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Well I Need To Change My Signature :(

Guest AutumnE

By Guest AutumnE
in Parents, Friends and Loved Ones of Celiacs

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Guest AutumnE
Guest AutumnE
Posted

I have been giving my daughter low doses of gluten to see if she seemed to be having a problem after a while of being gluten free and she had a reaction I believe.

Tonight she has a rash on her labia and it is itchy kinda looks dotty. I always keep her dry and put a barrier cream of some sort usually aquaphor. Also at her dentist visit the other day he noticed her enamel looking a bit weak? I told him we do have celiac disease in our family and Im getting her tested and he said there were no cavities yet but it will lead to them possibly.

She had reflux as a baby for six months but seems to be fine with it now. Man, it was hard enough for me as an adult to deal with let alone a little kid whose inlaws do not care if she had a hard time with her diet and would definitely gluten her without thinking :rolleyes: Im fine with me having it, it doesnt bother me at all but the thought of her having it at such a young age breaks my heart :(

My nephew who is six months, my niece who is almost 2 and my older sister all were just diagnosed with celiac disease.

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Rikki Tikki Explorer
Rikki Tikki
Posted

Autum:

I don't mean to seem as if I am coming down on you, but why if you suspect celiac would you give your daughter even low amounts of gluten?

It seems to me that it would be easier to have her grow up being gluten free rather than have her change to gluten-free after she is older.

If it were my daughter and I suspected celiac I would stop the gluten and see of she get's better.

I just don't see the sense in an official diagnosis if she or anyone feels better without gluten.

Best of luck in this

Guest AutumnE
Guest AutumnE
Posted

I havent ever had any suspicion that she has celiac problems till now. I kept her off gluten just because I am gluten free with no true diagnosis yet since that is what I cooked. I talked to a gi recently and was told that keeping her off gluten even if she does not have gluten intolerance gene that it would make her body sensitive to it which I dont want to limit her if she truly would never have a problem, but I am nervous that it just wont show up yet.

I dont require an official diagnosis this was enough proof from just a 1/4 cup of regular mac n cheese total over two meals, not alot sorry if it came across that way. This is the first time I questioned it with her since she is a fine totally normal toddler with no problems till now. I also ordered the enterolab tests today to see if she has the gene, even if she doesnt Im still keeping her gluten free. The dentist visit was the first time he saw a problem and we have been going since she was a year old. It may be a coincidence still if the gene test comes back fine but I dont want to take a chance.

I always figured her reflux and was told by dr's it was normal since she was a little early, it may still be only that but I had no idea till research today that it could be related.

CantEvenEatRice Enthusiast
CantEvenEatRice
Posted

Hi Autumn,

My 19 month old son just tested positive through Enterolab. I was really sad about it, even though I kind of suspected it. He never had any clear symptoms, but my gut told me something was off (occasional bowel issues, sometimes a strange diaper rash and eczema issues). His height and weight are normal and he seems happy and energetic. But I have already noticed that his tummy is less bloated today. I have Celiac myself and hate it so I certainly did not want him to have it. However, I try to look at it as I am helping to prevent a host of illnesses/problems he could develop in the future if left on gluten (that is what happened to me!). I am still suffering the consequences of a delayed diagnosis. But, I am still really sad about it. And I agree that trying to get an "official" diagnosis is very difficult and you will always question either way. In one way I am glad to get a positive from Enterolab, but in another way, I still question that it is 100% accurate. But I think the diet will tell the most. Good luck!

Guest AutumnE
Guest AutumnE
Posted

Thats the reason for me too :) It kills me but I would feel bad if I didnt change it even if the test comes back negative. I hate to think of her having the host of things wrong with her that I do. On a mission to become healthier is how I stumbled across celiac disease. I had never heard of it before even though I went through nursing school for two years. I'm glad to have the knowledge to help her that I never had when I was growing up. The only problem we have had is a heart problem with her.

Due to my nephew having seizures I recommended to my sister to have herself and her kids tested through enterolab and their results came back the other day with two gene markers but thankfully no damage they believe due to the antibody not showing up.

Its taking me forever to look up and research things, it is so involved for me but Im getting there.

CarlaB Enthusiast
CarlaB
Posted

What I'm confused about is what your doctor said about even people who have no problem with gluten will become sensitive to it if they get off of it. Is this really true? It just doesn't make sense to me. I mean, I can go for months without eating a certain food and I don't become sensitive to it. I'm not asking rhetorically, I really am curious.

eKatherine Apprentice
eKatherine
Posted
What I'm confused about is what your doctor said about even people who have no problem with gluten will become sensitive to it if they get off of it. Is this really true? It just doesn't make sense to me. I mean, I can go for months without eating a certain food and I don't become sensitive to it. I'm not asking rhetorically, I really am curious.

