Can Someone Help Me?

[sweetmag72]

My daughter is 17months old and has had terrible watery diarreha for 6 weeks. She has been to the Dr 7 times. They have taken some blood work as well as stool samples and are finding nothing wrong with her. Due to our military insurance we really can not go anywhere else without a referral and are in a battle to get a referral to a GI doc. We go back on Friday for the results of the latest round of stool samples and have decided if they will not give a referral we will just pay out of pocket, WE JUST SHOULD NOT HAVE TO! They will not test for celiac because she has not been losing weight and is pretty far up on the height and weight scale. Just in the last few days she has also been becoming gassy and bloated. She LIVES on cheerios and waffles, full of glutens. She will get better for a day or two and her stool will be a little more solid then she goes back to the exsplosive watery poopies. Her whole attitude has changed but I have never worried about that until now. I mean she is a todler and has went through a lot of changes over the last two months. Her daddy came home from a year tour in Iraq and we moved away from my family where we had been for a year.

Are there specific reasons they wont test such a young child?

I am so stressed out and worried that I just don't know what to do with myself. We have made many complaints about the Peds blwoing us off. At first they said a virus then when we hit 3 weeks they said toddler diahreha but my mommy instinct says thats not all it is.

I really dont know what I am asking for her but just hope you guys can help me with some insight or maybe what I need to do. I am just really tired of getting the run aroun, tired of cleaning up poopy and washing 5 loads of poopy little girl clothes a day, tired of my little girl feeling so bad!!

[Ursa Major]

Toddler diarrhea is NOT a valid diagnosis. It is never normal to have diarrhea more often than about three times a year for a day or so.

I had watery diarrhea for six months in 2005, and much of that time I was too weak to get out of bed. So, I know how your little girl feels. Poor little one.

You have an ignorant doctor, I heard a lot of bad things about military doctors. It isn't right that you can't see anybody else without paying out of pocket.

In children that young the tests for celiac disease are highly unreliable and are fairly likely to result in false negatives anyway. At her age, putting her on the gluten-free diet to see if it makes a difference is the best test, and many doctors will diagnose gluten intolerance if the diet produces a dramatic difference.

When looking at your situation, you really don't have a lot of choices. In anybody to have diarrhea for so long will result in severe malnutrition, but especially in somebody as young as your daughter.

My suggestion is to put your baby on the gluten-free diet, and to also eliminate all dairy. If you see a dramatic improvement within a couple of weeks, keep her off dairy and gluten for six months. After that, you can challenge with dairy and gluten (one at a time, two weeks apart to catch possible delayed reactions), to see what happens.

If she loves waffles, you can get gluten-free waffles. But it is most likely that she is addicted to gluten. When you take her off it, be prepared for withdrawal symptoms (they can last up to two weeks), which may or may not happen.

And just forget about that idiot doctor!

[sillyactsue]

After going through many doctors who knew nothing about celiac disease/gluten sensitivity (from the time my daughter was 10 months old until now, at 2 1/2 years) I finally found a doctor who will diagnose her with gluten sensitivity. During that time I had her diagnosed through entero lab as gluten sensitive. recently I was reamed by a gastroenterologist for condemning my child to a gluten free diet with out the gold standard positive test results. Aimee was challenged with gluten and given blood test, gene test and an endoscopy. The results were the same as enterolab. She did not have damage to the intestines and she does not have the gene for celiac. However that doctor does not believe there can be gluten sensitivity without celiac disease. Her solution? Keep Aimee on gluten for six more months and see if there is enough damage to show up on tests! Can we all say, "DUCK" oh, I mean, "QUACK!"

More recently though I found a doctor who assured me she needed a gluten free diet and that it does not constitute abuse .

I found that doctor by calling the oklahoma celiac support group. I had to drive four hours to get to him and he was worth every mile. I don't know what state you are in but if you google celiac support group and your state (or surrounding states) maybe they can refer you to a knowledgable doctor.

I have found that calling a doctors office and asking if they are familiar with celiac disease/gluten sensitivity only elicits pompous ass responses from doctors who don't want to say they don't know.

I hope you are able to find a solution soon. I am sorry for your little ones distress and yours too.

Let us know how it goes.

