1 Year Gluten Free And Still Not Gaining Weight

[Genna'smom]

Hi my almost 3 yr old has been gluten free since May 08 and she is still not gaining weight and she is on a feeding tube. I am concerned for her and no one has been able to find anything else wrong with her. She was diagnosed when she had not been eating anything for a month or more and ended up in the hospital for 1 month trying to figure out what was going on......

I try so hard to keep any gluten out of her diet and she is eating small amounts of food and gets pediasure in her feeding tube at night.....

Any adivce or if anyone has been in similar situation please let me know. She goes back to the GI dr this friday and I have lots of questions for her...

[Pattymom]

We just finished out first year gluten free in Feb., and saw only minimal weight gain. My dd isnow 4.5 years. That said, I had her also off dairy for the last 3 months and saw a slight improvement in the growth, though still not much weight. She's also had and endocrinology workup, and we just had a endo/colonoscopylast month to look for other things and found nothing new, though, thankfully ruled out Crohn's Disease, which my brother has. Seems like the million dollar work up for tiny, and we are no closer to understanding why this child jsut doesn't gain, b/c it's not like we aren't' trying. No calorie we can get her to eat is a wasted calorie. I also started giving her extra zinc supplements in the last month, and it is since then that the height growth seems to hit.

I have no ideas or explanations, just that someone else is in that same frustrating place of trying everything and not finding answers. I try to focus on that we ruled out many awful diseases and know what she doesn't have, and just keep hoping for everythign else to remain normal. I would really like to have her summer clothes this year not be 24 months size like the last 2 years!

patty

[debmom]

Are the rest of the people in your family gluten free also? If not, she may be getting gluten from other sources other than what you are feeding her. I'm sure you know that cross contamination can cause a lot of problems. We were surprised to find that once we had all gone gluten free, we had lots of problems with even the tiniest bit of gluten, or even from the gluten escaping from an old bag of flour when we still had items in the house containing gluten. Once we eliminated all gluten in our food, we started seeing much more rapid improvement in my daughter and the rest of us who were gluten intolerant. My husband, though, does bring gluten items into the house on occasion, such as beer or pizza, and we do see problems. When he drinks beer, we now make him take the bottle out to the recycling after he washes it out, and he no longer asks our daughter to empty the recycling. But it took her showing him the eczema she had all over her arms to convince him that the little he did bring into the house could cause her problems.

I hope you get some good answers when you see the doctor tomorrow. It took us 7 months of hospitalizations to find some answers for my daughter, and that was after several serious misdiagnoses. My heart goes out to you-- it is so difficult tracking down what is hurting your child. But you will find it.

[mellajane]

Hi my almost 3 yr old has been gluten free since May 08 and she is still not gaining weight and she is on a feeding tube. I am concerned for her and no one has been able to find anything else wrong with her. She was diagnosed when she had not been eating anything for a month or more and ended up in the hospital for 1 month trying to figure out what was going on......

I try so hard to keep any gluten out of her diet and she is eating small amounts of food and gets pediasure in her feeding tube at night.....

Any adivce or if anyone has been in similar situation please let me know. She goes back to the GI dr this friday and I have lots of questions for her...

after being gluten free for almost two years I still had not gained any weight. Has she been tested for gastroperisis. I was diagnosed later and its been almost 5 years now in the last year i have just now started to put on weight. I am 32 and was diagnosed when i was around 25. I was sick since i was little. Not being diagnosed correctly for years damaged my small intestines thats where the gastroperisis comes in. Do research on the internet see if it hits home... Good luck

[Genna'smom]

after being gluten free for almost two years I still had not gained any weight. Has she been tested for gastroperisis. I was diagnosed later and its been almost 5 years now in the last year i have just now started to put on weight. I am 32 and was diagnosed when i was around 25. I was sick since i was little. Not being diagnosed correctly for years damaged my small intestines thats where the gastroperisis comes in. Do research on the internet see if it hits home... Good luck

Thanks - she does have delayed gastric emptying....... the drs seem to think this is no big deal and she will grow out of it..... I want to push for more but do not know what else to do.....

[Pattymom]

Did you already rule out Cystic Fibosis and the other metabolic disorders? I know our GI I said the next place to look was pancreatic issues and or renal related concerns, though my dd doesn't have any symptoms of that. It's so hard to keep testing and testing when none of it seems to leads to anything but hassle and expense, and stress on the kids.

I hope you get some answers or ideas.

Patty

[Genna'smom]

Did you already rule out Cystic Fibosis and the other metabolic disorders? I know our GI I said the next place to look was pancreatic issues and or renal related concerns, though my dd doesn't have any symptoms of that. It's so hard to keep testing and testing when none of it seems to leads to anything but hassle and expense, and stress on the kids.

I hope you get some answers or ideas.

