Uncertainty..

[DLayman]

Well the thing I feared most has come to pass.. Uncertainty.. His endoscopy and biopsy came out normal. So we are supposed to put him on a normal diet, weigh him in tommorow and in two weeks and see if he gains any weight. If not we will do some more stool studies to look for fat absorption and enzymes.

Grrr.. have I been too easy on his system the last few weeks with this 1/2 peice of bread? Have we done this all for nothing? I guess we'll see. I guess I should go back on a normal diet and see how the baby reacts.. who knows mabye it is all in my head.. but mabye not.

I'll be keeping a food diary that's for sure.. those inputs and outputs.

[Guest jhmom]

I am sorry to hear that . One question, did his bloodwork come back positive or negative (maybe you posted that, but I can't remember)?

Maybe the 1/2 piece bread wasn't enough but I know when I was eating normal my bloodwork came back negative and my endoscopy came back with patchy inflammation. Even with that my GI doc would not consider celiac disease, he insisted it was IBS. I am not saying your doctor doesn't know what he/she is doing, I just know doctors have a hard time disgnosing this disease.

Have you considered Open Original Shared Link? That is how my daughter and myself were diagnosed. I had it will the doctors and procedures and just wanted to know what was wrong with me and then wanted to fix it. I went to the docs for over a year and had 5 procedures done. I never even took my daughter to her PED for a diagnosis I went the Enterolab route.

I hope your little one feels better soon and you hang in there, we are all here for you

[DLayman]

We actually have not had blood tests yet.. I guess that is not unusual for this doctor.. ?? I will go with the two week trial and if I see symptoms I will ask for the blood tests.. Like you said mabye the 1/2 slice ob bread was not enough.. or mabye we are barking up the wrong tree.

[Guest jhmom]

If it were me I would try the 2 weeks trial and if I saw the symptoms return I would put him on a gluten-free diet for life!

If you chose to use enterolab the cheapest test is 99.00 and you would know for sure what is wrong with your little guy. The best thing is even now being gluten-free they would still be able to test him (my daughter had been gluten-free for over a month and still tested positive).

[eliana]

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.

[DLayman]

Don't give up over 5 oz. First of all is she eating? How is her appetite?

Second of all go down to basics.. meat and veggies and fruits that she will eat..

BANANAS!! Nice ripe bananas are perfect for these little ones.. that is what my grandmother (a nurse) fed to the little ones they had that had celiac. It was during WW2 and they had to have the police search the town for bananas because of rationing!

You might want to cut down on other foods that can irritate a healing celiac.. lactose intolerance is not uncommon.

Try these things.

I would also not reccomend the endoscopy.. since you have the blood tests done.. it would probably be negative in such a little one anyway.

[Colette]

Becca, My little guy was 13 months and about 18 lbs when his biopsy was confirmed. The night after his endoscopy was the worst. We had to take him to Children's Hospital the following morning for IV, he lost a hole pound over night. He lived on mashed potatoes, scrambled eggs and pediasure for a while. He is still a picky eater, but to look at him now you wouldn't know he was ever that small or had a problem (he is 4 1/2 now) Good luck, and keep your hopes high.

Colette

[eliana]

Thanks guys for your responses. Well we have had an interesting turn of events over the weekend. It turns out the IGg and IGa were extremely high (almost triple the maximum normal numbers) but the EMA (most specific for celiac) was negative. I had not been aware of this. So maybe we have her gluten-free for no reason. She has lost 8 oz. since being gluten-free(2 1/2 weeks) and is only 17 pounds so thats alot. The doc says there is def a problem with her most likely a GI problem, but may not be celiac. SO I am back to square one. She goes to see yet another GI in a month (wish it could be sooner). Right now she has the flu and we cant get a bottle down her to save our lives. I think she is done with it anyway (15 months) but will not take a cup of milk (soy or lactose free). She used to take bottles of soy milk really well. We are trying everything to no avail. They are pushing the endoscopy hard. I am almost thinking we are going to have to do it. What would you do if it was your child? I dont want to put her through anything else she has already had so many tests. She has to have one now for cystic fibrosis, and then I guess we will see what to do next. One other thing, I am 35 weeks pregnant and also have a 3 y/o! NO stress at all!

