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My Daughter's Story - Need Help

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I'm new to this board but I have had several friends suggest I post my daughter's story here and see what kind of suggestions anyone may have. I'm not really sure what my next step should be. Here is my daughter's story:

My daughter is 14 mos and has been diagnosed as failure to thrive. She has always been petite, but she was at least maintaining "her" growth curve until 6 mos when she started food. From there she began to drastically fall off her curve and now has fallen off the charts. She is now 14 mos old and weighs just under 17 pounds. She developmentally is on track and her height is average although she hasn't gotten any taller in the last 3 months. She eats SO much food high calorie food so it doesn't make sense she's not gaining. She very often has a distended belly and while she doesn't seem to have an upset belly, 4-6 dirty diapers a day is still normal. When she's running around naked she looks so funny because she's this little bitty thing with this 7 mos pregnant belly:( We have been doing monthly weight checks since 6 mos. Finally at 1 yrs old he referred us to a GI dr. The GI feels there is definitely a malabsorption issue and believes it is Celiac. He has done full blood work, genetic testing, fecal fat test, urinalysis, and we just did the endoscopy on Friday. All of her blood work came back normal but her genetic testing did show she is DQ8 Positive. The first fecal fat test showed no issues so he ordered a 72 hour one done and I don't have the results there yet. When he did the endoscopy, he didn't see any issues but obviously we will wait to see what the biopsies look like. He said he took several from different places. My aunt has a gluten intolerance. There also was question during the last trimester of my pregnancy about whether she was still growing and the concern that she wasn't played into my dr. deciding to deliver her at 38 weeks. During 9 and 10 months since I was questioning a gluten/wheat allergy then, I decided to pull it out for a month and just see if she gained weight. During that time I also was working hard to increase her calorie intake. At her 10 mos weight check she actually had gained over a pound in a month which was HUGE for her. The dr. and I assumed it was because of increasing her calorie intake so I put all the gluten and wheat back in but since then even with working to keep her calorie intake up she still hasn't gained hardly anything and even lost 10 oz at one appt.

My GI dr has kept telling me not to take anything out of her diet unless we have a diagnosis. I've heard it's really hard to diagnose a child this young with Celiac...correct? How often does a dr. not see anything on the Endoscopy and then have the biopsies say something different? If the biopsies come back normal what is my next step?? Should I just take Gluten and wheat out anyways?? I can't tell you how many times her GI has said he believes it Celiac but other then the genetic testing nothing has backed that up. My daughter also had a seizure at 9 mos and there was never any explanation. I've read that malabsorption issues and children with Celiac can have that happen?? I get the endoscopy results back on July 30 which is still a week away and since my gut feels like Celiac is the issue is there any reason to not go ahead and begin to change her diet?? I would appreciate any thoughts or help anyone can give me. I just don't know what to do and want my daughter to grow properly and be healthy.

Thanks in advance!

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Hi there,

I just read your post and I had to poke my nose in. Since christmas, my 3 year old son has been having issues and we just got a diagnosis of Glycogen Storage Disease (GSD). After endless hours of talking to doctors, specialists and "googleling", I have come to learn quite a bit about this disease and this is why your post caught my eye. I know this is a forum for Celiacs but I would venture to say that your daughters symptoms resemble a form of Glycogen Storage disease. You can check it out yourself by typing it in google.

Have you seen an Endocrinologist with your daughter? Usually the first thing that happens after a child is diagnosed with failure to thrive in our region, is being refered to an Endocrinologist. They will test for hormone defiencies and other various endo illnesses, GSD being one of them.

Please keep in mind that there are 13 different types of GSD and some are worse than others. Thankfully my son has a form that is less problematic than the others. Symptoms of GSD include: hypoglycemia, failure to thrive, stunt growth, enlarged liver, muscle cramps or loss of muscle tone, and other symptoms I am not familiar with but I'm sure you can get more info on this website : http://en.wikipedia.org/wiki/Glycogen_storage_disease

Hope this helps and let me know how things turn out.

Naomi

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The most important clue in your statement was that there was a positive change during the month your daughter was gluten-free. It is important to stay on gluten during testing, but all the testing is now complete, even if you don't yet have endo results -- sounds like it is time to go 100% gluten-free for at least 3 to 6 months.

That being said, I certainly would not discount others advice on other possible disorders...doesn't hurt to pursue those while gluten-free!

Hang in there - here's hoping your daughter improves on a gluten-free diet.

