Some Heriditary Questions

[todzwife]

I just found out that my own MOTHER was diagnosed with celiac as an infant but my grandmother said "she outgrew it".

My mom stands barely 5 feet tall and 100 pounds and has been small her entire life. (Much like my own daughter). She has stomach problems that have been diagnosed as IBS, but I'm wondering if she really is celiac and didn't really outgrow it (is that even possible???)

Anyway, MY DD is tiny, has had very few solid poos in her life, cranky as a hornet, sleeps terribly, vomits randomly, and was just recently diagnosed as having a class IV wheat allergy. But I wonder if it's more than that.

She's going to be wheat free (not QUITE gluten free but close) as am I (I don't want to make her do it alone). So a test for celiac down the road would probably yeild a false negative???

Now I'm just rambling. What's the advantage to having a definate diagnosis of celiac if she will be nearly gluten free anyway? Is there any soft of benefit to having it "on paper' so to speak?

Thank you for taking the time to answer. I've been reading a lot about gluten and it sounds like it's total crap to be eating anyway and I'm wondering if we'd all benefit from eliminating it regardless...

[Guest j_mommy]

If your mother was dx'd with celiac as a child she still has celiac now(it was old school thinking then that a child would "out grow it" that thinking has proven untrue)

It is possible your child has a wheat allergy and celiac. However if she does have celiac...she NEEDS to be gluten free not just wheat free.

I would get her tested before she does the diet so you can know for sure....if she starts going wheat and gluten free before testing the tests will not be true.

Good Luck

[vanillazeis]

I just found out that my own MOTHER was diagnosed with celiac as an infant but my grandmother said "she outgrew it".

My mom stands barely 5 feet tall and 100 pounds and has been small her entire life. (Much like my own daughter). She has stomach problems that have been diagnosed as IBS, but I'm wondering if she really is celiac and didn't really outgrow it (is that even possible???)

Anyway, MY DD is tiny, has had very few solid poos in her life, cranky as a hornet, sleeps terribly, vomits randomly, and was just recently diagnosed as having a class IV wheat allergy. But I wonder if it's more than that.

She's going to be wheat free (not QUITE gluten free but close) as am I (I don't want to make her do it alone). So a test for celiac down the road would probably yeild a false negative???

Now I'm just rambling. What's the advantage to having a definate diagnosis of celiac if she will be nearly gluten free anyway? Is there any soft of benefit to having it "on paper' so to speak?

Thank you for taking the time to answer. I've been reading a lot about gluten and it sounds like it's total crap to be eating anyway and I'm wondering if we'd all benefit from eliminating it regardless...

My daughter was originally diagnosed as allergic to wheat, 4+ on the skin testing, maybe she is allergic, but she is biopsy confirmed diagnosed with celiac disease. We went wheat free at first, and when i started baking with oats (gluten-free ofcourse), and experimenting with cooking, i realized her symptoms got better, but then she started reacting to oats. When the dr. called and told me her RAST test (allergy blood test) came back negative for wheat allergy but positive for celiac, i told him "yeah, i thought so. I just realized her "wheat allergy" gets the same reaction from oats" Were ya'll diagnosed by RAST or skin testing?

I think there are alot of benefits for having an actual diagnosis. People are more reluctant to help out. Your child will fall into the 504 category for public school, you can have them accomodate her. I've heard that if you are diagnosed with celiac you are excused from living on campus for the first year of college, as well as excused from ever serving in the military, or being drafted anyway.

I also think Bayleigh's diet would be harder to stick to if i didnt know it actually damages her intestines. I know i would never let her cheat with wheat, rye, barley or oats. NO WAY. But she is also intolerant to dairy and soy, and i did let her eat a piece of fudge at Christmas, when the roommom of her class brought donuts for the class and said "bayleigh can have donuts right?" BLAH Point is, its hard to stick to a special diet. My daughters GI told me "your daughter cannot be 99% gluten-free, she must be 100%." He also told me to go about having gluten around her as if it was raw meat. as in if you touch gluten wipe off the countertop with antibacterial wipes, and turn on the sink with your elbow to wash your hands. Those two things really made me realize the significance of being 100% gluten-free. Maybe it's a little bit overkill, but it makes me able to sleep at night.

