Disappointing Visit With Ped. Gi

[e&j0304]

I just wanted to give all of you an update on Ella since you were all so helpful when I came here with questions initially. I posted a thread a couple of weeks ago (Coud my Daughter have Celiac) and got lots of good advice.

We went to see a ped. GI today at a university hospital and he pretty much said that he's sure Ella does not have celiac. He did run a TtG test and a thyroid function test. If these come back negative...what else can we do?

They want to send her to a psychiatrist for medication and we're just not ready to do that. I am so upset right now and actually cried in the exam room today. I don't know why no one can seem to figure out what's wrong with her.

I mentioned to the doctor that her hair has been falling out in clumps and is actually thinning on top so much that it's almost balding and he said, "Well, that's not too concerning to me." How is that not concerning?? My 2 year old is losing her hair and that's just ok?

Could it be possible that Ella has a gluten sensitivity and not celiac? Is there something else she could be tested for that has similar symptoms? I know you're not doctors, but none of them seem to know either. I feel like I could have gotten more help from someone on the street than I have from her doctors.

Thanks again for all your help,

Shannon

[Guest nini]

It really makes me angry when Dr's are so convinced they are right that they are too quick to rule out Celiac or gluten intolerance as a possibility. The fact that he's not concerned about her hair falling out is a big RED FLAG for me that you need to find another Dr. You are NOT going to get anywhere with this Dr. unfortunately. And even if he did run tests and they come back negative, that does NOT mean that she doesn't have celiac. Tests for kids are still very innaccurate. Get another Dr. ASAP. And don't rule out Celiac or gluten intolerance. At the VERY LEAST find a Dr. that will be supportive of you trying the diet After all tests are run. Regardless of the results of the test, you still need to try the gluten free diet and see if it helps. I went through this with my daughter. She is now gluten free over 2 years and healthier than ever. Her Dr.s cannot argue with the improvement in her health since going gluten free.

[tarnalberry]

I, too, would encourage you to keep looking for a doctor until you find one who will take you seriously and work WITH you, rather than AT you.

[Guest taweavmo3]

Don't give up! Try a new doctor, and if that one fails you as well, or if you just don't have it in you to try again........you could do a trial run of the diet. It certainly wouldn't hurt anything, and it would be a better alternative than loading her up on the pills that the docs are so fond of.

I am so sorry....you must be so frustrated by now. I know that deflated feeling after a bad doctors visit all to well. There's still some hope yet, maybe her numbers will come back positive. I would still find a new doctor though...are there any other pedi GI's in your area? Is there a ROCK support group in your area that you could contact and find a good GI for your daughter? Other parents have been my most valuable resources. I thought we had a good doc, but after talking to a few parents, I found out there's one even better about an hour away. I would drive to the moon and back for a good doctor these days!

Keep us posted about Ella......and most importantly, don't give up hope!

[e&j0304]

Thank you all so much for your support. I feel better after reading what you wrote and we have decided to go ahead with the gluten-free diet to see if it helps Ella. Nisla, thank you for the e-mail and for the support. It really means a lot to me to know that there are people who care and are willing to help!

I just went shopping for foods for Ella and I'm a little confused. Hy-Vee (a chain grocery store around here) has a gluten-free list on their website that is 51 pages long. I was encouraged, but then when I was looking at ingredients I noticed that a lot of them had modified food starch and I didn't think that was ok. I was under the impression that modified food starch was only ok if it was derived from corn.

Also, does anyone know if Nabisco fruit snacks (like Blue's Clues, or Dora) are ok? I looked at those ingredients and everything looked ok to me, but I'm not entirely sure that I know what I'm looking for. I also bought Hunt's brand pudding for her...it said it has modified corn starch. Also, I bought her some Flinestone's vitamins with iron (to hopefully help with her hair loss) and the pharmacy staff said those were ok. Are all lunchmeats and cheeses ok?

Ok, I think those are all my questions for now.

Thank you all so much. I'm planning on starting the diet with her tomorrow. I'm tired of wasing time!!

Shannon

[Guest nini]

modified food starch in the US is almost always corn... I believe the FDA requires it to be listed if it is anything other than corn.

