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Confused...please Help!
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Hello, my name is Becca. I have a little girl, 15 months old who has had trouble since she was about 4 mos old with weight gain. Now at 15 months, she weighs 18 pounds, 1 ounce and is 30 inches tall. She is generally happy but looks so little and frail. Two weeks ago we got results back from bloodwork and she was positive. We met with the GI and he suggested biopsy, we denied because she is so little and I just cant bring myself to do it. It just makes me want to cry to even think of it. We decided to do gluten-free for 2-3 months and see where her weight is. Well on first 2 weeks of diet she dropped 5 oz. I know kids weights fluctuate, but still I am concerned. If anyone has been through this please help. We have had such a hard year, I thought we were starting to arrive at an answer, she has been much happier and calmer since gluten-free but who knows.

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Hi Becca,

What a heartbreak to watch your little one suffer. I know how frustrating it is to deal with all the docs. We all do around this board. What was the blood work that you mentioned? Did the doctor order a celiac panel? My son has been through the endoscopy and biopsy twice. It wasn't nearly as bad as I anticipated. He was asleep through the whole thing, and it lasted less than 1/2 hour. The biopsies do provide a clearer picture of what's going on inside. Learning this gluten-free diet is no easy feat. A great place to start for parents is the Danna Korn book, "Kids with Celiac Disease." I read it cover to cover. I lead a ROCK group (a support group for parents of celiac kids). Try to find some local support in your area. It's amazing what you can learn from people who've gone through the same thing. Good Luck!

Kathy

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Hello. Thanks so much for replying, I really didnt think anyone was going to. Anyway, Eliana had blood work done-she had the IGg which was 131, the IGa which was 133 and the EMA came back negative. The doctor who ordered the tests wants to do the sweat test for cystic fibrosis, talk about scary. I am dreading having to do the biopsy. I pretty much am scared that it will come back negative, and then what. There is def something wrong with her though. Today she has been throwing up all day. Last time we had her at the doctor she had lost 5 oz. in 2 weeks-alot for her-especially to me. Ever since we got the bloodwork back we have had her on lactose free milk (before she was on soy). She has been constipated and then with the throwing up we decided to put her back on soy. I am so worried abuot her, she will not eat or drink anything and seems to be getting worse. I dont know what to do. My husband and I are discussing the biopsy but it is so scary to me. How old was your son?

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Eliana be careful about soy milks and other milk substitutes like rice milk. They often are processes or contain barley malt which has gluten. Will your daughter drink pediacare? It is gluten free. I found it helped my son maintain some weight while we had him on gluten before his endoscopy. He is 2, and his biopsy results came back negative, but we havn't got the blood tests done. The blood levels and your daughters symptoms seem to hold their own I would say, but like Kathy says the endoscopy is not all that terrible, they put them to sleep, and it is a very short proceedure. The kids really tolerate it well, our son was up and running around as soon as we got him home!! <_< and they said he would be sleepy for 24 hours.. HA!

Also have you looked at the forbiden and safe food lists on this site? they were very helpful to me as well as the book Kathy suggested. Also here is a site with a listing of general grocery store items and treats that are gluten free. (as alwasy double check labels) http://homepage.mac.com/sholland/celiac/GFfoodlist903.pdf

Kathy, did both biopsies on your son come back positive?> I am gearing up to pretty much demand the blood test if anything to put my own mind at ease.

Denise

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Hello, as far as I know the soy milk we are giving her is gluten free. I know that rice and soy dream are though. I will call the company(SunSoy) today. I dont know about Pediasure. She wont drink soy formula...we just tried yesterday. She is very particular about her bottles and sometimes we have to sneak it in in her sleep. It is either that or she doesnt drink anything except water or maybe a little juice. This has been going on since 7 months, when I had to stop nursing.

She was throwing up everything last night. We finally got some Pedialyte in her and she hasnt thrown up yet today. I think its just a flu bug (phew). She goes in this morning to get her weight checked due to the throwing up and how little she is to begin with. Last night we gave her Pedialyte in her botlle nad now she will not even drink soy milk out of it. Uhoh. Anyway I think the milk even lactose free does bother her but I am willing to try anything at this point. Maybe Pediasure will work. I will ask her doctor today.

