Advice Re: Daughter

[fjnt]

Hi! I'm a new poster, but have been reading for a few weeks. My daughter is 4 and she's had tummy problems pretty much her whole life. She's older now and can voice what's going on. Every dr we've gone to said she has reflux. We've done everything. Tried 4 different meds, multiple times put her bed up, nothing works. Started down the reflux path again this fall with the same results.

Then about Jan she started getting worse. Throwing up multiple times a day, fatigue, complaining her legs hurt, she started taking naps and she has never been a sleeper. My huband brought her in they thought she had strep, because her throat was red. Did blood tests to check for mono and strep test. Everything came back normal of course, except her leukocytes were high and her granules were low, I think, could be the other way around. Go home live with it, there's nothing wrong. Two days later she had so much pain in her left hip she couldn't walk. More blood tests, everything normal, except for the leukocytes and granules and a liver part that was high. The nurse called and said she's fine. I said she's not walking she's not ok. (Thankfully she's walking now, but still complains of leg pain, hand pain etc) She got snooty and said then if I didn't believe her than get a second opinion. Fine. I found a gastro dr. The first thing she said was this girl is sick she needs to see a peditrician today. Yep, same old blood tests , everything normal. Now told to not come back until spring, she'll be better by then.

The gastro did order upper GI, which was normal. She said she thought she had celiac so she had the endoscopy and biopsies last week. She said she'd call Mon. Of course I finally called them on Thurs and the nurse called me back saying she's normal, except she has lactose intolerance. We took dairy out of her dairy since then and she seems worse. I truly think she has a gluten intolerance. She refuses to eat bread, pretzels, cereal etc because she says it makes her tummy hurt. I don't know if I should take away the gluten at the same time as the dairy though. Then I won't be sure which is hopefully making her better. But, if it will help, I don't want her to suffer any longer than she has to. Any ideas? Sorry about the long post.

[celiac-mommy]

You'll probably get a bunch of different ideas, but if it were my kid (and we did go thru this with our son), I'd just take her off gluten too. See how she does and after a few weeks, if she's doing better, re-intruduce ONE of the allergens to see if there's a reaction, then after another week or 2 re-introduce the other.

[fjnt]

Thank you. That's a good idea.

[GlutenGalAZ]

fjnt --

Im 26. Growing up I always had stomach issues, NEVER heard of celiac/gluten intolerance till last year when my mom heard about it and mentioned it to me. Ever since I was little I couldn't handle a lot of foods. I went to the dr's a lot and one of my dr's said oh you must be lactose intolerant so I cut that out, years later my new primary dr insisted I had acid reflux. I tried numerous medicines nothing helped some made me get terrible stomach pains. I thought I couldn't handle foods with preservatives at one point.

I don't have any children (but have nephews/nieces) but I agree with celiac-mommy....I would cut gluten out of your daughters diet. There are a lot of meals that you can still make that are pretty much identical to what you would normally eat but just have to substitute with gluten free items. You can make your own bread/rolls/buns or buy them. Even pizza you can buy frozen crusts or make your own. I would at least give it a try and see if things improve. The first month or less is the hardest on the diet (might notice mood changes where she is quiet at times or cranky) but things get better after the first 1-2 weeks approx. I know things have changes in such a positive way for me.

Best of luck.

[MDRB]

Doctors can be really frustrating at times.

It can take some time to recover from the damage caused by an intolerance which could be why your daughter is still not well. Keep in mind that a common symptom of celiac disease is an inability to digest dairy. I would probably take her off the gluten. Wheat, barley and rye are not really nutritionally valuable, so it certainly won't hurt her. It might take a while to see an improvement, so I would keep her gluten free for about four months.

Good luck

[fedora]

I was very sick as a child. I had all the same symptoms your daughter has. No one found anything wrong. Even now I am mad that they would send home a sick child and my mom gets defensive. It took me 15 years to figure out wheat was bad. It took me 22 years to finally figure out it was all gluten. Good luck. Healing can take a little while. But if it is gluten she will respond to the diet. You have covered all the other bases and know there is nothing else that showed up.

[bakingbarb]

I was very sick as a child. I had all the same symptoms your daughter has. No one found anything wrong. Even now I am mad that they would send home a sick child and my mom gets defensive. It took me 15 years to figure out wheat was bad. It took me 22 years to finally figure out it was all gluten. Good luck. Healing can take a little while. But if it is gluten she will respond to the diet. You have covered all the other bases and know there is nothing else that showed up.