I think I remember reading somewhere that those fruit snacks are gluten-free...But def. double check on that one. Ok, I just read on Kraft's website that Nabisco, Kraft and Oscar Meyer will CLEARLY list on the ingredients if there is a gluten source. For example if it's got gluten in it it would say something like artificial flavors (barley malt)...

Flinstones used to contain gluten, but I believe within the past few years, they reformulated to be gluten-free. But I get a childrens multi vitamin chewable at Dollar Tree of all places and it says Gluten Free right on the bottle.

[KaitiUSA]

Well I would definitely encourage a doctor who will look more into this. There is a possibility she is gluten intolerant and not have celiac. If the IgA was run and came back negatve she could have IgA deficiency and had that come back negative when it would otherwise be positive. See how the other tests come back but there would be no hurt in trying the diet to see if it helps.

[Kasey'sMom]

Sharon,

I really feel for you right now. I know how frustrating it is to have Dr.'s that will blow you off. My dd had inconclusive blood results but has responded well to the diet. The specialists we've seen haven't been that supportive but her ped. has been. Having a doctor that believes in you and your situation makes things a little easier. I just wanted to add that we saw improvement on the gluten-free diet but she still wasn't 100%. Later we've found that she has other food allergies and intolerances. Putting everything together has helped her symptoms so much. Now we can tell by her eczema flares and temperment when she's been exsposed to an offending food.

We support you and the descisions you're making!!!

God Bless

[Guest Lucy]

I shop at Hy-Vee all the time!!!!!!!!! Great store!!!! (where are you from, I'm in sioux falls sd) Ask the pharmacist if you have questions, they have all kinds of lists back there. The Hy-vee's here all have different products, some have better selection than others. They all have Skinnys pizza, little individual pizza's in their health market section. My son likes those. They are quick and easy. The pharmacist at my local store is awesome. She goes way out of her way to help me find answers. I see her alot since my son is also diabetic. PM me if you have any other "hy-vee" questions. I have a complete list of their brand "gluten free" foods. GOOD LUCK. Give it a month or two and you should see improvement.

[Merika]

Hi Shannon,

oooooh, doctors make me so mad You've definitely done all you can with this one. Take the test results when they come (whatever they are) and then RUN as far and fast away from this doc as you can.

You sound very concerned for your daughter's health, and "mama gut" is almost always right, IMO.

Since you've run the blood test, you can now be worry-free about going gluten-free. You have nothing to lose by doing it.

Best wishes,

Merika

[Guest taweavmo3]

Careful with the Flinstone vitamins, the ones I bought a couple of months ago for my non celiac son still have gluten in the igredients list. There have been alot of threads on this site in regards to children's gluten free vitamins.......I get my daughter's at the health food store, but I'm sure you could get them cheaper somewhere else.

Glad to hear you are trying the diet. I really hope you see some changes in Ella, I know you must be desperate at this point. When I did the diet trial run on my daughter, I noticed she started putting on some weight within the week. Now she's a little chunk, and I love it!

This board will be a lifesaver for your shopping trips, many experienced celiacs on here to help ya out. Now that we've found what brands to stick with, gluten free shopping is really a breeze. Good luck!

[e&j0304]

Thanks again everyone for the kind words and encouragement. I feel so much better after reading your posts! I really hope this will work for her.

Lucy, I live in Iowa and Hy-Vee is huge here. I found a lot of food on their website and I'm assuming that's the list that you have. It is 51 pages long! I will be sure to ask the pharmacist for help.

Tamara, What was in those vitamins that wasn't safe? I asked the pharmacy and they said that they were ok, but I want to double check the ingredients. Could you post that if you have a minute? Thanks.

I also have one more question for you all. My daughter is maintaining her weight right now, but is not "skinny". He doctor said that she must not have celiac because she has chub on her and celiac kids are skinny. However, with the quantity of food that she eats, she should be SO much bigger. She never seems to be full and is always starving. I am hoping that this diet will allow her to absorb her nutrients right and she will be able to eat normal sized portions and not feel so hungry. Also, I feel that her hair loss can be attributed to inadequate absorption of nutrients. She also has been anemic and I believe that she still is at this point and has dark rings under her eyes. In addition to all of this, I'm hoping that she is able to play and interact with her friends and not obsess about eating. I'm hoping that she will be less irritable and moody and will just be a happy little girl. Hopefully her stools will return to normal (now they are pudding in consistency and a grayish, green color most of the time).

