rgeelan

Hmmmmm.... That is interesting... For about 2 years now I have had chroinc sinus infections. I have been on mega antibiotics and nothing every helps I have just had to live with it! I never thought sinus problems could b a sign of celiac though... I wonder if this will improve when I am on the diet for a while?

Ursula... They didn't have damage to their intestines, but they did have lukeocytes in their intestines which the GI said is a sign of intollerance and could be the first sign of celiac for them... However we have put them on the gluten-free diet in the past but it hasn't changed their symptoms which is why the GI said to wait till their next scope. Part of their problems improved when we figured out the lactose/dairy issues. But I am honestly suspecting that the lactose and dairy problems could just be early symptoms of celiac...

I saw my Dr this morning and went over all of it with her and she seriously thinks I need to go gluten-free from this point on. The part of my thyroid that was low is now normal however my total thyroid is shutting down so she said upping the medicine would be bad and probably not help with how I am feeling anyway! She wants to see me back in a month and is hopefull that after a full month of being gluten-free that more than just my energy level will have improved!

Last night I cheated since I already felt sick and we went to Olive Garden... I ate all my pasta and have felt horrible ever since then. I am totally nausiated and keep getting stomach cramps and my energy is plumited today! So again this morning I started back on the gluten-free diet in desperate hope that I will start to feel better again in a few days.

I talked to my insurance about the Entrolab tests and was told that they would not be covered and I probaly wouldn't even get a partial reimbursement for them... I still am strongly considering doing them, but have to find the money for them which is kind of non existant right now... I am considering asking my mom if I can borrow the money from her, but I don't want to put her in a bad place financially either... I just think it would be good to have some testing done also. My husband said we should probably have all of us tested, but that's 5 people at $369 each and we really can't afford that. lol!

Thank you for all your advice and concern. I think our house is going gluten-free from this point on....

I have a lot of gluten-free 'snack' foods for my kids but just am being stubborn about giving up MY foods. lol! I think unfortunatly it is going to come down to our entire house being gluten-free eventually. My girls GI wants me to wait till after their next biopsy to put them gluten-free. Their first biopsy showed some possibility of food intollerance though so she said it could be an early sign of celiac for them... My DH may not be happy if I stop buying any gluten foods but I think he will survive and it will be easier for us to stay gluten-free. I know I had to pack all the gluten snack foods in a plastic tote and put it in the garage just to remove the temptation for me. lol! It did make it easier without them around though.

I was looking at the Enterolab site... I will have to ask my Dr if she knows anything about them and if our insurance would reimburse for it. It might be worth doing it on all of us if they would but we just don't have that kind of money if it all had to come out of pocket...

Thanks Angie... We normally try to be very careful and even the girls that work at the bowling alley are helpful and careful when preparing our food. I have read all the packaging and they let me know if any of their products change or anything like that. They get the hotdogs strait from the back and wrap them in a paper towel and microwave them, so they have never been near the hotdog thing with the bun tray in it... They always make us fresh fries without any other food fried with them also. But the fries are still in a common oil so I wonder if they could pick something up. That has been the only iffy thing that I could think of but he never mentioned that they made him feel sick *till I asked directly!* so I thought they were ok... Now I am thinking I may have found the reason to his last totally random and unexplainable attack... No more fries for us...

I did eat fairly gluten free before going on the diet because I cook our main meals gluten-free, but I still would have some sort of gluten food daily till this diet. I wonder if that could have been just enough to keep my blood from testing positive though? I have had to give up my snack foods and treats and it has been a little hard to change my eating after 28 years, but I was feeling so good till today that it kept motivating me to keep up the diet! Today I am feeling horrible and I don't have the energy or desire to cook. I'm almost tempted to just eat a ton of gluten at dinner time and see if it really makes me sick. Not that I want to feel any worse, but I just want to make sure it isn't all a coincidence, you know??? I hate the thought of having to give it all up, but at the same time if there is a chance I have celiac I don't want to risk the damage it can cause just to be able to grab a quick easy snack when I want one... Unfortunatly I think without a positive medical diagnosis our dr and insurance won't consider it a posibility... I know it was a PITA getting it 'official' for my DS even though his first blood test was highly positive and the Dr really had no doubt, he had to have the biopsy and a repeat blood test for insurance and his medical file...

