Baby Update

[Worriedtodeath]

I took the baby back to the ped for her 2-year well check. 2 months ago she was in there for a follow up visit to discuss the idiot gi

[gfpaperdoll]

congratulations!!!! & please do not believe the doc no one outgrows celiac, or gluten intolerance ...

[Worriedtodeath]

Seems that my ped has been doing some research and has come across some stuff about an actual gluten allergy instead of intolerance. Much like milk allergy vs milk intolerance. There is a difference. She didn't feel that she could outgrow Celiac/intolerance but if it is this new "allegry" then it stands to reason she could outgrow it like kids do wheat and milk allergies. However, the ped did say if we do ever reintroduce and she has any return of symptoms than stop because trying to figure out if it is Celiac, intolerance, or allergy, isn't worth it given the current murky info and faulty testing. I think we are just on the tip of the iceberg concerning Celiac/gluten intolerance and in years to come will discover whole new aspects to this that no one had been able to distinguish between before.

Stacie

[Fiddle-Faddle]

Seems that my ped has been doing some research and has come across some stuff about an actual gluten allergy instead of intolerance. Much like milk allergy vs milk intolerance. There is a difference. She didn't feel that she could outgrow Celiac/intolerance but if it is this new "allegry" then it stands to reason she could outgrow it like kids do wheat and milk allergies. However, the ped did say if we do ever reintroduce and she has any return of symptoms than stop because trying to figure out if it is Celiac, intolerance, or allergy, isn't worth it given the current murky info and faulty testing. I think we are just on the tip of the iceberg concerning Celiac/gluten intolerance and in years to come will discover whole new aspects to this that no one had been able to distinguish between before.

Stacie

Hopefully in years to come, much more will be understood about celiac and gluten.

Kids DON'T outgrow wheat and milk "allergies," though. What happens is that their intestines heal, and they can consume wheat or milk without NOTICEABLE symptoms--but the damage is occurring, all the same. Eventually, there is enough damage to cause a leaky gut, at which point the immune system goes kaflooie.

Unfortunately, many doctors seem to believe that if there are no symptoms, the problem is permanently "fixed." That's what Western medicine is based on, fixing symptoms. Not looking at root causes of the symptoms, or preventing them from ever returning...

[Worriedtodeath]

That's why the intestional allegry and leaky gut research is so necessary. I'm pretty sure there is not any research or long term studies following milk allergy/wheat allergy kids who's symptoms disappeared and went back on those two and what happened. We're just now mainstreaming the idea that you can be "allergic" to something and have no IgE response. what if the discovery is made that there is a completely different response in the intestines or other organs but the effect is still "allergy" involving other IG's. Or maybe the lack of certain ig' s causes problems. Interestig since testing of ALL IG levels is rarely done and thus connections aren't being made if there any to make. Some research now points out that certain proteins that are crossing the gut barrier may be behind various diseases. It will be exciting to see research turn to the idea that the things you are eating may be the cause behind illness. It seems that after figuring out that leaving out certain things in your diet can cause things like rickets and scruvy (sp?) the leap to the idea that ingesting certain foods in certain people could cause problems was never made. Perhaps when they look at stuff that way, a lot of diseases may be avoided all together.

Regardless, it will be technologic improvements and improved tests that bring us closer to figuring this stuff out. But for now we are all lumped together

[Ursa Major]

Hooray for the baby having grown, and for having a reasonable doctor!

As for ever re-introducing gluten to see what will happen, my personal opinion is, that it is a terrible idea.

Until the family moved in December, I was babysitting three little boys three times a week. The oldest had a severe dairy allergy as a baby and young toddler. According to his allergist, he outgrew the allergy by the time he was four (he now apparently has outgrown his peanut allergy, too, whatever).

NOBODY believed me that the child not only still reacted to dairy, but that he reacted to wheat as well! It was very, very frustrating for me to be expected to feed him all the foods that I knew he shouldn't be having.

He had skinny arms and legs, not much of a bum and a hard, round belly (I see red flags going up in people reading this ). He had dark shadows under his eyes. Every time he ate or drank anything with dairy, or ate wheat products, he would get uncontrollably hyper and nasty.

Normally this boy was happy, friendly and easy to get along with. But it was a complete personality change whenever he ate those foods. The worst (a combination) was macaroni and cheese.

