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6 Year Old With Some Celiac Symptoms


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#1 bobbijo

 
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Posted 15 August 2011 - 11:58 AM

Hi all! I'm new here, but come here often to read up on things that I'm dealing with also. I'll try to make this as short as possible....

Back in 2005 I gave birth to a gorgeous little girl with red hair and blue eyes. She was as sweet as could be, but she was screaming her head off throughout most of the few days in the hospital. After we got home it continued and she was eventually diagnosed as being colicky. However, there were things that I had noticed with my diet and her behavior. Anytime I ate wheat OR dairy she would be even more colicky. It was very obvious to me, but the doctor didn't seem to be too worried about it (at that time we didn't have any food allergies in our family that we knew of) She was very low in weight and was losing weight and we had to go into the lactaction consultant to get help. They said she was the perfect nurser and did everything right....she litterally shocked the lactation consultants and the nurses we saw. However, my milk supply seemed to be too low (although now I wonder if that was really the case) I litterally had to nurse 24/7 with her for awhile. She was super colicky anyway, and I felt that if I didn't nurse her a lot she would just scream and I needed some peace. However, she kept us up every night from 5 pm to 4 am crying non-stop. This went on for three months. Our daughter also reacted negatively to formulas when we introduced them. Similac she did okay on, but she was still a fussy baby, but when we tried enfamil she would be screaming her head off uncontrollably like she was in pain. I learned pretty early on that we would stick with similac. I have no idea what the difference between those two formulas were, but it obviously had something in it that bothered her. The doctor at the time didn't suggest to switch formulas and I didn't bother pushing the issue since I felt the wheat and dairy question was kind of ignored. (although I love the doctor dearly and I think she did the best that she knew how to do) Anyway, she eventually seemed to outgrow whatever it was that was bothering her, but she always stayed on the low end of the weight gain. Usually in the 10-15%. Her doctor said she was growing steadily and she was healthy though and not to worry. She was a very smart kid though and would challenge us throughout the years...outsmarting kids who were 18 months older than her. She was CRAZY! Eventually, when she turned three she started to have massive explosive tantrums. She only had tantrums at home, but they were very violent and we had to hold her in our lap to keep her from hurting us or herself. Eventually, she started school and did fine at school, but she would wake up throwing a massive fit and she would come home from school throwing a massive fit...as well as usually throwing a fit when it was bedtime. It was extremely frustrating, but I tried not to look too much into it. We also noticed that certain food dyes would trigger her to act up as well as certain junk foods like doughnuts (she had major fits after eating this). We soon backed off of eating food dyes and rarely ate doughnuts anyway so it wasn't that big of a deal. We decided to go all organic and have been eating that way for almost two years. We did see some change in her hyperactivity after this. She can be a very hyper kid, but at the same time she gets hyper when she's tired. Anyway, around 5 and 1/2 she started to have tummy aches and acid reflux. It was every once and awhile, but I decided to keep a food journal of it. Thank God I did, because a few short weeks later her acid reflux was so bad and so intense that I was really getting worried. She had it usually after eating dairy, but not just dairy. Occasionally, she would get it from other foods too. Her doctor listened to my concerns and decided to run some blood tests on her. She did a bunch of tests....one included the celiac test (which we recently found out runs in the family and my MIL has it) Everything came back "stone cold normal" according to her doctor and her doctor had told me before the testing was done that it's a very accurate test. So I was left with even more questions. Our daughter was put on prevacid for a few months and the doctor said if she continues having acid reflux after she's been on it, she would probably send her to a GI specialist. Well, sure enough a few weeks after stopping the medicine she started to have acid reflux again. It was usually after eating dairy though...so I called her doctor up and her doctor decided that we should take dairy out of her diet for 5 months and put her back on meds for 6 months. She also said that if her reflux starts back up again after she gets off meds that we should take dairy out again and if it continues after that she will for sure send us to a GI specialist just to make sure we're not missing anything or the doctor isn't doing anything wrong. I think at this point the doctor is unsure of what to think, but she is trying to help us figure this out. I don't want to keep her on gluten, but I feel that we need a diagnosis to take it as seriously as we need to if it is celiac. Anyway, I'm really frustrated and confused. I'm wondering if any parents have had a negative blood test, but a positive biopsy. I'm also wondering if any of their symptoms have been similar to our daughters. One thing I forgot to mention (and I told the doctor this too) was that she does occasionally have floating poops that are pretty large. It's not every time she poops, but maybe a few times a week. Lately she has had a lot more gas too. So, she's showing symptoms, but the tests aren't showing anything. My MIL had no symptoms until she was 50 and she started to have post nasel drip and acid reflux. I wonder though if it runs on my side too, because we have lymphoma on my side. From what I've read that can be linked to celiac somehow? Anyway, any thoughts or advice would be appreciated. Sorry that it's so long. LOL I just have to tell the whole story.
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#2 pain*in*my*gut

 
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Posted 15 August 2011 - 12:44 PM

Hi all! I'm new here, but come here often to read up on things that I'm dealing with also. I'll try to make this as short as possible....