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Yes, I agree that now that all tests have been done, DEFINITELY pull ALL gluten out of your daughter's diet. Regardless of whether it's celiac or gluten sensitivity, it sounds as though gluten may be the problem. You'll only know for sure if you place her on the diet for an extended period of time. Also, yes, endoscopies are frequently incorrect for many reasons, and very young children may not yet have enough damage from the disease. The fact that she had a seizure is a serious matter and may indicate that celiac is causing neurological problems, which is very common. Please remove all gluten NOW--I can't imagine any reason for allowing her to remain on a diet that includes gluten.

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I'm new to this board but I have had several friends suggest I post my daughter's story here and see what kind of suggestions anyone may have. I'm not really sure what my next step should be. Here is my daughter's story:

My daughter is 14 mos and has been diagnosed as failure to thrive.

All of her blood work came back normal but her genetic testing did show she is DQ8 Positive.

It might help if you would get copies of the bloodwork and the biopsy reports and see what they say. Often docs say they do a "full panel" and they have actually only done one or two tests.

There are several that should be done, and especially on children because it IS difficult to get positive bloodwork on children.

Check whether they did the total serum IgA, and what other celiac tests they did. You want:

Total Serum IgA

Deamidated Gliadin Peptides IgA and IgG

anti-EMA antibodies

Tissue Transglutaminase IgA and IgG

If they didn't do the total serum IgA, ALL the IgA tests could be invalid.

Also, your daughter improved on a gluten free diet. I'd be thinking that gluten-free is probably a good thing to do.

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Well, you've got a GI that has a mind set that it is Celiac disease and you had some improvement for the one month she was gluten free. Does the GI know that?

Now that all the testing is done, I would ask the GI about diagnosing through a trial diet (and inform him she had done well the one month you tried it). The measure would be change in growth. Not all doctors will do it this way, but it doesn't hurt to try. We did this for my son who had a negative blood test but he was small and my daughter has Celiac so the doctor wasn't convinced he was negative. We offered to do the trial diet because we were already doing it for my daughter and it would be easy enough to extend to my son. The doctor jumped at the chance...but also said he doesn't usually ask parents to do it because if they are not on board to do it, they don't do it right (thoroughly) and then it's useless.

I suggest that so that you have the potential of getting an official diagnosis which will help navigate the school age years with the ability to get accomodations if you need them.

After all the testing is done, there is no reason to keep her on gluten, if you want to try gluten free. A gluten free diet will only mess up Celiac testing and not any other testing that you do if you want to follow-up with any other doctor (say the endocrinologist as mentioned above).

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Thank you for all the suggestions so far! After reading around on here I definitely do want copies of her labs because I know he did different tests but I don't know what they were nor do I know what her specific numbers were. I will get that and then post them. I don't believe I ever said anything to the GI about taking her off gluten and wheat for a month. I guess I felt bc it wasn't proven that he wouldn't take me serious. I definitely will mention that at our appt next Monday.

I will also ask if he's willing to do a trial diet change and see. I briefly suggested it before and he said no pretty quick because it's so difficult to do. I am willing to try anything and will be very diligent. HOW diligent do I have to be from the very beginning? I'm only asking because this seems so overwhelming and I didn't know if there would still be a significant change in her if I worked our way into it? For example, if I begin with taking out everything I see that specifically says gluten or wheat and then work towards learning all the other ingredients and then worry about cross contamination....make sense? I will do whatever I need to because I need her to be growing and be healthy just don't know where to begin.

Another thought I had was to get bloodwork done myself. I've always had digestive issues and can not gain weight either. The first visit with the GI that I took my daughter to he looked at me and was asking some questions and said that if she does have it based on my answers it's a good chance I do to. If I had positive results it would be more likely she did as well too, right?

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YES! If your daughter has the celiac gene, even if you don't get the positive lab/scope results you are looking for, YOU should be tested yourself! She got that gene from someplace :) and it would give you one more clue to the puzzle! That is how we found out my 8 year old was positive (no symptoms), because I had the kids tested after finding out I have celiac, the genetics is there. There is a much better chance you will be positive on labs, it is VERY COMMON for a young child of that age to test normally on the labs, they are too young to really build up those antibodies in their blood, but CAN indeed have damage in the intestines, which you may find out from her scope.

I am dealing with this in my own GI dr, they want a diagnosis, before you do this difficult diet, which needs to be life long and strict. I get that, but if you see results in your child, it may be worth it to give it a try and see how she does, if you get normal results back. However, if she tests normally you may want to do a further examination of her weight issues, just to be sure it is isn't something totally unrelated.