[Colette]

Hi Becca,

Reading What you wrote is bringing back so many heart wrenching memories. I didn't know what to do either. I was given the impression from the Doctor that the endoscopy was the only way to find out what it was. I'm sorry you have to go thru all this. My son's symptoms started out like flu symptoms. After six weeks of what we thought was the flu, friends from work convinced me to get a second opinion. Thankfully I did. We had never heard of Celiac's Disease. When the Gastroenteroligist walked into the room and asked my husband and I which one of us had it and had our son scheduled for surgery the following week, our heads were spinning. We had to slow the Doctor down to find out what he was talking about. But, I have to tell you the bigest releif was finding out what we were fighting. Enough about my son, I hope you find out soon what is going on with your daughter , it is impossible to fight what you don't know your fighting.

I swear by pediasure, I know it is expensive but, after my son's diagnosis the doctor's told us to put him on it and it helped bring his weight back up. My prayers are with you and good luck whatever you decide.

Colette

[seeking-wholeness]

Becca,

Wow, your stress levels must be through the roof right now! I really feel for you during this difficult time!

It's so frustrating that the doctors seem to be trying to bully you into having an endoscopy done. My personal feeling on the issue is that the false negative rate is too high to justify the risk of the procedure, especially to an infant. I'm not a medical professional, but my guess is that if your daughter's EMA test came back negative, the biopsy will be inconclusive (because you have probably caught the condition early enough that serious damage has not been done--which is great for your daughter's health, but it makes getting a diagnosis a nightmare!). The other problem with a biopsy is that is assesses only the STRUCTURE of the intestine, not its FUNCTION. The assumption is that a poorly functioning intestine MUST be structurally damaged, but this has been shown NOT to be the case!

My suggestion is that you first ask the doctor for a gene test (I believe that at least one conventional lab runs it--maybe Prometheus, which is definitely the best lab to choose for celiac disease tests, from all I have read on this board). If the test is negative, you can (virtually) rule out celiac disease, and if it is positive, that makes celiac disease all the more likely. You might also want to order a stool test for celiac disease-related antibodies from Open Original Shared Link, which costs about $100 and is reportedly MORE sensitive than blood work for diagnosing celiac disease. This is what I plan to do for my children, just as soon as I can afford it, and I"m going to request a gene test at my baby's pediatrician visit tomorrow. We'll see how it goes!

Good luck to you as you seek an answer for your daughter!

[eliana]

Thanks so much for your help guys. It confirms what I have been saying all along. I am going to go get some pediasure today. I dont think she will drink it but it is worth a try I guess. Is the vanilla flavor gluten free? I thought I read somewhere it wasnt. I was thinking that may be the one she would actually drink...she is so adamant when she doesnt want her bottles or cup!

I really think this is the flu. She has had fevers and all that. But it sure doesnt help in the weight department. I talked to someone from WIC who is going to be coming to the house with a scale once a week to monitor her weight. Yesterday her dietician asked if anyone's asked us yet to do hospitalization to get some IV stuff in her. Not yet, but I am preparing myself.

We are still discussing the biopsy. we have an appointment with a new doctor on Feb. 16.

[momoftrev]

Thanks so much for your help guys. It confirms what I have been saying all along. I am going to go get some pediasure today. I dont think she will drink it but it is worth a try I guess. Is the vanilla flavor gluten free? I thought I read somewhere it wasnt. I was thinking that may be the one she would actually drink...she is so adamant when she doesnt want her bottles or cup!

I really think this is the flu. She has had fevers and all that. But it sure doesnt help in the weight department. I talked to someone from WIC who is going to be coming to the house with a scale once a week to monitor her weight. Yesterday her dietician asked if anyone's asked us yet to do hospitalization to get some IV stuff in her. Not yet, but I am preparing myself.

We are still discussing the biopsy. we have an appointment with a new doctor on Feb. 16.

My son is the same age and size as your little girl. We don't know what is going on with him yet. The endoscopy biopsys showed inflammation from reflux but not intestinal concerns...though the doctor said it could be latent celiac. His IGG is low so now we're heading to an immunologist to see what that's about...could be nutritional imbalance. Now, he has a stomache virus and can't keep a thing down. I'm using a syringe to give him some fluids since he won't take his bottle/cup. I am next going to water down some pediasure and see how his stomache handles it. He still has tears and mucus so they don't want to do an IV yet as he's not dehydrated much.