Back in 2005 I gave birth to a gorgeous little girl with red hair and blue eyes. She was as sweet as could be, but she was screaming her head off throughout most of the few days in the hospital. After we got home it continued and she was eventually diagnosed as being colicky. However, there were things that I had noticed with my diet and her behavior. Anytime I ate wheat OR dairy she would be even more colicky. It was very obvious to me, but the doctor didn't seem to be too worried about it (at that time we didn't have any food allergies in our family that we knew of) She was very low in weight and was losing weight and we had to go into the lactaction consultant to get help. They said she was the perfect nurser and did everything right....she litterally shocked the lactation consultants and the nurses we saw. However, my milk supply seemed to be too low (although now I wonder if that was really the case) I litterally had to nurse 24/7 with her for awhile. She was super colicky anyway, and I felt that if I didn't nurse her a lot she would just scream and I needed some peace. However, she kept us up every night from 5 pm to 4 am crying non-stop. This went on for three months. Our daughter also reacted negatively to formulas when we introduced them. Similac she did okay on, but she was still a fussy baby, but when we tried enfamil she would be screaming her head off uncontrollably like she was in pain. I learned pretty early on that we would stick with similac. I have no idea what the difference between those two formulas were, but it obviously had something in it that bothered her. The doctor at the time didn't suggest to switch formulas and I didn't bother pushing the issue since I felt the wheat and dairy question was kind of ignored. (although I love the doctor dearly and I think she did the best that she knew how to do) Anyway, she eventually seemed to outgrow whatever it was that was bothering her, but she always stayed on the low end of the weight gain. Usually in the 10-15%. Her doctor said she was growing steadily and she was healthy though and not to worry. She was a very smart kid though and would challenge us throughout the years...outsmarting kids who were 18 months older than her. She was CRAZY! Eventually, when she turned three she started to have massive explosive tantrums. She only had tantrums at home, but they were very violent and we had to hold her in our lap to keep her from hurting us or herself. Eventually, she started school and did fine at school, but she would wake up throwing a massive fit and she would come home from school throwing a massive fit...as well as usually throwing a fit when it was bedtime. It was extremely frustrating, but I tried not to look too much into it. We also noticed that certain food dyes would trigger her to act up as well as certain junk foods like doughnuts (she had major fits after eating this). We soon backed off of eating food dyes and rarely ate doughnuts anyway so it wasn't that big of a deal. We decided to go all organic and have been eating that way for almost two years. We did see some change in her hyperactivity after this. She can be a very hyper kid, but at the same time she gets hyper when she's tired. Anyway, around 5 and 1/2 she started to have tummy aches and acid reflux. It was every once and awhile, but I decided to keep a food journal of it. Thank God I did, because a few short weeks later her acid reflux was so bad and so intense that I was really getting worried. She had it usually after eating dairy, but not just dairy. Occasionally, she would get it from other foods too. Her doctor listened to my concerns and decided to run some blood tests on her. She did a bunch of tests....one included the celiac test (which we recently found out runs in the family and my MIL has it) Everything came back "stone cold normal" according to her doctor and her doctor had told me before the testing was done that it's a very accurate test. So I was left with even more questions. Our daughter was put on prevacid for a few months and the doctor said if she continues having acid reflux after she's been on it, she would probably send her to a GI specialist. Well, sure enough a few weeks after stopping the medicine she started to have acid reflux again. It was usually after eating dairy though...so I called her doctor up and her doctor decided that we should take dairy out of her diet for 5 months and put her back on meds for 6 months. She also said that if her reflux starts back up again after she gets off meds that we should take dairy out again and if it continues after that she will for sure send us to a GI specialist just to make sure we're not missing anything or the doctor isn't doing anything wrong. I think at this point the doctor is unsure of what to think, but she is trying to help us figure this out. I don't want to keep her on gluten, but I feel that we need a diagnosis to take it as seriously as we need to if it is celiac. Anyway, I'm really frustrated and confused. I'm wondering if any parents have had a negative blood test, but a positive biopsy. I'm also wondering if any of their symptoms have been similar to our daughters. One thing I forgot to mention (and I told the doctor this too) was that she does occasionally have floating poops that are pretty large. It's not every time she poops, but maybe a few times a week. Lately she has had a lot more gas too. So, she's showing symptoms, but the tests aren't showing anything. My MIL had no symptoms until she was 50 and she started to have post nasel drip and acid reflux. I wonder though if it runs on my side too, because we have lymphoma on my side. From what I've read that can be linked to celiac somehow? Anyway, any thoughts or advice would be appreciated. Sorry that it's so long. LOL I just have to tell the whole story.



You mention that you had been all organic for 2 years, did her diet have any gluten in it? The thing that crossed my mind is if you had her on a really healthy, low gluten diet before the blood tests, it may have caused them to be negative. Have you noticed any increase in symptoms after she eats wheat, specifically?

It might also be helpful to know which antibody tests your doctor used. The older ABS tests are not as sensitive as the new DGP test, so that is another thing to consider.

It sounds to me like you need a confirmation of Celiac before you go gluten free, so I would get to the GI doc ASAP and see if he can run the new DGP test, genetic testing and do a biopsy. I have read that it is entirely possible to have negative blood results and still be Celiac. If that is the case with your daughter, the only way to know for sure would be a biopsy.