Thanks for reading this...I'm so torn on what to think and do most of the time, but you've all been so helpful. I think she fits many characteristics of someone with celiac or a gluten sensitivity, but since she is not underweight is that possible?? her doctors don't seem to think so...

Thanks again, Shannon

[Guest taweavmo3]

About the Flinstone vitamins.....it actually says "gluten" right in the ingredient list. What a rarity huh? Lol. But, I was at WalMart today, and looked at another bottle. It did not list "gluten" in the ingredients list. Maybe I just have an older bottle or something? You could always just call the 800# on the bottle to make sure they are gluten-free, especially if an older product used to contain gluten. That always makes me a little nervous.

About the weight...has she actually been growing at all? My little girl did lose two pounds at one point, but she had grown a couple of inches so the doctors didn't think anything of that. But, at some point she stopped gaining and growing. She never actually lost anymore weight, but she looked awful. Stringy hair, dark circles, skinny arms and a huge belly w/her belly button popping straight out. I just thought that was her "baby belly". All celiac kids can be different though......I'm having a hard time convincing our ped to test my son b/c he doesn't look like what he thinks a typical celiac kid looks like. The family history means nothing to him.....until I bring Ben in looking severely malnoursished w/watery diarrhea, then apparently he can't have celiac. It's really crazy......I hope things will be different by the time my kids are older.

[Guest nini]

My daughter really didn't look THAT MUCH like a typical Celiac kid either. She was tiny and underweight, but the Dr.s had attributed that to her being born premature. Prior to introducing gluten containing foods in her diet, when I was just feeding her homemade pureed baby food, she was a very chunky monkey, so after introducing gluten foods, when she stopped gaining, because she had been so chunky, the dr. didn't seem to notice. I noticed though. And momma bear instinct is almost always right.

[Merika]

Shannon,

The symtoms you describe (eye circles, hair loss, irritibility/mood swings, and unusual bm's) are classic food allergy symptoms. This could include celiac and other diseases as well of course. Drs are notoriously ignorant of allergies, and seem content to stay that way (grrrrr).

You may want to google "eight common allergens" to learn the biggest offenders (wheat is one) and possibly play with diet, including gluten-free, and consider a rotation diet and/or elimination diet. There is a book by Doris Rapp (?) about kids with allergies, and she includes a very good rotation diet at the back.

I hope you find your answer,

Merika

[Kasey'sMom]

Sharon,

We had a similar expierence to Nisla and several others. Dd was born early and tiny. I made her baby food and nursed. After we added whole milk she really started putting on weight! As she got a little older, she started showing other celiac disease symptoms. She stopped gaining weight and at one point lost a pound or two. The Dr.'s never mentioned celiac disease until we brought it up. Other than dark circles, a little belly and eczema, she looked like any other child. I noticed since going gluten-free she has gotten a lot taller.

Merkia's right about Dr. Rapp. She has done some wonderful work with food/chemical sensitivities. When you read her books it will blow you away. You might even check your local library for books. My library had two very useful books. One was by Dr. Rapp entitled, "Is This Your Child." She has a new book called, "Is This Your Child's World?” She also has a website at www.drrapp.com.

The other book I found is, The Allergy Self Help Cookbook, by Marjorie Hurt-Jones. This book has be newly revised and has great information about using alternative flours etc. She also has a section on food roatation.

If you decided to do food rotation let me know. I've been trying to rotate on and off and would love to have someone to compare notes with!!

Take Care

[e&j0304]

Thank you all again for your suggestions. It's interesting that someone stated this could be allergies. I thought that Ella had allergies at about a year old because her face would break out in red splotches (not hives) after eating things like cottage cheese and yogurt. However, she was allergy tested and the test did not indicate she had a definite allergy. Also, it seemed as though her face would only break out where the food touched her skin and wouldn't break out if ingested without touching the skin. Her pediatrician said she has sensitive skin and called this a "food sensitivity" that she will outgrow. We did switch Ella to soy milk at a year old as well and she still drinks that now because she doesn't lke regular milk. She seems to eat regular cheese with no problem now, but still breaks out with the other thinks and with some salad dressings as well. NO doctors have seemed concerned about any of that and basically blow me off when I talk about it. I even had her eat something I knew would cause a reaction just before taking her into the office and her face looked like awful huge red splocthes and some welts and he said she was fine. It almost looks like a burn on her skin...