Gloria

[dionnek]

If you can afford it, maybe look into getting her tested through Enterolab or one of the other labs (Kimball is the only other one I know of, but others here might know of more). Insurance will most likely not pay for it though

If you decide to just try the gluten-free diet and see how she does, you can get gluten free frozen waffles (Van's - make sure they say GLUTEN FREE b/c they make both kinds) and you can make gluten-free pancakes (there are lots of mixes - I buy Pamelas' pancake and baking mix from Amazon and they make good pancakes and muffins and cookies and more - I use more of the mix than it calls for to get thicker pancakes though). For cheerios substitute, there are gluten-free cheerio type cereals, but I've tried 3 different kinds and don't like any of them (and neither does my 2 1/2 yr old). However, the Dora cereal by general mills is gluten free and is in the regular grocery store (I find it at Walmart and Publix - for some reason Kroger here doesn't have it). Also Mickey Mouse Club House and Little Einsteins cereals are gluten-free (I haven't tried those). The Dora cereal is great for toddlers.

Good luck, and remember, it will take a while for her to heal if she is celiac, so don't give up if you don't see improvement after a few weeks. It took me over 7 months before I noticed ANY difference, and I still have problems 10 months later.

[sweetmag72]

Thank you all so much for the helpful advice. She is currently on a no milk diet so it looks like I will have to add the no gluten diet too. I was kind of thinking that would be the only way to tell. I am so glad I have found a place for some answers. I am not really sure why but my instincts are sort of telling me Celiac. I will search around the site and find as many gluten free foods as possible for her and thanks so much for the heads up on the waffles and the cereals. She loves Dora so if she is on the box she will eat it.

These may be stupid questions but are veggies all gluten free? What about fruit?

Thanks again for so much information.

[confused]

Thank you all so much for the helpful advice. She is currently on a no milk diet so it looks like I will have to add the no gluten diet too. I was kind of thinking that would be the only way to tell. I am so glad I have found a place for some answers. I am not really sure why but my instincts are sort of telling me Celiac. I will search around the site and find as many gluten free foods as possible for her and thanks so much for the heads up on the waffles and the cereals. She loves Dora so if she is on the box she will eat it.

These may be stupid questions but are veggies all gluten free? What about fruit?

Thanks again for so much information.

Yes veggies and fruits are all gluten free.

No question is stupid in here, so dont be afraid to ask anything.

Im pretty new to all this to, and there is no way i could not do any of this without this support group.

paula

[dionnek]

Thank you all so much for the helpful advice. She is currently on a no milk diet so it looks like I will have to add the no gluten diet too. I was kind of thinking that would be the only way to tell. I am so glad I have found a place for some answers. I am not really sure why but my instincts are sort of telling me Celiac. I will search around the site and find as many gluten free foods as possible for her and thanks so much for the heads up on the waffles and the cereals. She loves Dora so if she is on the box she will eat it.

These may be stupid questions but are veggies all gluten free? What about fruit?

Thanks again for so much information.

Be careful of some dried fruit (and nuts) - I've seen wheat added to nuts and heard that sometimes dried fruit is coated with it so it doesn't stick. Just read the label - it will be listed in the ingredients. All fresh fruit and veggies are gluten-free, and I haven't found any canned or frozen (other than those with sauces, etc.) that aren't gluten-free either, but again, you must read the labels.

[taweavmo3]

Sorry you are having such a rough time! I agree with what everyone else said, if you keep hitting brick walls, just try the diet and see if it helps. I have four kids who are gluten free, but only one with a positive diagnosis. I had to go to several doctors before I found one who would test her....had I known more back then, I would not have waited so long for a diagnosis.

My daughter started getting mild symptoms when we started her on gluten at 8 months old....by the time she was 18 months old, she was incredibly cranky all the time, had a bloated belly, and bulky stools. But we had gradually become used to her tantrums and such, and the doctors kept reassuring us that she was just going to be small...so we waited. By the time she was 3, I knew something was wrong and I had to become proactive in finding a doc who would listen to me.

She is now five years old, and we are spending a ton of money on therapies to get her caught up from her speech and developmental delays. She has been gluten free for over 2 years, and she still isn't 100% well. It frustrates me that no one took my complaints seriously, and had she been gluten free earlier, I think alot of her delays could have been avoided.

Not all kids will have developmental delays/speech issues from being sick with Celiac....but they are high risk for delays if they can't focus on reaching milestones b/c they feel sick all the time. That is something to consider too....and I wish more doctors would consider the long term ramifications of allowing a child to stay sick just to get the gold standard diagnosis. Anyway, that's something else to think about!