It IS hard, but at that age, she has no idea, and you can just swap out foods for others that are safe, lots of whole foods like fruits, veggies and meats. There are gluten free pretzels, animal crackers, cookies and crackers, chicken nuggets, mac and cheese, and pastas, waffles, cereal, etc that you could implement. If she is not having an issue with dairy (many do in the beginning), try lots of whole milk yogurt, cheeses, etc and also if she likes avacado I'd let her eat as much as she will eat of that! If she tolerates eggs, those are great for her growth.

Good luck, take it step by step and see what this scope shows, I know it is hard to wait for results. Also, get yourself a celiac panel and make sure you don't have it yourself!

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Your daughter is either celiac or gluten intolerant. The weight gain during the month you took wheat out of her diet makes it obvious. Celiac is hard to detect in young children. Your GI seems the type who wants to wait until she has obvious damage before diagnosing. Try to persuade him to dx based on a positive response to diet. If he won't, find another GI.

Remember, if she is gluten intolerant, no test will ever confirm it. Most doctors refuse to acknowledge that gluten could make someone so sick if they don't have celiac. Don't let his ignorance cost your daughter her health. This is a critical point in her development- she needs proper nutrition. Proper nutrition does NOT have to include wheat!

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Seriously I don't think the diet is THAT hard if the child hasn't gotten used to eating pizza, sandwiches and so on. Yews, there will be challenges now and in the future, especially once she heads to the school. OTOH, what if you try the diet and all of her problems disappear? How great would that be?

I do agree that even if you try the diet, don't ignore any other possibilities the doctor wants to look at -- unless you become absolutely sure gluten is the culprit.

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[quote name='Darn210' timestamp='1343041996' post='812945'

After all the testing is done, there is no reason to keep her on gluten, if you want to try gluten free. A gluten free diet will only mess up Celiac testing and not any other testing that you do if you want to follow-up with any other doctor (say the endocrinologist as mentioned above).

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My husband just picked up copies of her labs. Here is what they tested:

Celiac Panel:

Tissue Transglutaminase Antibody, IGA = <3 (<5 negative)

Gliadin (deamidated) AB (IGA) = 4 (<20 antibody not detected)

Immunoglobulin A= 34 (24-121 normal)

Allergen Report:

wheat, codfish, milk, egg white= allergen absent (<35)

72 hr Fecal Fat:

Fecal lipids= 1.5 (<7 normal)

* The 72 hours we were collecting were of course the ONLY 3 days that she only pooped about twice a day.....I don't know what was different that 3 days but usually she goes 4-6 times a day. Could that have messed it up??

HLA Typing for Celiac:

HLA-DQ2= negative

HLA-DQ8= positive

Is there other Celiac tests they should have done? Her full CBC panel came back within range too.

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My husband just picked up copies of her labs. Here is what they tested:

Celiac Panel:

Tissue Transglutaminase Antibody, IGA = <3 (<5 negative)

Gliadin (deamidated) AB (IGA) = 4 (<20 antibody not detected)

Immunoglobulin A= 34 (24-121 normal)

Allergen Report:

wheat, codfish, milk, egg white= allergen absent (<35)

72 hr Fecal Fat:

Fecal lipids= 1.5 (<7 normal)

* The 72 hours we were collecting were of course the ONLY 3 days that she only pooped about twice a day.....I don't know what was different that 3 days but usually she goes 4-6 times a day. Could that have messed it up??

HLA Typing for Celiac:

HLA-DQ2= negative

HLA-DQ8= positive

Is there other Celiac tests they should have done? Her full CBC panel came back within range too.

I see a big red flag waving here. Your daughter, while not IgA deficient, is so low in serum IgA that it makes the celiac test suspect. They only actually did ONE and it was an IgA test. If the "big bucket" of IgA is nearly empty, the chances of finding the particular kind of IgA they were looking for (there are several sub-classes) are pretty slim.

They definitely need to the do IgG versions of all the tests. They can even specifically order an IgG version of anti-EMA, the usual one is an IgA class test.

So...

In a nutshell, I'd demand TtG IgG, Deamidated Gliadin IgG, and EMA-IgG. After that, I'd seriously be thinking about being gluten free no matter what the blood or biopsy says, because your daughter began to GROW while off gluten. That says something significant!

It is very common for kids to be low IgA, also very common for people with low IgA to actually be celiac.

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