Fedora, thank you for telling this. I know she isn't happy with her health but she is a very smart independent thinking young lady. I raised her to be that way. When she is on her game so to speak she is a very easy young lady to deal with and we make decisions about her life together. (she takes an antidepressant, if she doesn't we don't deal with each other at all!).

So I have talked to her about going gluten free and she is very reluctant to.

I bake gluten free all the time, she eats it and mostly likes it. I made gluten-free biscuits and she asked me to make more, so she is not opposed to eating my food.

There are some issues though and since you understand what she may be feeling I would like your opinion. She is mainly a vegetarian. Pasta is her favorite food. She will eat potatoes, rice, raw veggies, some cooked veggies, breads, bacon, tuna and anything I bake. NO sauces, and no meats other then what I listed. As a teenager she eats fries a lot. There are many days she lives off of bagels and french fries during the day including at school. When she comes home I have taught her well, she makes smoothies with a lot of fresh fruit, she eats a can of green beans or a can of tuna.

The biggest thing is pasta really. I don't think she will give up fries when she is out with her friends and we all know we can't trust fries hardly anywhere. She hasn't tried the gluten free pasta but I am not impressed with any I have tried so not sure what to do there. Suggestions?

[nora-n]

fjnt, I read on the alt.support.celac newsgroup ages ago that one always should ask to see the biopsy report, as some pathologists only diagnose celiac when all villi have gone. Also, I have read there that it si possible to get a second opinion on the slides. If the intrepithelial leucocytes are more than , I guess latest I read 20 per 100, this is likely celiac in some places, but not others. Some are more strict than others areading slides.

what about blood tests for celiac before being gluten-free too long? The antibodies might go negative quickly.

nora

[celiac-mommy]

She hasn't tried the gluten free pasta but I am not impressed with any I have tried so not sure what to do there. Suggestions?

We use the Tinkyada macaroni and fusilli (which is my favorite) and before Celiac disease (hard to remember sometimes!) we ate a lot of whole wheat pasta, so the best substitution I've found is the quinoa spaghetti noodles. The one thing I've learned is to only cook for 1/2 the time for any gluten-free noodle and then check-if not done, add 1 minute at a time until they're the consistancy you prefer. If you cook the full time, usually you will end up with mush and glue.

[fjnt]

What kind of blood tests should I ask for? Her follow up appt with the GI isn't until May 22. I did make an appt with an allergist for Thurs. He was the one that figured out our son had peanut and egg allergies at 9 months old. We saw great improvements after elliminating eggs (he had never had a peanut). And the ped had told me he didn't have allergies. His blood test had said that he didn't have allergies. Are blood tests really accurate? I'm starting not to trust them. And the drs seem to think they are the gospel and can never be wrong.

I do hope my daughter is not gluten sensitive, but if she is, I'm sure glad to have you guys around!! Thank you

[fedora]

Bakingbarb,

Hi, I understand your dilemmas. My daughter is 7, but is also a independent thinker. We have been talking about her and her twin brother going gluten free. Her blood test for tTg came back negative. I was frustrated they didn't even check anti-gliadin or anti-ema. Until she has proof she says she doesn't want to go gluten free. At home it is no problem, I can control what she eats, but away from home....I just ordered the enterolab stool test for her. I understand she needs proof.

My daughter is already having mood issues. I know because I started having them at 9. You said she is on a antidepressant. How old is she? I haven't been on one since I was 18, but then I just self medicated til I had kids. This winter I was in a really bad place and was about to get on one if things didn't get better. I went gluten free and feel so much more stable(except when glutened). I don't know if it would help, but maybe she could read on here from people who had mood issues. I look at this as the biggest tragedy of my being gluten intolerant...it made me enjoy my life and kids less than I would have.

I was a total vegetarian for many years. I started eating poultry and fish in public when I gave up wheat. I am taking nutrition now. Does your daughter drink fortified milk or soymilk? Vitamin B12 only comes from animal products. If her B12 or iron intake is low, I would recommend for your daughter floravital. It is a liquid iron and vitamin B supplement. It comes in a gluten free and non gluten free version. My hubby has been a vegetarian his entire life and has great iron(beans). I am slightly anemic and have been on and off since a teenager(probably from gluten damage)

I also use a gluten free fortified nutritional yeast for B vitamins. Calcium is very important now for her since she will reach peak bone mass at 20. The right veggies have calcuim too. . We eat tinkyada pasta too. It is yummy. Have you tried it? I also like corn spaghetti. I agree on watching the cooking time. I overcooked some and ended up with mush. I ate it though. You two could actively search for replacements to the bagels and fries. I carry food wherever I go know.