I would push for a blood test atleast. I hope you guys get this figured out soon. You need to know if its celiac, because people with undiagnosed celiac have a higher chance of developing secondary diseases, like type 1 diabetes. Plus long term effects of repetitive damage to the intestines. Untreated celiac can result in cancer. I dont want to scare you, but undiagnosed celiac is no good. If it was my kiddo with those symptoms, plus family history i would definately get tests done! Good luck!

[todzwife]

It was the RAST test...does that make a difference?

And her immediate responses were all negative. It was her delayed response that was a class IV.

[Ursa Major]

With your mother having celiac disease (and yes, she still has it, no doubt about that) it is very likely that your daughter has it too (and possibly you as well). If it is celiac disease, then almost gluten free is pretty much as bad as not bothering at all.

If you don't want to wait to put her on the gluten-free diet, and since the official testing is highly unreliable in young children, you always have the option of testing her with Open Original Shared Link. It is non-invasive and easy (not easy on the pocketbook, though).

They don't diagnose celiac disease, but gluten intolerance. But you will know what her genes are and can pretty much decide on that evidence.

Either way, if she tests positive, the treatment is the same, a gluten-free diet.

[vanillazeis]

It was the RAST test...does that make a difference?

And her immediate responses were all negative. It was her delayed response that was a class IV.

Yeah, they say that RAST testing is more accurate for food allergies and skin testing is more accurate for environmental allergies. I was just curious, because i suspect that Bayleigh's 4+ on the skin test was a false positive and actually more related to celiac then to an actual allergy. I dont really know if its possible for that to be the case, it might just be cooincidence, but it seems like if something is capable of damaging your intestines that it would also be capable of giving you a small hive if injected into your skin. I would say with a RAST test that high it is a true allergy, but it can still be celiac as well. Get the blood test!!!

[todzwife]

Yeah, they say that RAST testing is more accurate for food allergies and skin testing is more accurate for environmental allergies. I was just curious, because i suspect that Bayleigh's 4+ on the skin test was a false positive and actually more related to celiac then to an actual allergy. I dont really know if its possible for that to be the case, it might just be cooincidence, but it seems like if something is capable of damaging your intestines that it would also be capable of giving you a small hive if injected into your skin. I would say with a RAST test that high it is a true allergy, but it can still be celiac as well. Get the blood test!!!

So after talking to my G-ma, apparently the celiac diagnosis for my mother was nothing more than watching her symptom- severe diarrhea. She was in the hospital for 5 days on IV's and such. But there was not biopsy, no blood test. This was 50 years ago so who the heck knows.

I'm all paranoid though. I want to know if this is true celiac or if we are lucky and only have to avoid wheat, eggs, peanuts and soy LOL!

[vanillazeis]

So after talking to my G-ma, apparently the celiac diagnosis for my mother was nothing more than watching her symptom- severe diarrhea. She was in the hospital for 5 days on IV's and such. But there was not biopsy, no blood test. This was 50 years ago so who the heck knows.

I'm all paranoid though. I want to know if this is true celiac or if we are lucky and only have to avoid wheat, eggs, peanuts and soy LOL!

LOL isnt it funny to say lucky to only avoid wheat, eggs, peanuts and soy... I'm always thankful we still have eggs, not that we use them much, but it's nice to have to means to bake something decent. In your case I would be very thankful for dairy

I think i would still test for celiac with the history of being hospitalized over diarrhea. Hopefully it comes out negative, and it probably will, but then you can relax, and hey she'll probably outgrow her allergies! I just read that a peanut allergy has a 10% chance of outgrowing, and egg has a 50% chance, and everything else is way more likely, although the thing i read did say the more allergens you have the less your chances are of outgrowing But hey... your chances are still alot higher than outgrowing celiac

I think you'll be alot happier if you know for sure you arent dealing with celiac. Good luck!

[todzwife]

LOL isnt it funny to say lucky to only avoid wheat, eggs, peanuts and soy... I'm always thankful we still have eggs, not that we use them much, but it's nice to have to means to bake something decent. In your case I would be very thankful for dairy

I think i would still test for celiac with the history of being hospitalized over diarrhea. Hopefully it comes out negative, and it probably will, but then you can relax, and hey she'll probably outgrow her allergies! I just read that a peanut allergy has a 10% chance of outgrowing, and egg has a 50% chance, and everything else is way more likely, although the thing i read did say the more allergens you have the less your chances are of outgrowing But hey... your chances are still alot higher than outgrowing celiac

I think you'll be alot happier if you know for sure you arent dealing with celiac. Good luck!