Thank you for the information about that book. I will try to get a copy of that to see if any of it sounds like it could pertain to Ella. I feel so frustrated right now because I feel as though her doctors should be trying to figure this out...now me!! I am so grateful to all of you for the help you've given me. Without you, I would really be at a loss.

As far as Ella's growth goes, she has been at about the same weight for the past 5 months or so and has gotten slightly taller, although she is still very short for her age. She is about average in weight and on the bottom of the growth chart for height. However, she has moved up the growth chart as she was barely on it at a year old. At the ped. GI appointment he seemed to be worried that Ella will become obese if she continues to eat the quantities of food she eats. I wanted to scream, "That's just it you idiot!! She has always eaten TONS of food and is just not growing as we would all expect her to!!!" She should be at least 50lbs!! And actually, there is nothing really chubby on her except her big round belly. Even that isn't chubby. It's quite firm most of the time. The ped GI stated that was need to cut back on her portions because, "You don't want a fat kid." Well obviously...no one wants a fat kid. However, that isn't my concern right now and that's not why I was there! I just want Ella to be a happy little girl who can function socially with others without obsessing about eating all the time. I want her to feel happy and healthy. Also, how do you cut down on portions for a child that seems to literally be starving all the time? What if she really does feel hungry? I'm afraid that I'm going to scar her for life by telling her she can't eat if she's hungry or putting her in "time-out" for throwing fits about food.

Anyway, thanks for reading all of that! We are on day 2 of the gluten-free diet here and things are going well. Ella actually likes her "new food" and isn't complaining about it. Of course she still wants to eat all day long, but even if this works I know it won't happen overnight.

Thanks again everyone,

Shannon

[Guest nini]

You said that she drinks Soy milk? Make sure the brand you get is Gluten free because some of them aren't!

I hope you can get to the point with your little girl that I am with mine. She is so healthy now, and so tall, and to see her you would never believe that she was as ill as she had been. It helps tremendously to get a pediatrician on your side with whatever you decide you want to try with her. After going through the testing with the pediatric GI and him telling me, OH, it's only IBS, feed her more whole wheat , and I just KNEW that wouldn't help because by that point I was already gluten-free and noticing the difference in me, and my mom kept pointing out all the similarities in her and the way I was as a child. I went back to her pediatrician and said "Look, I'm not convinced that Dr. knew what he was doing for one, I don't think he took my concerns seriously, and I've been doing research on Celiac SINCE I HAVE IT and I know it's genetic, so what will it hurt to try the diet? Can I get your blessing?" She said yes, go ahead, within several weeks I felt like I had a new child, one that was so much happier.

Just today I took a gluten-free chocolate, chocolate chip cake in for her class for afternoon snack, she was in hog heaven and the other kids LOVED it... When I picked her up I got tons of 'thank you's" from the kids! I try to make this fun for her, so that she feels her food is special and not a burden.

[key]

You said that she drinks Soy milk? Make sure the brand you get is Gluten free because some of them aren't!

I hope you can get to the point with your little girl that I am with mine. She is so healthy now, and so tall, and to see her you would never believe that she was as ill as she had been. It helps tremendously to get a pediatrician on your side with whatever you decide you want to try with her.  After going through the testing with the pediatric GI and him telling me, OH, it's only IBS, feed her more whole wheat     , and I just KNEW that wouldn't help because by that point I was already gluten-free and noticing the difference in me, and my mom kept pointing out all the similarities in her and the way I was as a child. I went back to her pediatrician and said "Look, I'm not convinced that Dr. knew what he was doing for one, I don't think he took my concerns seriously, and I've been doing research on Celiac SINCE I HAVE IT and I know it's genetic, so what will it hurt to try the diet? Can I get your blessing?" She said yes, go ahead, within several weeks I felt like I had a new child, one that was so much happier.

Just today I took a gluten-free chocolate, chocolate chip cake in for her class for afternoon snack, she was in hog heaven and the other kids LOVED it...  When I picked her up I got tons of 'thank you's" from the kids!  I try to make this fun for her, so that she feels her food is special and not a burden.

<{POST_SNAPBACK}>