Good luck to you...this board is a wonderful place for support and information. There is almost always someone who can answer any question you may have. Take care!

[SheilaW]

I am so sorry that you are hitting a brick wall! I disagree with some of the other replies. My daughter was diagnosed when she was 17 1/2 months old. Her's started when she wasn't even a year old and got Rotovirus. After that he diapers were never right. In May of 06 we took her to the Dr who noticed right away that she should be checked and sent us to a Ped GI. He said "You can start the diet, but it is a hard diet. If you do and you come back in 6 months or less and say that this is a hard diet I really need to know, YOU will have to put her back on Gluten for 6 months." We opted to have her tested. They did the endoscope and confirmed what we thought. YOu would not believe the change in her when she started the diet. FYI There are Gluten Free cerals and Waffels, but you really should have her checked even if you have to pay for it. Some hospitals have a thing where they work with a bank for a guarteened loan to pay them. The earlier you find out the better!

[NoGluGirl]

My daughter is 17months old and has had terrible watery diarreha for 6 weeks. She has been to the Dr 7 times. They have taken some blood work as well as stool samples and are finding nothing wrong with her. Due to our military insurance we really can not go anywhere else without a referral and are in a battle to get a referral to a GI doc. We go back on Friday for the results of the latest round of stool samples and have decided if they will not give a referral we will just pay out of pocket, WE JUST SHOULD NOT HAVE TO! They will not test for celiac because she has not been losing weight and is pretty far up on the height and weight scale. Just in the last few days she has also been becoming gassy and bloated. She LIVES on cheerios and waffles, full of glutens. She will get better for a day or two and her stool will be a little more solid then she goes back to the exsplosive watery poopies. Her whole attitude has changed but I have never worried about that until now. I mean she is a todler and has went through a lot of changes over the last two months. Her daddy came home from a year tour in Iraq and we moved away from my family where we had been for a year.

Are there specific reasons they wont test such a young child?

I am so stressed out and worried that I just don't know what to do with myself. We have made many complaints about the Peds blwoing us off. At first they said a virus then when we hit 3 weeks they said toddler diahreha but my mommy instinct says thats not all it is.

I really dont know what I am asking for her but just hope you guys can help me with some insight or maybe what I need to do. I am just really tired of getting the run aroun, tired of cleaning up poopy and washing 5 loads of poopy little girl clothes a day, tired of my little girl feeling so bad!!

Dear sweetmag72,

I say go with your instincts. They never steer you wrong. The dairy is a good thing to eliminate along with the gluten. Since your girl is already dairy-free, that will help. I think it would not hurt to try the diet. You might want to try it, too. Just leave out the dairy items.

I have a list that should really help. This is overwhelming. I went through this with myself six months ago. You spend most of your day cooking and cleaning obsessively. The rest you are on the phone with reps from companies trying to find out what is safe. I decided to save you the trouble!

1. There are a number of things in the regular grocery that are safe. Some things are labeled already. Wal-Mart's Great Value brand has numerous things you can eat.

2. For the love of God use Coupons on items you are allowed to eat. People can get them and print them out online even. Call some of the local stores and ask if they accept online coupons.

3. Check the ads online and in the newspaper. You would be surprised how many people do not do this.

4. Some items like rice flour and rice noodles are safe to buy at the Chinese or oriental market. The merchants are more than happy to help you if you cannot read the label.

Now, here is my list of great things to get you started:

Condiments:

Smart Balance Margerine

Crisco Shortening

Crisco Oil

Pompeiian Olive Oil

Great Value soy sauce

Heinz Ketchup

Lea & Perrins Worchestershire Sauce

Sweet Baby Ray's Barbecue Sauce

Kraft French Fat-Free Salad Dressing

Kraft Thousand Island Fat-Free Salad Dressing

Pace Picante Sauce

Ortega Salsa

All Classico Red and White sauces

All Jif Peanut Butters including Smooth Sensations

Welch's Grape Jelly

Cool Whip

Philadelphia Cream Cheese

Miracle Whip

Daisy Sour Cream (fat-free, low-fat, regular)

Snack Foods:

Fritos

Tostitos

Lay's Original Potato Chips

Cool Ranch Doritos (Nacho cheese has gluten)

Act II Microwave Popcorn

Cheetos

3 Musketeers candy bars

Butterfinger candy bars

Reese's Peanut Butter Cups

Meat and Protein :

Eggs

Great Value Frozen Boneless, Skinless Chicken Breasts

Extra Lean ground beef

Carl Buddig lunchmeats all are safe

Johnsonville Original Bratwursts (contains milk protein)

Kraft Cheese Shredded or sliced (Kraft is a great company, they never hide gluten in their labels. If it does not say wheat, barley, oats or rye, then it is not in there!)