That list looks almost exactly like my symptoms and I am so sick of feeling this way! I know there are many possible reasons for these symptoms but it never hurts to rule out Celiac as one of them... I am unsure what the celiac panel being low means. With my son's diagnosis his levels were high...

Have you considered asking to have a biopsy done?

Good luck...

Ok for almost a year now my health has been going down hill. I have been getting more and more tired and forgetfull and my stomach is often upset. I had a Hystorectomy in August and since then have gotten severly worse. They thought I was anemic at first, but they tested and I was fine, they suspected my Thyroid was too low by the tests though so they put me on medication which hasn't really taken away the majority of my symptoms.

Anyway long story short... My son has Celiac and was diagnosed 2 1/2 years ago. We know either myself or my husband is a carrier and could develope it but I have been tested in the past *by blood* and was negative. With feeling so bad and not getting answers from my dr's I started looking into it and was reading that it could cause all the symptoms I am having even the Thyroid problems. So a week ago I got sick of getting the run around from my Dr's and put myself on a Gluten Free diet to try it out. Within 24 hours I had tons of energy that I didn't normally have! As the days have gone on my energy has increased. I am still tired as I am not sleeping well at night, but I have lots of energy and am getting things done around the house now... I am still forgetful, but my stomach problems started to improve after a few days... I don't really know if this is coincidence or the diet though, but I figured I would keep it up another week or so then challenge and see what happened.

Then yesterday we went to Bowling and ate at the bowling alley! My son has been eating there for a year and never actually complained that it caused him any problems so I just ordered what I always get him. By the middle of the 2nd game I was feeling sick and nausiated. All today my stomach has been very upset and I have felt nausiated. I don't have the energy level today and am just irritable and feeling horrible!

I am wondering if I could have been glutened by cross contamination at the bowling ally and that is what caused me to feel this bad? I am not sure if I would have a reaction like this after only 1 week on the gluten-free diet though. I did ask my son if his stomach ever hurts after eating there and he said yes, and I asked if he noticed that any food caused it and he said the french fries and sometimes the chips *nachos*. Well the fries are fried in a common oil so there is a chance of cross contamination but since he had never mentioned this on his own I never thought it was a problem. Now I am thinking it might be!!!

Am I totally parinoid or could I be onto something here? I have an appointment with my Dr tomorrow morning and was thinking of bringing this up and asking about being retested for Celiac because of these symptoms and how after 1 week on a gluten-free diet I started feeling better... But I don't want to come across as totally crazy. I'm just sick of being sick and desperatly want an answer!

Any advice would be greatly appreciated. Thank you!

Rebecca

The problem with that theory is that an intolerance could be an early sign of celiac, before sufficient damage has been done to the intestines to show up as "celiac".  So cheating, even if it's "just an intolerance" at this point, could lead to larger problems in the future.  Perhaps keep her gluten-free until after the move, and then try the challenge later?

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Ok that is a point I had not thought about till just now. I think keeping her gluten-free is just the best idea anyway. Really I see the difference when we take it out of her diet so I know it has some sort of effect... My DH refuses to believe me though!

My son is 2 yr 2 months as well and at 26 months he tested negative for the Celiac Panel but had positive genetic testing. The pediatric GI Dr. said the only way to know is to repeat the panel after 2 months on gluten. No way, this is the first formed stools he has ever had. I dont need anymore testing. the positive dietary response is enough for us. I cant ever imagine putting him through having gluten again. He was sick, pale and malnourished. Thank God I have an answer now and I decided not to have the biopsy or any further bloodwork. Good Luck and you should be commended for your quick response and help youve given your child, some moms miss this and alot of kids arent diagnosed or helped for many years. At least our toddlers are getting help early. Kuddos to you!!

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Thanks. See I figured age may still have a play in the testing but knowing that they did the wrong test makes me a little mad. I had to put her back on Gluten for them to do the wrong test! I really think for now at least I will not retest her. I see the change and that is enough for me...

Kind of along the same lines as why I will not be introducing gluten foods to our baby either. She seemed bothered by it when I would eat too many gluten foods so why even take the chance... She has a severe dairy allergy though so we are being really cautious and going through an allergist to start her on solids for fear of any major reactions.

kaiti she was tested at 25 mo, so over 2 yes but not by much. lol

How old is your daughter?

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She is 2 years 2 months... Ugh that much gluten would be hard because she does not like bread and wont even eat regular cereal! That would mean lots of cookies and crackers. lol... And 3 months before testing would put us in the middle of moving which would mean another month or more after we get to our next base to get the Ped there to realize they need to order the test! Just not going to be 'easy' any way I look at it...