I've heard this before, but I think he is misinterpreting. I think that people who have a subclinical (symptomless) gluten intolerance will find that their health improves generally when they go gluten-free, but when they eat gluten again, they react just as though they had always been intolerant.

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CantEvenEatRice Enthusiast
CantEvenEatRice
Posted

Autumn,

Your signature sounds just like me! I have a lot of your problems as well. I was glad to read that your sister and kids tested negative through Enterolab. I actually like to hear about people testing negative because I was getting nervous that so many test positive. But at the same time, most people who test through Enterolab already pretty much know they have it so the high number of positives make sense. I still like to hear about negatives though. I think I will always be a little nervous that I made the right decision going with Enterolab. But I figure someday my son can do a gluten challenge if he wants to. Right now he cannot make such a big decision and the consequences of eating gluten could be huge if his diagnosis is correct. If someday research is published that says Enterolab is completely bogus then I will deal with that then. But from what I have read, it doesn't seem that Dr. Fine is in the business of pure money-making. Plus, I have read so many stories of people who are so ill, but test negative through blood and negative through biopsy. They then go on the diet and a miracle happens! I just don't understand why doctors won't just say, skip the tests and try the diet and see. It is all so very frustrating! I cannot even tell you how many doctors I saw starting at age 13 all the way until my diagnosis at age 25. I am now 28 and still do not feel very well. Just take it one day at a time. My son got a hold of a goldfish yesterday and ate it. So I know there will be some mistakes.

Guest AutumnE
Guest AutumnE
Posted

Carla- I was told since it was a toxin that your body will treat it as one if avoided. It wont be the same effects of glutening. He said there were low levels of toxins in vegetables and grains that need to be cooked in order to eat.

canteveneatrice- Actually they tested positive also with a double gene for the kids and a single one with my sister so her dh has a gene also. I do know of one person who tested negative to it on another board.

The gi doctor I saw said that the gene tests have been proven reliable however it does not classify it as celiac disease without the damage shown to the villi. He said gluten intolerance does not always manifest itself as celiac disease, studies still not out yet, but it puts you at great risk for it so he still monitors them and encourages a gluten free diet since it puts them at risk for developing it. When I get the results back he is going to do a biopsy regardless of the antibody showing up or not. He also gave me the name of a pedi gi to take my daughter to if any of her tests come back showing it.

CantEvenEatRice Enthusiast
CantEvenEatRice
Posted

I must have read your message wrong. Sorry about the positives, that stinks! But it is good to know. I hope you find out soon also.

Guest AutumnE
Guest AutumnE
Posted

It does suck but it is best to know before real damage can occur. Even though I wouldnt wish sickness on anyone its comforting to know my daughter will have family that understand instead of feeling odd or left out if she has it. My parents are going gluten free also since we get it from one of them.

My mom has bought only gluten free foods for a few weeks now in suppourt of her grandkids and me and my sister. We wont have to worry about being glutened over there either :)

Im the only one who has very obvious symptoms, I believe I was meant to have this or I wouldnt be able to help my daughter and my niece and nephew.

CarlaB Enthusiast
CarlaB
Posted
I've heard this before, but I think he is misinterpreting. I think that people who have a subclinical (symptomless) gluten intolerance will find that their health improves generally when they go gluten-free, but when they eat gluten again, they react just as though they had always been intolerant.

That makes more sense. And the thing is, they should be off it anyway!

prinsessa Contributor
prinsessa
Posted

I'm sorry that your DD might have gluten intolerance. I just found out this week that both of my kids have it. I thought for sure DS had it, but I wasn't sure about DD. DS is 3 years old and still only weighs 28 lbs. He also has only had a few solid bowel movements. I was kind of scared of testing the kids because I know how hard being gluten free is since i have been off gluten for 7 months. I knew I had to do it though because of the problems having undiagnosed gluten intolerance can cause. I'm glad I know now and this is their second day 100% gluten free. Good luck!

Guest AutumnE
Guest AutumnE
Posted

Hi prinsessa :)

Good luck with the change also, Im glad you have answers for your son and daughter. I do worry about the future with her in more ways than one. Feeling different like I always did growing up with asthma and epilepsy, cheating even when I didnt want too with my allergies just because I didnt want to explain, and feeling deprived from so many things. I hope by doing this so early we can avoid all they yucky intolerances I have that Im dealing with now. I think that has been more difficult than the gluten.

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