About the biopsy we are still discussing it. One of her docs wants to do the test for cystic fibrosis. That really kind of freaks me out. Well I gotta go, she needs me. Thanks for all your help and God bless. Becca

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So sorry to hear you are going through all of this with a little baby.

I did testing through enterolab (they test the stool and do a gene test based on rubbing a swab inside the cheek. I was able to find out I was sensitive to gluten, yeast and the protein in milk - which is casein. So even lactose free milk does not work for me. You may want to double check rice dream as a I think it as a small amount of malt by another name. Pacific brand are good if you can find it, I have seen it at Whole Food and My Organic Market. I have read that soy milk is not the best for babies but I suppose you are feeling desparate. There is also Almond milk. Perhaps for now just use juices and see how the baby does.

good luck.

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Eliana, I have recently gone through the turmoil of learning that my new little grandson is gluten sensitive and allergic to all milk and dairy, and he is nine months old now, so we are experiencing some calm, though he now has an ear infection and pink eye, both for the second time. I know the heartbreak of seeing your little one in great distress!

Here's what I want to tell you: I have gluten sensitivity, allergies to all milk and dairy, along with egg whites and yeast. For the past 51 years I struggled with asthma and lots of other symptoms, and saw lots of doctors and specialists. No doctor ever pinpointed what was wrong with me--it took an elimination diet and working on my own to learn the foods to which I was allergic. When I went for a colonoscopy two years ago, they told me I have Celiac. Now I stick strictly to a diet geared toward eliminating ANY food to which I am allergic. It works!

Now, when my grandson was several weeks old it dawned on me (I keep him, since his mother works) that his distress occurred each time he drank his bottle. We got him off of milk and onto soy and that worked wonders. We have kept him strictly on baby foods and fresh foods that have no gluten, milk, or dairy. It's second nature to me by this time to read each and every label, and when he did accidentally get wheat and milk it was drastic--three days of diarrhea, crying, irritability, stomach cramping, inability to sleep, and fussiness. It was terrible.

The diet is pretty easy once you get used to it. Jars of baby food without the offending ingredients, fresh fruits and vegetables steamed and blended (I add water to dilute them, then add small amounts to baby rice cereal). I shop at Henry's, Jimbo's, and Trader Joes, and have found almond meal, corn flour, rice flour, etc. that I am using to make cookies and teething biscuits. I discovered Health Valley Rice crackers the other day, and a few other bland crackers that are okay. I am taking one step at a time.

I hope and pray that you will soon learn just what is going on with your little one, and it sounds as though you are dedicated to helping her each step of the way. I would be happy to share with you if you want to email me at wclemens@nctimes.net. God bless! Welda

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Welda, can you explain how you knew that you are allergic to yeast and egg

whites? Was it by testing or by elimination? I am still having prolems,although

I am gluten and lactose free. Thanks for your advice.

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First off, please forgive what this might look like when it posts. This is the first time I have posted to this new board. I am still learning how to use it. The old one was easier, but this one is really cool.

I also denied the biopsy after a positive blood test. My daughter had been gluten free for a few months and had improved. Keep in mind there may be other intolerances present. It did take her about 4 months to start gaining weight. Chin up though, when it comes back, it really comes back. About 8 months after going gluten-free, she hit one serious growth spurt. She grew 3 inches and gained about 8 pounds over the course of a month. The important thing for you to do is study every aspect of the diet and learn about symptoms of other food intolerances as well. If it is celiac, she will improve. It can be very scary when you don't know what is going on with your child. You feel very helpless. You should still do whatever tests that your doctor recommends while the opportunity is present. It is so hard to get a doctor to see celiac at precisely the right moment. Take advantage of it. We, I mean she, is dairy free. We use Silk soy milk. She doesn't seem to have a problem with it. This doesn't mean that your daughter won't though. It is kind of a trial and error thing. I wish you the best of luck and will keep you in my thoughts.

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Eliana,

I want to make sure I understand your post. Did you say that Rice Dream is gluten free? The Rice Dream I was looking at the health food store yesterday is NOT gluten free, it has malted barley in it. I'm not sure I understood right, but just to be sure I wanted to mention it so your little one doesn't get sick from it.