Cereals:

Cocoa Pebbles

Fruity Pebbles

Dora The Explorer Cinnamon Stars

Seasonings:

Durkee Cinnamon-ground

Durkee Ginger-ground

Durkee Chili powder

Durkee Vanilla Extract (in fact, all of their liquid flavorings, food colorings, and extracts are g.f.)

Emeril's Essence - Asian, Italian

Ortega Taco Seasoning (In fact, since they are under a very strict labeling policy, all of their products are gluten free at this time)

Miscellaneous:

Ortega Taco Shells

Starkist or Great Value Tuna

Butter Buds

Great Value Soy Milk

Lettuce

Tomatoes

Apples

Pears

Carrots

Great Value Canned Fruits and Vegetables

Del Monte Canned Fruits and Vegetables

Ore Ida Tater Tots

Ore Ida French Fries

Hormel Chili

Hormel Spam

Hormel Turkey Spam (Oven Roasted and Smoked)

Hormel Beef Au Jus Entree

Hormel Pork Au Jus Entree

Jimmy Dean Fresh Taste Fast Sausage (links, rolls, and patties)

Plumrose Bacon

PAM Non-Stick Cooking Spray (all except for PAM for baking; it has flour)

Beverages:

Coca-Cola (Diet, Regular, Vanilla, Caffeine Free)

Diet Rite

Folgers Coffees (all including Cappuccinos)

Luzianne Tea (We get decaf)

Arizona Teas

Ocean Spray Cranberry Juice

Some Household Items that are safe include:

Cascade Dishwashing Detergent

All Laundry Detergent

Wisk Laundry Detergent

Dawn Dish Soap (all including the Power Disolver)

SoftSoap Hand Soaps

Murphy's Oil Soap

Hygiene, Cosmetics, and Beauty Items:

Dove Soaps, Shampoos, Conditioners, Lotions, and Styling Aids (Will clearly label gluten if present)

Crest Whitening Expressions Toothpastes

Colgate Toothpastes

Suave Soaps, Shampoos, Conditioners, Lotions, and Styling Aids (Will clearly label gluten if present)

Maybelline (Gluten is clearly labeled when present)

CoverGirl (Gluten is clearly labeled when present)

Wet'n Wild (All except for one of the mascaras)

Olay Quench Body Lotion

Crest WhiteStrips

Colgate Simply White

I hope this helps!

Sincerely,

NoGluGirl

[sweetmag72]

We go to the Dr today for an update on the blood work and stool testing that they have been doing over the last week. I am planning on planting myself in the Drs office until I at least get a referal to a GI Dr. I will definiltey let you all know if I find out anything. My husband and I talked about it last night and have decided to go ahead and start trying the diet.

NoGluGirl thank you SOOO much for the list. I really appreciate it. I guess like a lot of you did at the beginning I feel lost. We went througgh our cabinets last night just to see what we have and basically everythign with the exception of our fruits and veggies have gluten in them.

[mommida]

Everyone has valid points, and I can not dispute what anyone said.

If you start the gluten free diet - your chance for testing is OVER.

A gluten challenge for testing later is possibly dangerous. (My daughter didn't make it through a two week challenge without being hospitalized for dehydration. She had only been off gluten for three months. She was 17 months old at the time, a gave the doctor of doing the endoscopy when she was in the hospital. He said she was too sick. I said she wasn't eating anything with gluten in it ever again.)

She had the gentic test. (positive for DQ2 and DQ8) Genetic testing still has it's flaws and may not be covered by insurance. It does give a diagnoses of Celiac either, just the potential.

L.

[UNCHeel]

What state are you in and maybe we can at least help you get to a Dr even if you have to pay for some of it? Sometimes they will pay if you submit a claim for review and you have a corroborated diagnosis.