Of course, I was constantly glutened there. So, together with the growing frustration of seeing children that felt much like my own grandchildren, due to spending so much time with them, I guess it was just as well they moved so far away that I can visit them only once every few months.

I agree that you don't outgrow true allergies, your reaction just changes.

And with a gluten intolerance it is really worse. When the villi have healed, and the person has been well for years because of being gluten-free, often (especially in children and even more so in teenagers) there will be NO noticeable reaction when reintroducing gluten.

So, then the doctors and parents (and the teenagers themselves) will claim they are healed, and will happily eat gluten for years, apparently without doing any harm.

But then, in their twenties, sometimes thirties or forties, autoimmune illnesses will show up. Like Grave's disease, or Hashimotos. Maybe the gall bladder will be diseased and has to come out. They will get fibromyalgia. Or maybe neuropathies. And, oh yeah, constipation and sometimes diarrhea. How about brain fog, ADHD or schizophrenia? Aggression, angry outbursts, maybe bi-polar disease.

Those couldn't possibly be linked to an intolerance you had outgrown, right? Actually, those and many more can be the sneaky problems that can crop up from damage being done by gluten (and dairy/soy as well), without any of the 'classic' celiac disease symptoms being present.

Personally, if my child would be obviously reacting to gluten by failure to thrive, and started growing after removing gluten, I would NEVER want to reintroduce gluten to that child at any age to see if the kid had outgrown the gluten intolerance or allergy. Because it could cause awful problems later on in life.

[Worriedtodeath]

THe first sign I see when anyone around eats dairy is horrible brain fog and gluten makes them evil. I hadn't thought about one day everyone NOT reacting to gluten or dairy in some noticeable way that you could mark up to what you ate. I'm still so stuck in controlling gluten that a day when we don't run to the bathroom dying from cross contimanation hadn't crossed my mind. Rigth now we react to everything it seems including crumbs on the table. I've banned people from even bringing gluten in the house now. Maybe in 20 years better tests will be around or certain diseases will have been discovered to be caused strictly from diets containing gluten or dairy. And they will have proven it better than the whole eggs and fat will cause you to have a heart attack route they were on a few years ago. IT will be interesting to see where this disease leads in 50 years.

[Fiddle-Faddle]

That's why the intestional allegry and leaky gut research is so necessary. I'm pretty sure there is not any research or long term studies following milk allergy/wheat allergy kids who's symptoms disappeared and went back on those two and what happened.

No, doctors have been saying for YEARS that you can outgrow milk and wheat allergies. Heck, doctors used to say that you can outgrow celiac! (Some idiot doctors still cling to this.) THEY ARE WRONG.

I think that the research already out there shows how wrong they are. Remember, it only takes 1/16th of a piece of bread to produce MEASURABLE damage to villi--regardless of the lack of noticeable symptoms.

People with DH often have no villi damage. Gluten can wreak all kinds of damage if you are gluten-sensitive. How on earth will you be sure that your child has "outgrown" a sensitivity to gluten, whether it be celiac, intolerance, or true allergy? An invasive and dangerous test (endoscopy/biopsy, which is NOT necessarily accurate)? Bloodwork (which is useless if you are gluten-free)?

[elisabet]

I took the baby back to the ped for her 2-year well check. 2 months ago she was in there for a follow up visit to discuss the idiot gi

[Fiddle-Faddle]

Yes, yes, you did an awesome job!!!

I was wondering why the doctor is thinking CVId? Not arguing, just wondering if bloodwork or symptoms pointed that direction.

I also wanted to add that many older people here on this board were told that they were allergic to wheat as babies or children, then told that they had outgrown it when they were older, only to begin various autoimmune disorders. If I remember correctly, most of them report at least a few years without symptoms, which is why doctors thought they'd outgrown the allergy. But it seemed that nobody with an MD ever put it together that a past diagnosis of wheat allergy or celiac coupled with gluten consumption as an adult adds up to autoimmune disorders (which become progressively more severe with further exposure to whatever is triggering them).

I don't understand which allergies can and can't be outgrown. My husband used to be allergic to eggs and bananas, and eats them now with no problem, and he has no autoimmune disorders that we are aware of. His nut allergy has become much less severe (not that he ever eats them on purpose, but accidental exposure doesn't cause the same severe reaction it used to).