Blessings,

Lily

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Hi, How did you find out you were allergic to yeast , i found out by reading a magazine and did the quiz and i passed it with flying colors. So now they had a list of things not to eat so now i really watch what i eat, and i can tell when i mess up.

the article said the yeast problem would go away in 21 days if you followed the diet and that it would help lose weight. so here i go on to something else.laurie anne

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Hi Judy and Laurieanne, I learned that I was allergic to egg whites and yeast (along with all grains, milk, and dairy) by simplifying my diet and an elimination diet that I conducted myself. I have been blessed to have asthma for the past 51 of my 59 years, so after eating anything with egg whites in it, or bread with yeast, (or any of the other mentioned foods) I would start wheezing and gasping for air within 15 minutes, my signal that I was allergic to that certain food.

At the time I felt so sorry for myself, having to suffer with these horrible symptoms, and never knowing when I would start wheezing or gasping for air. I now am quite thankful for my "early warning system," which was so faithful to alert me to the fact that I had eaten forbidden foods.

So you can see why I now see that darn old asthma as a "blessing." Since getting really strict with reading labels and eating fewer processed foods, along with eliminating chocolate (milk chocolate--duh, I have to say now) I can breathe so well. I recently have been able to stop most of the asthma medicine I have taken for years, so I consider this a true miracle. Thank God! Welda

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Hi Becca,

Have you gone through with the biopsy yet? Your daughter's anti-gliaden antibodies are awfully high. There's a great deal of comfort in a biopsy report that suggests celiac disease. Celiac disease is so treatable! In addition to the biopsy reports on my son, we also did the Enterolab testing. I feel very strongly that Dr. Fine has developed the next generation of celiac testing. It's painless and simple. In answer to your question, my son's first biopsy (at age 11) indicated partially blunted villi (early celiac). Several months after going gluten-free he had a repeat biopsy to reevaluate the problem. The villi were normal. He had been sick for YEARS before going gluten free. This has been a tremendous blessing to us. Please give Enterolab a chance to help you. Good luck,

Kathy

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Becca, I would like to second Kathy's suggestion about using Enterolab. I have used Enterolab to order tests for 7 of my family members, and I have always been more than happy with them, their simple stool sample tests, and their responses after the testing, when it came time for diagnosis. Painless is the word! Welda

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I have had many biopsies and they are painless. My first one was at 20 mnts. 2nd at 32 mnts. and third at 12 yrs. They only one I remember was last year and they put you to sleep and then you wake up soon after with a bit of a sore throat but that is all. It is really simple and I recommend it

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The only sure fire way to diagnose Celiac is to have the biopsy. As others have said, is is painless. You may not get accurate results if your child is on a gluten-free diet before the biopsy.

If your child's doctor hasn't told you all of this, I recommend a second opinion. A good gastoenterologist will tell you this.

Good Luck.

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Becca-

Our daughter Samantha was the same weight at 15 mos as your daughter. We had done a great deal of our own research after getting lots of strange blood results from a variety of specialists who could offer no real answers on how to HELP our daughter. She had extremely low neutrophil count (part of her white blood cells that help fight infection) which the Hematologist classified as "Autoimmune Neutropenia" and said she would most likely grow out of it by age six but gave no explanation as to how this occurs or advice on how to keep her healthy. By the way, he is very well known for treating kids with cancer and people travel from other states to see him. My sister died of leukemia, so going to this office was a CONSTANT reminder of that and I would get so emotional each time I had to bring her. It served as good motivation to seek my own answers to the questions we had. Anyway, we suspected she had a dairy allergy at first and took her off dairy. At the next office visit, following the removal of dairy, her neutrophil count was near normal. But her weight was still very poor and so I asked her pediatrician for a referral to an allergist since we were beginning to suspect that her food sensitivities went beyond dairy.

Well we waited a very long time to see the "highly recommended" allergist who disappointed us with his complete lack of bedside manner and disregard for our input. Then we waited weeks for the results. Samantha's tested negative for all the common allergens because her IgA was undetectable. The allergist said "although we tested for x, y, & z we cannot tell you whether or not she is allergic to them". He actually told me that her results looked like that of a malnourished child. Mother guilt set in....I was NOT starving my child. I struggled with her constantly to get her to eat. Eating was painful for her. She would get sores in her mouth (associated with the low netrophils...also with Celiac which I later learned...I get them too). I was soooo discouraged...I thought for sure we'd get some direction from the allergist. He did suggest we see a GI as it was obvious that the immune response was happening upon digesting certain "unknown allergens".