[SheilaW]

SweetMag - I hate to hear that you and your family are having to go through this, especially your daughter. I felt like the worst parent ever. My daughter got rotovirus in Dec 05. After that he diapers were never the same. Then in May she started vomiting. We took her to the dr and she had an idea that it was Celiac. THe funny thing is that later on this site we found out that Rotovirus can possibly kick start a dormint gene. This is what our Dr did : Have them do the blood work again and have them check her (SP?) Alkalin phosphates. My daughters was over 7000 and they redid them and had them "Fractionated out" so that they could tell where the problem was ie: Gut, kidney's, etc. Her's was in the gut. THis is one way that we found out so fast. FYI - she was checked for allergies and it came back negitive to wheat. A week after we started the gluten-free diet she had gained weight and went from the under 3% for weight to 65%. It is well worth the try to see if you can find out what is causing her illness. Good Luck !!!

Sheila

[SheilaW]

CHECK FOR MALT IN THE CERALS. YOU CAN'T HAVE ANY KELLOGGS. ONE OF THE COMPANIES HAS CHANGED AND STARTED PUTTING MALT IN THERE - MALTOMEAL IS THE ONE THAT WE KNOW FOR SURE HAS MALT IN THE COCO PEEPLES.

[sweetmag72]

Well we did get referral to a Ped. GI Dr. Who knows how long it will take to get in with one. We are stationed at Fort Jackson SC and were told today we will have to go to Atlanta or Charleston to a Medical college. Fine with me, I just want an answer. She is also sending us to an allegry Dr to rule out allergies of any other sort. The Ped did bring up Celiac today but said she would recomend waiting until the first visit with the GI before starting. Especially since she isn't losing weight and seems to be "feeling" Ok. I just don't trust anything this Dr says.

[NoGluGirl]

Dear sweetmag72,

You are so welcome for the list! I say, do what you feel is right. I had a whole team of GI docs working on me up at IU Med and they missed it and gallbladder disease! There is no way they knew what they were looking for! Then, they told me I just had a chemical imbalance in my brain of serotonin making me feel bad when I am fine. I was doped up on Celexa, and sent home and forced to go to psychotherapy. The horrors I went through the four and a half days I was there included an endoscopy, intercolisis, gastric emptying study, colonoscopy, and blood work. This is how smart these genuises were: they could not figure out why I had gotten down to 84 pounds when I had arrived weighing 87, despite the fact I had been on a liquid diet for four days! Can you say DUH? I hate doctors.

Sincerely,

NoGluGirl

[scorpionco]

My computer won't let me read the posts without opening each one, and I don't have the patience to do that, so if someone has already said this, I apologize! But I wanted to mention a couple things - celiac testing in young children is notoriously inaccurate, so it may not be worth it. What is a much better indication is to just put your toddler on a gluten free diet. When we did that, our son, who was about 15 months at the time, shot up three inches and was suddenly back on the growth curve (this was in response to a short stature workup). He hadn't had diarrhea, but he did have the bloated tummy, and had fallen off the height curve. We tried the gluten free diet because I am celiac, and we figured we would give it a try. We had our pediatrician do the blood tests, and only the gene markers were positive. BTW, we are also military, and your commissary should have some gluten-free stuff. If you are at a bigger one, it may have a decent selection, normally in the natural food section. We are at a very small base, but our commissary still has some Amy's meals and other mainstream gluten-free stuff. Good luck!

Chris

[Adelle]

Hello! I would say that if you are close to a DX, then go for it. But if they won't give it to you, TRY the gluten-free diet. It's a VALID diagnostic tool!! And if your child gets well on the diet, then who the heck is a doctor to tell you that HE knows your child better than YOU!!! My doc said I "didn't need to go gluten free" but I feel SO much better, I would NEVER go back!! You have a RIGHT to change her diet if it helps her!! I felt a change within days of going gluten-free but some people take much longer. That's ok. *hugs* and I hope you find the answers you need!

[Byte Me]

My computer won't let me read the posts without opening each one, and I don't have the patience to do that...

Hi!

If you look at the top of the thread, on the right there is an "Options" button..click this and under "Display Modes" click "Switch to: Standard".

The other display modes are annoying!

HTH

[NoGluGirl]

Dear sweetmag72,

I need to correct my list a bit. I found out from some members that Hormel's Beef Au Jus has cross contamination issues. Lay's does as well. Tostitos have made me ill recently. Scratch those off. Lay's products are not made on dedicated lines, except with the Stax. They are safe. I wanted to warn you before anyone could become ill from it!

Sincerely,

NoGluGirl