See I would like to have some sort of official diagnosis largly so we know if she can occasionally cheat (if it is just an intollerance) or if she has to be as strict as my DS. She does not have the severe immediate reaction he has, but then again he didn't have it when he was her age either! Now he can lick a cookie and will throw up, she has to eat gluten foods for a few days before the diarhea comes back. I think this might just be because if she does have Celiac it hasn't progressed as far yet with her being younger. But it would be nice to know if she can have a piece of cake at a birthday party when she is older and that she won't have any major damage, or if she needs me to send a cupcake like I do for William.

It would also help keep my DH and our familes from feeding her gluten containing foods just because 'she doesn't have an official diagnosis'... My DH thinks that since she came back neg to everything that she can eat whatever she wants. Of course he isn't the one constantly changing the diarrhea diapers and spending all day with her moaning and crying that her tummy aches either!

I just don't know if it is worth the pain to have her with diarrhea and constantly complaining that her tummy hurts so we can go through a needle poke and blood drain again. But they did RAST tests at the same time to rule out possible food allergies and those all came back neg also! She has an obvious reaction to something she is eating though I just have to figure out what it is! I'm pretty sure on the gluten though because if I take it out of her diet the diarrhea goes away, put it back and it comes back! She has mucus in her stool even on a gluten-free diet though which makes me think there is more in play.

Ok when my son was diagnosed with celiac disease a year ago it was the TTG IgA that came back pos at 40 (a very strong pos) The IgG were neg though. The specialist we saw for the biopsy said with just the blood tests alone he was 99% positive William had Celiac because the one he was pos to was the most accurate for it. Well we had our DD tested at the start of this month because she has similar symptoms and the doctors only ran the IgG! This came back neg but I am wondering if this is the same situation as my DS where the IgA may have shown a pos if they had ran it.

Is it worth the pain for my DD to put her back on Gluten and have her blood drawn again for the IgA test to see if it is pos? She does improve on a gluten-free diet this makes me really suspect that she is following in our DS's footsteps...

With my older 2, once I got them completely gluten-free they had no problem learning to potty train. William was fully potty trained day and night shortly after diagnosed with celiac disease at 3 yr 3 mo. He was mostly potty trained except for the diarrhea we couldn't figure out (DUH) way before he was 3 though! Emma is 2 years and is potty training right now. She has - blood results but reacts + to a gluten-free diet... Once the gluten was out she started wanting to potty train cause she knew in advance and could control it better...

Seriously I would look at her growth chart and see if she is on the same curve as always or if she has dropped. It wasn't until my son stopped growing and lost weigh that his doctors took me seriously about him being sick and finally ran tests. He was always 90% or above in height and weight and had dropped to 90% in height but 75% in weight just after age 3. My daughter on the other hand has never seen much over 50% in height or over 25% in weight! She has had some major dips though and we are now suspecting she may be Celiac as well and her Dairy issues probably were never outgrown... We are going to have her tested 9/1 to confirm our suspicions.

Yes parental height can have something to do with a childs height but it isn't always after the parents. I am 5'9" and my DH is 6'6" We figure that is why William has always been so tall and expect he will be about the same height as DH as an adult. Emma on the other hand is very petite and we figure she takes after out grandparents who are all no taller than 5'5" (with the exception of my maternal grandfather who was 6'2"). Genetics can go back 6 generations...

Good luck!

generally the tests are inconclusive before age 2 and could easily give a false -. i would have her retested.

we also had our daughter tested at 15 months and it was -, but by 21 months she was really showing the signs our son had started with and i recently challenged her and got + results from removing gluten (and dairy but that is a seperate issue), so we contacted her doctor and reintroduced gluten and in another 1.5 weeks we are having her retested and i expect they will probably show + now... It's unfortunate to say I think she has it also, but the symptoms are just like William's at this age and I would rather know now before she get's as sick as he did....

Our son is 4 now and he has learned the hard way that he does not want to cheat on his diet!! He proudly announces to anyone who offers him food that he can't have wheat! He learned the hard way what cheating does to him and at a bad time. The night my water broke with Sarah (I was 33 weeks) we had the neighbors watch the kids for us while my DH and I went to the hospital. Well they gave Emma a cookie to calm her when daddy and mommy left and Emma had left 1/2 the cookie in Williams room and at some point he found it and ate it! Don't know why, he just did! Within a few hours he was throwing up and mommy and daddy were both at the hospital so he only had our neighbor to comfort him... Ask him now if he wants something with gluten in it and he will tell you no because it makes him sick and he doesn't like to be sick!