As a teenager my health improved a lot. I was still moody, tired, digestive issues every now and then, and joint pain rarely.(teenage remission?) I don't know what I would have thought if someone said to give up gluten. At 19 I started itching all over from the inside out. It was horrible. It went on for a month and I thought I would go insane. My chiropractor said to give up wheat. I did and the itching vanished. Stupidly I started eating it again, but then gave it up at 26.

I would suggest to just not give up. Let her know you are there for her and you are willing to do whatever to figure out what is going on. going gluten free can be done in steps. My parents had never heard of celiac or gluten intolerance. They have been totally supportive of my diet, but back then it was not even an option to consider.

I don't know if this helped...I rambled alot I think. Good luck,

[bakingbarb]

Fedora, thank you for telling this. I know she isn't happy with her health but she is a very smart independent thinking young lady. I raised her to be that way. When she is on her game so to speak she is a very easy young lady to deal with and we make decisions about her life together. (she takes an antidepressant, if she doesn't we don't deal with each other at all!).

So I have talked to her about going gluten free and she is very reluctant to.

I bake gluten free all the time, she eats it and mostly likes it. I made gluten-free biscuits and she asked me to make more, so she is not opposed to eating my food.

There are some issues though and since you understand what she may be feeling I would like your opinion. She is mainly a vegetarian. Pasta is her favorite food. She will eat potatoes, rice, raw veggies, some cooked veggies, breads, bacon, tuna and anything I bake. NO sauces, and no meats other then what I listed. As a teenager she eats fries a lot. There are many days she lives off of bagels and french fries during the day including at school. When she comes home I have taught her well, she makes smoothies with a lot of fresh fruit, she eats a can of green beans or a can of tuna.

The biggest thing is pasta really. I don't think she will give up fries when she is out with her friends and we all know we can't trust fries hardly anywhere. She hasn't tried the gluten free pasta but I am not impressed with any I have tried so not sure what to do there. Suggestions?

I got my threads mixed up but I still mean everything I said!

[bakingbarb]

Bakingbarb,

Hi, I understand your dilemmas. My daughter is 7, but is also a independent thinker. We have been talking about her and her twin brother going gluten free. Her blood test for tTg came back negative. I was frustrated they didn't even check anti-gliadin or anti-ema. Until she has proof she says she doesn't want to go gluten free. At home it is no problem, I can control what she eats, but away from home....I just ordered the enterolab stool test for her. I understand she needs proof.

My daughter is already having mood issues. I know because I started having them at 9. You said she is on a antidepressant. How old is she? I haven't been on one since I was 18, but then I just self medicated til I had kids. This winter I was in a really bad place and was about to get on one if things didn't get better. I went gluten free and feel so much more stable(except when glutened). I don't know if it would help, but maybe she could read on here from people who had mood issues. I look at this as the biggest tragedy of my being gluten intolerant...it made me enjoy my life and kids less than I would have.

I was a total vegetarian for many years. I started eating poultry and fish in public when I gave up wheat. I am taking nutrition now. Does your daughter drink fortified milk or soymilk? Vitamin B12 only comes from animal products. If her B12 or iron intake is low, I would recommend for your daughter floravital. It is a liquid iron and vitamin B supplement. It comes in a gluten free and non gluten free version. My hubby has been a vegetarian his entire life and has great iron(beans). I am slightly anemic and have been on and off since a teenager(probably from gluten damage)

I also use a gluten free fortified nutritional yeast for B vitamins. Calcium is very important now for her since she will reach peak bone mass at 20. The right veggies have calcuim too. . We eat tinkyada pasta too. It is yummy. Have you tried it? I also like corn spaghetti. I agree on watching the cooking time. I overcooked some and ended up with mush. I ate it though. You two could actively search for replacements to the bagels and fries. I carry food wherever I go know.

As a teenager my health improved a lot. I was still moody, tired, digestive issues every now and then, and joint pain rarely.(teenage remission?) I don't know what I would have thought if someone said to give up gluten. At 19 I started itching all over from the inside out. It was horrible. It went on for a month and I thought I would go insane. My chiropractor said to give up wheat. I did and the itching vanished. Stupidly I started eating it again, but then gave it up at 26.