Patty

Patty - she has had so many tests, CF sweat test, MRI of the brain for tumors, 3 endoscopies, swallow study as she gags all the time, blood work, food allergy tests, delayed stomach emptying test - you are right it is so hard but as a parent and as my OT said it is so hard when you do not have any kind of official diagnosis........... how much does your daughter weigh and how tall is she - what was she at 3...... My GI is also very laid back and I have to push for things but not sure where to go to anymore and his answer will be to increase her feeding tube feeds - YUCK I hate that as I feel it is not a solution just a band aide to cover up what is really wrong with her...... thanks for all your support and ideas...

Bonnie

[shayesmom]

Patty - she has had so many tests, CF sweat test, MRI of the brain for tumors, 3 endoscopies, swallow study as she gags all the time, blood work, food allergy tests, delayed stomach emptying test - you are right it is so hard but as a parent and as my OT said it is so hard when you do not have any kind of official diagnosis........... how much does your daughter weigh and how tall is she - what was she at 3...... My GI is also very laid back and I have to push for things but not sure where to go to anymore and his answer will be to increase her feeding tube feeds - YUCK I hate that as I feel it is not a solution just a band aide to cover up what is really wrong with her...... thanks for all your support and ideas...

Bonnie

My daughter had a lot of similar issues and I also have met other parents who went through the same. As controversial as this may sound, I would recommend finding a homeopath or a naturopath for a second opinion. Preferably one with an MD (a little harder to find, but worth it).

My daughter tested negative to allergens like soy on regular allergy tests. Our homeopath did a different kind of allergy test and found that soy, food colorings, artificial coloring and certain preservatives were a major issue for her. Sure enough, once we removed those foods, the weight started climbing and all of our "weird" symptoms disappeared.

Gluten, dairy and eggs were also major problems and only dairy and egg came up "slightly" positive on standard tests. Meanwhile, the simple fact is, those foods are major problems for her.

We went the pediasure route with little success for a very short amount of time. We saw major results with an extended elimination diet with weight gain tripling when compared to Pediasure and other weight gain measures the GI and pedi suggested.

Another parent I know also did an extended elimination diet in conjunction with a mostly raw food diet. Her dd's (both with multiple, undiagnosed/undetected food allergies) both thrived once she implemented this. Weight gain started immediately with all other random symptoms disappearing.

A common theme between our kids is they react to miniscule amounts of their "allergens". Trace exposures completely stunt growth and so both of our households need to be completely free of the offending items. It amazes me that dd barely gains weight during the school year....except when on Winter Break and during Summer Break....probably because the trace exposures are completely removed.

Good luck in finding answers with your child. And keep perservering. The answers will eventually come. It's just that sometimes, they don't come with an official, "medical" explanation.

[Pattymom]

how much does your daughter weigh and how tall is she - what was she at 3......

My dd is 29 lb at 4.9 years. She is 38.5 inches tall. At 3, I believe she was almost 24 lbs, 35 inches. At her 2 year old check up she was 23 lbs, most of the gain and growth has occurred in the past 9-10 months, since she turned 4 and we have been stricter with the dairy free. It almost doesn't seem so bad here, she is doing a little growth and gain--I do follow her around with cups of chocolate soy milk. I do understand how important it is to find out what is going on, and frustrating to not get answers.

Patty

[Genna'smom]

Patty

Thanks - she is 26 lbs which puts her under the 10th percentile as compared to her heright which is 37"..... WE did talk about looking for a natural way of helping her and we just might do that. We also talked about taking her to a better hospital but just do not want to put her through all these tests again. Her GI dr gets me so frustrated - I asked if we should be a gluten free household and maybe take her off dairy and see and he said nooooooooo. Thanks again for your advice...

Also she has really bad behaviors and does not sleep good at night....

Bonnie

[Pattymom]

We got the same reaction from our first GI and endo when I suggested going off dairy, as if I suggested locking her in a closet. the firts G did guilt me into ptting her back on Dairy, she had only been off for 2 months. As soon as I did it, her eczema came back and weight gain and growth stopped again. not to mention the tantrums and whining. We went off again,in the next 3 months she grew an inch--when her previous rate was an inch a year. she does better off dairy. We did switch GI, and it was worth it, even with the waiting. He didn't repeat most of the tests, though he did scope her--they were great at the hospital, she was in my arms until she was asleep, and in them again before she was awake--and they carefully explianed stuff to her stuffed animal and Maggie check out her animal using the stethoscope, cuff, even the mask before it was her turn.

He also supported me taking her off dairy--said it's perfectly healthy not to have it as long as she gets calcium somewhere. Not sure what you woud tube feed without dairy, but there must be soy or elemental formulas. I had foster kids with feeding aversions and tubes 15 years ago, it was tricky stuff. I'm sure you've tried it all, but just in case, we had on Speech Therapist who had use frozen things--started with ice cubes to crunch, but switched to frozen chocolate pediasure pops--LOL< had forgotten those stuggles, I don't envy you.

Patty