Thanks I may save up for that enterolab test. It would ease my mind knowing if I need to avoid gluten entirely or not.

DD wasn't hospitalized, my mother was when she was about 18 months old. DD hasn't ever been in the hospital except when she was born (6 weeks early)

I'm actually finding that eggs are harder to avoid than wheat. BUT the allergist said that she'll be ok if she gets it occasionally because they all showed up on her delayed, not her immediate (meaning if she gets some eggs in say, Pamelas cookies it won't make her have an major reaction unless she eats a ton of them every day).

Thank you for all the advice.

[vanillazeis]

Thanks I may save up for that enterolab test. It would ease my mind knowing if I need to avoid gluten entirely or not.

DD wasn't hospitalized, my mother was when she was about 18 months old. DD hasn't ever been in the hospital except when she was born (6 weeks early)

I'm actually finding that eggs are harder to avoid than wheat. BUT the allergist said that she'll be ok if she gets it occasionally because they all showed up on her delayed, not her immediate (meaning if she gets some eggs in say, Pamelas cookies it won't make her have an major reaction unless she eats a ton of them every day).

Thank you for all the advice.

sorry, i didnt make myself very clear, i meant with a family history of being hospitalized for diahrrea. Well it's good she isnt expected to have a serious reaction to eggs, but still avoid them like the plague! I've read that the best chance you have of outgrowing a food allergy is strict avoidance. We avoid all my daughters allergens very strictly and she has never had a serious reaction. We still dont leave the house without her epi-pens, and teach everyone how to use it. I've never heard anyone talk about delayed reaction vs. immediate reaction, sorry im not familiar with that so i dont have any advice, but i would still be very cautious. The first time you are exposed to your allergen you wont have any reaction, but you form antibodies against it. the next time you are exposed you have a reaction. So it could just get worse and worse everytime your exposed. You may have already read all this, but just thought id tell you incase you havent had the chance yet! HTH!

[todzwife]

sorry, i didnt make myself very clear, i meant with a family history of being hospitalized for diahrrea. Well it's good she isnt expected to have a serious reaction to eggs, but still avoid them like the plague! I've read that the best chance you have of outgrowing a food allergy is strict avoidance. We avoid all my daughters allergens very strictly and she has never had a serious reaction. We still dont leave the house without her epi-pens, and teach everyone how to use it. I've never heard anyone talk about delayed reaction vs. immediate reaction, sorry im not familiar with that so i dont have any advice, but i would still be very cautious. The first time you are exposed to your allergen you wont have any reaction, but you form antibodies against it. the next time you are exposed you have a reaction. So it could just get worse and worse everytime your exposed. You may have already read all this, but just thought id tell you incase you havent had the chance yet! HTH!

Thanks!

They ran 2 tests I guess. The IGE which everything came back negative and the IGG where the allergies showed up.

To tell you the truth, I'm not completely sure what it meant, and the allergist told me to avoid wheat "but it won't kill her if she gets it now and then" as well as the others "as much as possible"

Who the heck knows what that means. LOL! For now we are wheat FREE (not QUITE gluten free, but it's mostly oats she's getting). If I don't notice a marked improvement I will try gluten free completely.

Eggs are a pain the butt though...it's in everything!

[vanillazeis]

Thanks!

They ran 2 tests I guess. The IGE which everything came back negative and the IGG where the allergies showed up.

To tell you the truth, I'm not completely sure what it meant, and the allergist told me to avoid wheat "but it won't kill her if she gets it now and then" as well as the others "as much as possible"

Who the heck knows what that means. LOL! For now we are wheat FREE (not QUITE gluten free, but it's mostly oats she's getting). If I don't notice a marked improvement I will try gluten free completely.

Eggs are a pain the butt though...it's in everything!

Be careful about oats... normal Quaker Oats cannot guarantee that they are gluten free... I've read that in the US oats are a rotated crop with wheat, so they cant be sure that wheat didnt get in there somewhere... like you said, it wouldnt kill her if she got a little wheat, but if she reacts to regular oats you wont know if it is actually a reaction to oats or a reaction to wheat.