But with all that I've read (even here on this board from people who were told that they had outgrown their wheat allergy), I'm convinced that reactions to gluten and casein must be different from eggs, fruit, and nuts.

Has anybody found any interesting or illuminating info on this?

[Worriedtodeath]

Thanks everyone!! all that time in the kitchen has paid off!

I agree fiddle faddle that something about certain allergies is different. I really wonder if it has to do with which Ig is involved.... I feel that IgE's can be outgrown or lessened or worsened in some cases. I don't think there is much else known about IgG and all it's subclasses and IgM is virtually unknown. Maybe some of those are causing a different kind of reaction (or lack of reaction) and until all the ends and outs of that have been discovered, all those questions will remain unknown. Perhaps the gluten and casein porteins are the only ones that cause a chemical type response (is it opid ??) instead of the typical immune response. I don't think research has the tools to figure out some of this.

I was highly allergic to bee stings. All kinds. Bad enough to have it suggessted that i should maybe do allergy shots to lessen the reactions. Carried around an epipen for years to give me enough time to make it to the hospital. I was stung while pregnant with my second and had NO REACTION at all. Not even swelling or a red mark. Now maybe it was prengnancy horomones. I haven't been stung since so I don't know if I still react but just found that really weird.

My oldest has only had his severe pollen,mold, etc allergies improve on the gluten-free diet. Why?? Years of allergy shots hadn't done much. They did relieve the every single day issues but never touched the seasonal issues which still required tons of meds to get thru. Now he needs nothing.

I also wonder if those that outgrew it, if symptoms were just overlooked. Like moodiness, depression, anxiety all those things that can be contributed to the "teen" years or are labled as "growing up" or a "stage". Perhaps they really did respond just not in ways most drs looks at. Just this year, the ped society announced that dyes and persatives could cause ADD and such. So I wonder if the "mental" signs are and have been simply ignored all these years.

The ped is considering CVID and IgG subclass deficiency because in SOME cases how be it rare, gi issues are reported as the main problem. Family history as in me, maternal aunts and uncles for about 4 generations have all the lung issues associated with CVID. Everyone has either pneumonia, bronchitis, or bronchiectasis and are all labled as chronic. I have only had 6 cases in the last 6 years because I refuse to go anywhere there are sick people and won't let any sick people - including grandparents- in my house. Hubby is the only one who gets in sick and depending on what he has depends on how close he gets to us LOL! Otherwise, I would have bronchitis 3-4 times a year like my brothers. So the ped is thinking just perhaps there is something in my family. Considering how anal I am about being around sick people and that my kids do not attend school or daycare, the thought is that we may have simply avoided enough sickness to not have the types of sickness kids associated with CVID have. We basically hibernate every flu season and I simply don't take the kids where sickness is going round. It has proven the only way to keep us from having one of the above issues. So that's why. She feels it may just be a long shot but then again it may be the bull's eye. But if it is - how do you explain it disappearing on a gluten free diet??

Things are a mystery.

Stacie

[Worriedtodeath]

After reading this makes me wonder if everyone who has negative Celiac tests should get checked for CVID

Open Original Shared Link

Hope the link works if not go to Wikipedia and search for CVID

Stacie

[Ursa Major]

Wow, I read through the symptoms list, and I had a ton of those as a kid and teenager! I had bronchitis at least once a year, I had pneumonia several times, I used to get boils frequently, much of the time swollen lymph glands, I had shingles a few years ago. The only reason I rarely get sick is, that I stay away from people because I rarely go out, I believe.

But I stopped having bronchitis so often when I eliminated the foods I am intolerant to. Interesting.

My son got sick every single time I took him to the doctor's office after he unfortunately weaned himself at the age of nine months. Finally, I refused to take him for any reason until he was well over two years of age.

Before that, every time he had passed a milestone, like sitting up, crawling, cruising around furniture etc., he'd get sick and had to start from scratch. He even got the measles after taking him to the doctor's offices for his vaccination (I didn't understand about vaccinations being useless and dangerous then). The nurse said it was definitely measles, but the doctor claimed it wasn't. He got pneumonia while having the measles when he was 12 months old. That was the last straw, and I avoided doctor's offices after that. My son didn't walk until he was 18 months old because of all the setbacks, I am sure.