Thanks... I actually found that board a few days ago. A lot of good information there!

Currently we are going to stick with the Nutramagin. They tested the mucus that is still in Sarah's poop and it no longer has blood in it. We are thinking maybe the mucus is caused by what is left in her system and hoping it will go away in another week or so. Since she is tollerating the formula much beter than she was when I was Breastfeeding though we are going to stick with it for now. The ped GI said that at this point if the blood is gone it isn't causing her harm so it's just our personal preference if we want to try the Neocate and see if that get's rid of the reflux also. Obviously if the blood comes back though we will be going to Neocate or Elecare without a 2nd thought. The reflux she still has going on though could just be plain old reflux and may not go away even with a completely non dairy/soy formula.

Thanks laurie. That is what our doctor is suspecting also... I know Emma would get sick if I had even the tinest bit of hidden dairy when she was nursing she was very allergic. We're suspecting Sarah may be the same way and it just took a few days for her body to recognize that the dairy is still there even though it is highly processed.. I am waiting on a call back from the ped today to find out what to do. I run out of nutramagin today and have to go to the store for other stuff anyway but am not sure if I should buy more or not. I hate to spend the money if she isn't going to be kept on it...

I'm glad to know I am not alone. I had never heard of anyone else reacting like I did either. I tried to eat as many calories as I could on that diet but it didn't seem to matter. I just know I can't do that again. So far it seems that Sarah is not tollerating Nutramagin either. She started out doing great then at 4pm yesterday we started taking steps backwords again. She is spitting up and crying and arching like in pain again. It comes and it goes but she has stopped wanting to eat much now and only seems to be taking enough to keep her from starving. She should take in 29oz a day minimum to keep her weight up and she only took 23.5 yesterday and the last 6 I had to force feed her last night. Today she has taken only 22 oz. and probably half of that wound up being spit back up... She acts like she is starving but it takes an hour to feed her because she is not wanting to really eat and then half what she takes comes back up and she thinks she is starved again. I have a call in with the ped. I told her what is happening and she is going to call the GI docs in Denver to see what we can do. I hate to have to scope Sarah because it means putting her under and I am scared to death to do that to a 3 month old baby. But we have tried everything short of putting her on an elemental formula like Elecare or Neocate so far and the thought of having to put her on one of those just ties my stomache in knots. It would cost about $400 a month to feed her (at the amount she eats now) and all I know is that there is no 'easy' way to get insurance to help with that. So it comes down to a choice, my health, her's, or find a way to pay for her to have the nutrition she needs to survive without burying ourselves in debt.... She is so sick from something but we aren't even 100% sure it's Dairy! She seemed to react to both Dairy and Gluten, but there is no gluten in Nutramagin that I can tell. As far as our ped knows there is no way to really accuratly test a 3 month old baby besides elimination diets so where would I start? I just feel like I am running into a brick wall repeatedly right now. We thought we had our answer with Nutramagin because the first few days went great, but now she is almost back to square one...

Sorry about that last post just got onto DSL and it went to fast

My 6 month old is breastfeed and i had been wondering if he could be having some reactions we tried rice ceral and he cried after and seemed to have a stomach ache ( my Pedi suggested beech nut because it comes from a country that does not rotate crops it still seemed to upset his tummy so we went right to veggies hes doing fine but now i noticed with those zibeck (sp) cookies he seems to get a tummy ache again coienidence? (my sp is awful tonight) or could there be something there?

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Allergies show as soon as enough protien has built up in their system to cause a reaction. Emma was severly allergic to Dairy by the time she was 2 months. Sarah started showing signs before 2 months but we thought it was reflux caused by prematurity and I kept ignoring that it could be an allergy till now.. If you eat enough of a food that your child is allergic to, the protiens can pass through your breastmilk and eventually cause a reaction in the baby.

The only way to know for sure in a child that young is to test them by going without the food for a few weeks (generally it takes about 2 weeks to get out of the system) and then reintroduce and watch for a reaction. Allergy tests are very unreliable until about 18 months...

I don't understand something, why do you get sick going 100% dairy free.  We've been dairy and soya free for years with no problems.