I hope you get some answers soon! I have a 6 year old who has some symptoms, too. I am waiting for my biopsy results before I begin testing him. I hate to think he may have Celiac, but at least there is a fix!
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Celiac DX 9/2011 ~ Gluten free ever since
Hashimoto's Thyroiditis 10/2011
Premature Ovarian Failure 11/2010
Rheumatoid Arthritis 10/2011
Sjogren's Disease 10/2011

"The best way out is always through" ~Robert Frost

#3 bobbijo

 
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Posted 15 August 2011 - 01:24 PM

We still ate gluten after going organic. I haven't noticed very many symptoms after eating gluten from her. The only thing I can think of is that usually cakes or pastries can make her really tired, but I had assumed that was due to sugar and not so much to gluten. Especially when she's in school though, she seems tired and can be irritable for most of the day. No matter how hard I try to get her to bed at a decent time, she will usually fight sleep. Sometimes she seems to be more tired and irritable after eating gluten, but it's not consistent from what I can tell. I don't remember the specific type of test the doctor did, but from what she said it's pretty accurate.
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#4 bobbijo

 
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Posted 15 August 2011 - 02:39 PM

So I found the lab bill and it looks like she ran the gliadin peptide IGA AB test and the glidiadin peptide IGG AB test as well as an allergy test, a blood count test, metabolic test, Free T4 test (whatever that is), a pediatric allergy profile, thyroid stimulation hormone, celiac tissue transglutaminase IGA, Endomysial IGA screen, and a Immunoglobulin A Celiac Panel. I'm not sure what all of that means, but it seems she ran a bunch of tests.
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#5 pain*in*my*gut

 
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Posted 15 August 2011 - 03:17 PM

So I found the lab bill and it looks like she ran the gliadin peptide IGA AB test and the glidiadin peptide IGG AB test as well as an allergy test, a blood count test, metabolic test, Free T4 test (whatever that is), a pediatric allergy profile, thyroid stimulation hormone, celiac tissue transglutaminase IGA, Endomysial IGA screen, and a Immunoglobulin A Celiac Panel. I'm not sure what all of that means, but it seems she ran a bunch of tests.


Those are the older antibody screen tests. Many labs/doctors are switching over to the DGP (Deamidated Gliadin Peptides)antibody test. It is supposed to be more sensitive for Celiac than the older ones.

Fatigue after eating gluten is a HUGE symptom for me! I almost feel drunk after I eat a piece of bread sometimes (but not every time....go figure). There are a lot of "atypical" symptoms of Celiac that many docs don't pick up on, because they just don't know much about Celiac. It's very frustrating! :unsure:
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Celiac DX 9/2011 ~ Gluten free ever since
Hashimoto's Thyroiditis 10/2011
Premature Ovarian Failure 11/2010
Rheumatoid Arthritis 10/2011
Sjogren's Disease 10/2011

"The best way out is always through" ~Robert Frost

#6 Roda

 
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Posted 15 August 2011 - 05:31 PM

Yes I would get her evaluated by a GI specialist. From my understanding there is a higher false negative rate on the blood tests for children. Both my boys tested negative after my diagnosis. My youngest son who is now 6 1/2 (had many symptoms as a baby, but I wasn't diagnosed at the time then later he had no symptoms) started having symptoms last June. I had him retested last Nov. and he was positive. I chose not to biopsy him and he has done wonderful on the diet since. My oldest who is now 10 1/2 has tested negative three times on the blood work. His new allergist feels he needs to be gluten free so we are going for a scope this Wed. I'll be curious to see what it shows. I almost hope it shows positive because it will validate my gut feeling and concerns not to mention make it easier for school. However, if the biopsy is negative I'm going to trial him gluten free anyway and see how he does. Good luck. Even with negative blood work it is quite possible to be positive on biopsy. If you are alright putting her through the procedure it might be worth it to know and to look for other causes of her symptoms.
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Me:
Celiac disease(positive blood work/biopsy- 10/2008), gluten free oat intolerent, Hashimoto's Thyroiditis/Disease, Raynaud's Disease


DS2(age 9):
celiac disease(positive IgA tTG, no biopsy- 11/2010)


DS1(age 13):
repeated negative bloodwork and negative EGD/biopsy. Started on a gluten free trial(8/2011). He has decided to stay gluten free due to all of the improvements he has experienced on the diet.


#7 bobbijo

 
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Posted 15 August 2011 - 06:07 PM

I've noticed just within myself that I get really tired after having pasta or bread. A lot of times I feel I need a nap afterwards, but so far nobody in MY family has came up celiac. Like I said though, we have lymphoma in our family....so I suspect there's at least some gluten sensitivity if nothing else. As for our daughter, I have planned to go gluten free even if we never get to the GI, but of course, I feel it would be better to at least try and go to a GI specialist. Anyway, thanks for the tips. It really does help to make me feel like I'm not crazy for thinking there's a problem. LOL I think after negative results, it can discourage you a little. That is, until your child starts getting sick again.
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