His immune system seems to have developed properly at some point, because he was fine after he was about 2 1/2.

[Worriedtodeath]

That's what I said to when I read it! WOW! would be interesting to see if current research has it backwards. That Celiac isn't the autoimmune issue but is a symptom of immune deficency that results in Celiac which in turn triggers other immune diseases. Maybe lacking certain IG causes the problem or sets you up for the problem. Would be interesting to see if what all biopsy proven Celiac's Ig levels across the board are. We all ready know that IGA deficiency skews the results. What if IgG deficiency is what actualy sets you up for Celiac or MS or Fibro or diabetes or the elusive who knows what Igm does causes stuff? A real cure could possibly be achieved then.

THere is also a transient issue. Some of the Immune deficiencies except a couple that end tragically are dx until after age 2 because they could just be transient. The body then kicks in gear and the antibodies appear. I think CID and IGg are two that could pass with age.

[Fiddle-Faddle]

I wonder if there's a relationship between the CVID and being formula-fed? Ursa, I think you did breastfeed, but if you and your son both had celiac stuff going on, then maybe the gluten/casein going through the breastmilk might be a differing relationship with CVID?

Now, compared to most celiacs, I seem to be the picture of health (hardly ever get sick), so I don't know where I would fit in except--I did get shingles at age 25, and bronchitis/pleurisy a few years back (during the height of my gluten consumption, before I knew anything about gluten). During the shingles episode, my mom came and took care of me--which meant I ate nearly gluten-free, not because she knew anything about gluten, but because she never served pasta, cereal, or bread except for an occasional sandwich on stone-ground whole wheat (lower gluten).

Interesting--very, very interesting...

[Ursa Major]

I wonder if there's a relationship between the CVID and being formula-fed? Ursa, I think you did breastfeed, but if you and your son both had celiac stuff going on, then maybe the gluten/casein going through the breastmilk might be a differing relationship with CVID?

Now, compared to most celiacs, I seem to be the picture of health (hardly ever get sick), so I don't know where I would fit in except--I did get shingles at age 25, and bronchitis/pleurisy a few years back (during the height of my gluten consumption, before I knew anything about gluten). During the shingles episode, my mom came and took care of me--which meant I ate nearly gluten-free, not because she knew anything about gluten, but because she never served pasta, cereal, or bread except for an occasional sandwich on stone-ground whole wheat (lower gluten).

Interesting--very, very interesting...

Alison, I was breastfed only until about three months old. Of course, I breastfed my son. In fact, he refused any solids until eight months old, at which point he decided he liked those foods so well that he didn't want to nurse any more (foolish boy). I forced him for a while, but eventually gave up, as it wasn't enjoyable for either one of us.

I do believe he is gluten and dairy intolerant, but won't give up either. He didn't get much dairy from me, but has it all the time now that he is married and not living at home, as he is addicted to it (a sign that he is allergic/intolerant, of course).

He also would get terrible rashes whenever I ate anything red, strangely. So, while I was nursing him I had to stop eating strawberries, tomatoes, cherries etc., anything that was red. I didn't give him red food until he was well over a year old, at which point he seemed okay with those foods. Now I wonder if he should eat them.

[colorado]

I know this is an old thread and I thought I would chime in. I know this involves your young child so it may not be the same...

I have CVID, and they say I have celiac. Currently from research on my own and some new doctors we are working on disproving the celiac disease thing (for me) as patients with CVID can have something that almost mimics celiac disease. The difference is, your body isn't attacking itself over the protein, you just have have the damage from other causes. I also got a whole big plate of ravioli recently from a restaurant that serves a gluten free version and I had zero problems. In the midst of a myraid of additional tests currently, lucky me.

On to the items I wanted to bring up that may help out. With celiac disease it can cause a drop in IGg levels because it gets lost through the gut. Changing the diet to a gluten free diet would solve the celiac damage and in turn should cause those IGg levels to come back up.

CVID just doesn't go away, though it is supposedly curable for children under the age of 2 via a bone marrow transplant or something along those lines. I was diagnosed as an adult, I get monthly infusions of IGg, it really is a miserable thing.

Long term health care costs will be much less if your child has celiac disease and they are young enough to not "miss" any foods.

I wish you the best of luck, if you want any more information on CVID let me know and I will do my best to answer questions.