So we got that referral and the appointment was set again for a LONG time into the FUTURE. The pediatrician ran tests on her stool for parasites which came up negative. So we decided to take Samantha to Naturopath in the meantime. We were fed up with specialists compartmentalizing our daughter and failing to she her as a whole little person with systems that interact. Upon the naturopath's recommendation and our own research we decided to remove the gluten (& soy which also seemed to effect her) from her diet. Finally, improvement! She was having more good days. Less irritable, less diarrhea (she had been having an average of 6-7 poopy diapers daily), and gaining weight. At our next appointment with the Hematologist her blood counts (other than mild anemia) were also within normal range. We went a couple of more times to this office before seeing the GI...the results stayed & her neutrophils continued to improve.

Finally got to see the GI who reviewed all the info and was very open to our input and research. She could not order the endoscopy because she knew it might show a false negative but said she was 90% certain Samantha has celiac disease with IgA deficiency. Because we were finally seeing a weight gain she agreed not to gluten challenge her for the sake of the endoscopy.

At our next appointment at the Hematologist, Samantha was released! Her tests were completely normal including the anemia.

Still I could see that more improvements could be made with her diet. She seemed to be existing on rice, rice milk and any alternative gluten-free "Carb" she could get. The more ingredients the worse her digestion. Some of the gluten-free ingredients in mixes seemed to cause problems (esp. potato starch and bean flours) as did many of the grain alternatives (quinoa, millet). So I did some additional research and found info on the Paleolithic diet. This diet recommends eating only foods that could be eaten uncooked in Paleolithic times as foods such as dairy, grains, potatoes, beans, were not consumed because they are essentially toxic without a great deal of cooking or processing. It made sense and seemed to spell out all the foods our daughter was having trouble with.

Samantha now eats only meat, fish, veggies, and fruit (mostly organic). It cuts out the guess work and she is doing great. I'd even say she's getting a second chin. Still irritable at times (but it may just be the age and her temperament). We haven't seen a doctor since December! She poops 1x per day and sometimes even skips a day. Days seem long sometimes. I am constantly in the kitchen because she is always demanding food (catching up I guess) and when I get frustrated I need to remind myself that less than 6 months ago I was pleading with her to eat.

I am sorry this is so long but want to say...Please keep seeking those answers. When I felt hopeless our naturopath said to me,"Never forget, the human body has a remarkable ability to heal itself." It was such a simple statement but has kept me striving for the keys to health and not falling too deep into the disease mentality.

Traci

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Traci,

That is an absolutely remarkable story, thanks for sharing it. It is a miracle that you figured out your daughter's situation in spite of the lack of help from the MDs you saw. Like you, a naturopath is the first one who tested me for celiac (after no one else could figure out what was wrong with me).

You are a wonderful mother!

Laurie

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can someone give the exact way of requesting an entrolab test? does the doctor request it or do we request it via mail? if so what is the mailing address? thank u

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Hi Sarah. You just go to the Enterolab website (www.enterolab.com) and order the test yourself from there. Once you place the order, they'll mail you a collection kit and set of instructions. You only mail back the sample on Monday, Tuesday, or Wednesday. They are helpful and pretty quick to respond if you email them.

In hindsight, I think I would have emailed Dr. Fine and told him what was going on with my daughter and asked him which tests I should order. If you only have a certain dollar amount to work with, he could tell you (I would think) what tests would be most helpful.

Good luck,

Elaine

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S.

I agree with Elaine. I had been going in circles with doctors, and found the Enterolab site on my own and just went ahead and ordered a bunch without fully understanding. If you can get guidance from Dr. F. that might be a good idea.

You can ask for a receipt and then send the claim to your insurance.

Good luck, Nin

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Does anybody know if the entrolab results are acceptable proof for the benefits for medical exemptions on taxes and flexible spending accoutns, etc...? Instead of using a biopsy as the proof?

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    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
    • Mnoosh, I had swollen lymph nodes prior to celiac dx and for a while after going gluten free. My neck as well as groin. The groin ones were the worst. Guess what? All gone! It's hard to recall a time line & consider that everyone is different but I think mine completely resolved within a year.  You've been given great information. Just breathe and then again, breathe. You're going to be fine. 
    • It is the only thing you have eaten, so it can't be anything else?  I eat it with no issues so I am not sure how you can be certain that is the problem.  All I am saying is that its sort of "your word against mine and the company's word".  
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