I would suggest to just not give up. Let her know you are there for her and you are willing to do whatever to figure out what is going on. going gluten free can be done in steps. My parents had never heard of celiac or gluten intolerance. They have been totally supportive of my diet, but back then it was not even an option to consider.

I don't know if this helped...I rambled alot I think. Good luck,

This helped so much and thank you for rambling, I do it too!

I was thinking about the enterolab for her. Proof would probably do it for her. I think I could change what she eats at home greatly if I can get her to try and eat the pasta. It is what she eats all the time, daily if not twice a day.

She had blood tests done when she was 7 because she was sick all the time and her liver panel came back high. She had broke out in a rash then too. The Dr. had us keep coming back for blood work even though the test came back high every time and HE HAD NO IDEA what was wrong.

She is now 15, almost 16. She has been on the antidepressant off and on since she was 10. I too have been on one for years (we were in a very bad situation for a very long time also). We both tried to be off of it when situations changed and I have been off of it since going gluten free but neither one of us function without it.

She takes an easily abosorbed iron and a natural multi. She does drink milk and uses it for her smoothies. We always have frozen fruit for smoothies or she uses canned peaches. Sometimes she will eat yogurt. I tried to buy supplements that say gluten free, thankfully they actually say that on them.

As a teen I had headaches daily, a common meal for me then was a sandwich or a granola bar or bread I made (I was baking as soon as my mom would let me!). I know I was gluten intolerant since being little.

I am sure my Dad is, he has some unknown autoimmune illness. Joint pain and weakness, rashes, stomach pain, headache and the BIG D all the time. He gave up coffee and ketchup years ago because he thought they were hurting his stomach.

When you say you carry food with you, can you give me an example of what. I need to do this but I don't know what to take with me. There have been so many times we have been out and I didn't have anything to eat and was soooo hungry.

Thanks for letting me ramble on too.

[nora-n]

......

I am sure my Dad is, he has some unknown autoimmune illness. Joint pain and weakness, rashes, stomach pain, headache and the BIG D all the time. He gave up coffee and ketchup years ago because he thought they were hurting his stomach.

-----

Really sounds like celiac, the joint pains and big D are very typical for celiac, together with the weakness and stomach pain and headache.

Dd had stomach pain daily for years.

In the old days, they said celiacs must have floating stools so I never got the connection with her. Also, doctors told me acouple of times stomach pains in kids always were nervousness so she never got any appointments for further examinations....she got a celiac diagnosis just a few years ago in her 20's.

nora

[fedora]

Hey BBarb,

I have a a bag I pack with food. I bring lots of fruit-apples, oranges, bannanas, dried apricots, raisons. Also easy veggies-celery, carrotts. sometimes I bring a little container with peanut butter with presliced celery or apples. I can alot of food, so I bring applesauce or canned pears, juice. I sometimes have a gluten free tofu dog. I do try to have a mix of fruits, veggies, and protein. It helps a lot. I eat more than I did when I ate gluten, but have lost 5 pounds. I am really focusing on balance. I am going to get a can opener to leave in the car too so if I have to I can buy a can of tuna or salmon to eat with some rice crackers. I had to give up dairy after going gluten free. My stool test showed casein intolerance. When I challenged it by eating it, I obviously am casein intolerant. I am not eating out at all now because I had a few terrible weeks her lately that I think were from being gluttened(but not sure).

It does sound like your dad could potentially have gluten intolerance too. My dad and his mom both have had very serious symptoms that indicate gluten intolerance also.

fjnt-

There are 4 blood tests recommended for celiac testing:

anti-gliadin antibodies IgA and IgG

anti-transglutaminase(tTg) IgA antibodies

anti-EMA IgA antibodies

total IgA levels to check for IgA antibodie deficiency. If she is deficient then all tests should be checked with IgG antibodies

It is important to make sure that all tests are being run. The PA said that they were with my daughter, but then didn't double check that the test she ordered did have all four. The lab only ran two. Her tTg came back negative so they sent me on my way. Her PA was sure she didn't have celiac. The anti-gliadin would have told me if she was having a reaction to gluten. The tests can have false negatives though. she had blood allergy tests too that all came back negative. But I know something is going on with her. good luck