of the reaction may go away. But in many cases, I have seen it turn into an IgG reaction (more in line with an immunological reaction). I am seeing many adults going to our health clinice with serious, debhilitating and chronic diseases. One of the treatments our doctor employs is the removal of all previous food allergens from diet (along with gluten and casein). Invariably, the patients respond and many appear to "miraculously" get well. I don't believe there is anything miraculous about it. I think that the manifestation of their "allergy" just changed on them as they got older. I don't believe that allergists have a very firm grasp on this concept. We measure progress through tests....not through overall physical observation. This issue can be tricky and there is a lot that is unknown and completely misunderstood. I do not believe that the medical community is done "connecting the dots" on this one.

I think that you are on the right track by removing the offending foods. If this was an allergy, you probably should remove it from diet for at least a year. The immune system remembers. Continually reintroducing an allergen will reinforce the reaction. By witholding it completely for a year or more, you may be able to retrain the immune system not to react with histamines. The problem with gluten is...it's insidious. Even the most careful of people will have random exposures. The chance of this increases dramatically in homes that aren't completely gluten-free.

You still have some major decisions to make. But I am sure that you'll find the path that is right for you and your family. Your best bet is to keep reading up on this and spend time observing your children. Answers present themselves in rather strange ways at times. You just have to be patients and keep looking for them.

[kbtoyssni]

As for being an allergy that can be outgrown...I have serious reservations about this topic. From what I have seen, the IgE (histamine) part of the reaction may go away. But in many cases, I have seen it turn into an IgG reaction (more in line with an immunological reaction). I am seeing many adults going to our health clinice with serious, debhilitating and chronic diseases. One of the treatments our doctor employs is the removal of all previous food allergens from diet (along with gluten and casein). Invariably, the patients respond and many appear to "miraculously" get well. I don't believe there is anything miraculous about it. I think that the manifestation of their "allergy" just changed on them as they got older. I don't believe that allergists have a very firm grasp on this concept. We measure progress through tests....not through overall physical observation. This issue can be tricky and there is a lot that is unknown and completely misunderstood. I do not believe that the medical community is done "connecting the dots" on this one.

Interesting. Do you happen to know of any research done in this area?

[shayesmom]

Interesting. Do you happen to know of any research done in this area?

Unfortunately, I don't know of any specific research being done on this. I can only say that it's a basic method being used by many alternative health care doctors. And even then, I don't know if they've fully recognized the connection. Alternative health care providers are usually aware of the gluten/dairy connection in chronic health problems. Even so, most link dairy to the issues more than gluten. I can say that I did run across this topic several years ago on an alternative site that specifically addressed food allergy. It was an interesting article, but I don't remember if they cited any medical studies. My observation comes from spending a lot of time in an alternative health care clinic talking with patients and also from feedback from friends that I've referred to this clinic. Several have mentioned that they had childhood food allergies and that they were surprised to find that removing those specific allergen helped their conditions tremendously. The same has held true in my own family, between my sister, myself and my dd.

It may be a bizarre coincidence, but at this point, I'm not taking any chances. I've already learned to cook without these ingredients. Why change now?

[RiceGuy]

My observation comes from spending a lot of time in an alternative health care clinic talking with patients and also from feedback from friends that I've referred to this clinic. Several have mentioned that they had childhood food allergies and that they were surprised to find that removing those specific allergen helped their conditions tremendously. The same has held true in my own family, between my sister, myself and my dd.

I agree. IMHO, expecting the immune system to suddenly stop reacting is like expecting a person's genetics to spontaneously mutate. Rather, I believe that just as with gluten, our immune system gets tired, bogged down, and stressed out. Also, we get accustomed to how we feel, and literally begin to ignore the signs of ill health. We just get used to feeling that way, and stop taking notice.

Since going gluten-free, I have noticed innumerable things only after they went away. I still notice things from time to time, and I suspect there are many I'll never become aware of.

[Mom23boys]

As for being an allergy that can be outgrown...I have serious reservations about this topic. From what I have seen, the IgE (histamine) part of the reaction may go away. But in many cases, I have seen it turn into an IgG reaction (more in line with an immunological reaction). I am seeing many adults going to our health clinice with serious, debhilitating and chronic diseases. One of the treatments our doctor employs is the removal of all previous food allergens from diet (along with gluten and casein). Invariably, the patients respond and many appear to "miraculously" get well. I don't believe there is anything miraculous about it. I think that the manifestation of their "allergy" just changed on them as they got older. I don't believe that allergists have a very firm grasp on this concept. We measure progress through tests....not through overall physical observation. This issue can be tricky and there is a lot that is unknown and completely misunderstood. I do not believe that the medical community is done "connecting the dots" on this one.

That is exactly what we were told by our alternative specialist. She said to NEVER mess with gluten or casein -- if you have ever had any kind of a positive test or diet reaction, consider yourself "allergic"/sensitive/intolerant for LIFE even if you no longer get anaphylaxis, the "d", rashes or whatever your reaction was.