My son has prolonged digestion too...as shown during a gastric emptying scan. They have put him on an appetite enhancement med, previous to this test. They want him to also take meds for the slow digestion...I'm waiting to see if the appetite enhancement works once he's done with the virus.

His first blood results for celiac came back inconclusive so they are being done again and sent to the lab in CA that tends to get more specific results. The endoscopy wasn't fun but not bad either. The worst part was him waking up afraid and some vomitting immediatly after, which they said would happen. He was very gassy all day from the air they put in him to see everything. He had a awful cough for about 3 days following and then was back to normal. I'm doing everything now and being aggressive as possible since their growth is so crutial and slows in a few months naturally. My heart aches all the time and I'm trying to take it a day/week at a time.

[gfpaperdoll]

Eliana, take a clue from your little girl & do not give her milk or soy in those bottles - try some almond milk or some coconut milk or juice - & yes pedialite is good too

I know it is difficult for you moms to think that your babies can live without milk or soy - but for some (most IMO) kids it is doing a lot of damage...

[feedmykids]

My DD was the same. Her TTG was 0, Her Antigliadin Iga was 6 (4 is +) and her Anti Gliadin Igg was 74 (9 is +) Her numbers were so high that they though it might not even be Celiac but could be something else like cystic fibrosis, chrons disease or allergies. WE had her tested for Cystic Fibrosis (negative) and allergy tested for wheat (negative), but since she was doing soo much better on the diet we didn't do a biopsy. After all she wasn't even 2 yet! I think that after 2 years of studying, I finally found a good web site that explains her. SHe is also allergic to casein and is very pale and has trouble with colds and mucus. Check out this site. www.henryspink.org/gluten_casein_allergies.htm

[Fiddle-Faddle]

Eliana, if your little girl's IgG and IgA are strongly positive, that means her immune system is producing antibodies specifically against GLUTEN. I wouldn't say she's on the gluten-free diet for no reason. That's one heckuva reason to stay on it for life!

The question is what else is going on?

I'm thinking you should post what she IS eating, and some of the more experienced here might be able to pinpoint something that might be triggering continued symptoms. I don't mean to suggest that you are doing anything wrong--it's just that it's SUCH a tough learning curve, and so many of us have not only been through it, but taken months and months to figure it all out! And many here have had multiple intolerances.

Those gluten-free substitutes (like bread, cookies, crackers, cereals, etc) are tough on damaged intestines. I know that the gluteny versions are standard toddler fare in this culture, but they shouldn't be.

THere are other possibilities in addition to dietary reactions: she could be reacting to vaccines, she might have Lyme disease (which can be passed on in utero), and there are other syndromes and genetic conditions which can cause poor weight gain/nutrient absorption. But high IgG and IgA are at least one answer right there--gluten is a problem. My understanding is that false negatives are a possibility, but not false positives.

If she is frail, I would NOT do an endoscopy until all other options are tried. It is NOT risk-free, and a frail child would be high-risk for anesthesia reactions.

[Fiddle-Faddle]

Well the thing I feared most has come to pass.. Uncertainty.. His endoscopy and biopsy came out normal. So we are supposed to put him on a normal diet, weigh him in tommorow and in two weeks and see if he gains any weight. If not we will do some more stool studies to look for fat absorption and enzymes.

Grrr.. have I been too easy on his system the last few weeks with this 1/2 peice of bread? Have we done this all for nothing? I guess we'll see. I guess I should go back on a normal diet and see how the baby reacts.. who knows mabye it is all in my head.. but mabye not.

I'll be keeping a food diary that's for sure.. those inputs and outputs.

My understanding is that it takes a minimum of 4 pieces of bread for 3-4 months to cause enough damage to be measured in the endoscopy.

If his bloodwork was positive, then that's your answer right there. The biopsy only takes a couple of 1/4-inch samples out of 22 feet of intestine, so many of us question why it is even considered any kind of standard for diagnosis, not to mention the fact that it completely misses beginning-stage celiac (before measurable damage occurs). That's like waiting for a heart attack before you diagnose someone with high blood pressure.