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I don't know why I got so sick. I was 100% dairy and all major soy free, I also had to limit my egg and wheat cause Emma would react if I had to much of either of those. The first month I felt great! I lost a little weight but since I was still about 175 (25 pounds over my ideal weight for height/age) I didn't worry. After a few months I was started to catch everything and anything and be sick all the time, just cold after cold after cold. I couldn't fight off anything. I also wound up 15 pounds underweight by the time I got off the dairy/soy free diet but I had been eating ALL the time just to try to keep from loosing. I haven't been 100% healthy since then. I took multivitamins and calcium the whole time I wasn on the diet to make sure I got enough and I still take them now and even with them my calcium levels are very low. I do know that I did not have Dairy till I was 2 because I was sensitive to it as a baby and my family challenged me when I was 6 and had me go Dairy free for a while and I got sick at that time also.

I have quite a few of the 'common misdiagnosis' but when I had myself tested it was negative. My DH has no symptoms so he refuses to be tested. I realize that one of us at least carries the gene but we don't really know who...

I guess it's all denial for me at this point. I should have seen the signs earlier and challenged Emma's diet. But I didn't want to think that 2 of my kids could have Celiac when it is hard enough for the 1 already diagnosed. Part of me is still hoping it comes back as just an allergy but I know how much that Gluten challenge really means and her responding so quickly and positivly to it really makes me suspect she will be diagnosed with Celiac also.

Thanks for listening. I will update when we find out what the tests say...

Well switching Sarah to nutramagin has made a world of difference. She really is a totally different baby now. So we at least know the Dairy is an issue for sure. She seemed to be reacting to wheat when I ate it but I won't be able to test that till she is a few months older and we start solids. I guess at that point we will see a reaction for sure if she has an allergy to gluten also and until then I shouldn't let it stress me out. I figure at this point I probably will not continue to breast feed. Don't get me wrong... I do firmly believe that breastmilk is best for a child... But I know I can't go 100% dairy free again because of how sick I was before, so it is safer for her to be on formula at this point...

We do the lil critters gummy vites. The bears and the worms are both gluten-free and our kids love them! I get them at Walmart!

Emma, our 2 year old, has had allergies her whole life. As a baby she had severe MSPI (dairy and soy allergy) and I went dairy and soy free for a year because she wouldn't take a bottle. Well her symptoms that clued us in on that was diarrhea with mucus and blood in it. We reintroduced dairy at 13 months and she has had ups and downs but always bounced back fairly quick. At about 21 months she started having lots of diarrhea again. I dont' even know if you could go as far as to call it diarrhea or just pretty much liquid poop when it happens. I know it's not from fruit or juice because I have learned what over abundance of that does in the past and always make sure to balance her out. Well a few days ago I decided to test out Gluten since William (our 4 year old) has celiac disease and his first symptom was diarrhea all the time. So yesterday I went to change Emma's diaper and her poop is firming up now. I figured it had to be either Dairy or Gluten with her. The thing is that she didn't have as much milk the day before as she normally does so I am not 100% sure if it is because she had been totally gluten-free for over 36 hours at the time, or if it was because her milk intake was cut back. So yesterday I loaded her with milk to drink and am waiting to see what happens today. I figure I should give it a few days and see how things react and if the gluten-free seems to cure things I am going to have her doctors run the Celiac tests again (and possibly allergy test at the same time to make sure it isn't just an allergy).

At the same time I have been doing this though we put our baby, Sarah, on Nutramagin because she seemed to be reacting to both Dairy and Wheat when I would eat them. Yesterday she was a different baby, after just 24 hours on Nutramagin we saw a change. We are going to continue to make sure she doesn't have to go a step further to specialized formula with absolutly no dairy, but we can already see the improvement in her. The peds won't allergy test because of her age and how inconclusive it is at this young of an age. But taking out Dairy and Gluten made a difference for her so far also.

What would the odds be of all 3 of our children reacting to Gluten but my DH and I don't!!! I am hoping this doesn't mean that all 3 of them will have Celiac Disease. It is so hard on our son being 'different' but at least he was old enough when he was diagnosed to understand what was making him sick. I dont even know how I would begin to explain it to Emma yet.

I wrote a detailed letter to his school explaining the disease and what it does and what he can and can not have. I even offered to loan my copy of Raising your Celiac Kids to my son's teachers. They didn't take me up on reading it but never hesitate to ask before giving him anything I didn't provide.