[my3monkees]

We are in the process of trying to figure out all of my dd's food intolerances. She is 11 and has been dealing with chronic stomach problems for some time now. She has had problems since she was a baby, I had to eliminate all dairy in my diet while she was nursed or she broke out in eczema and had moucousy(sp) poop. She is 4' 9 or 10, but only weighs 68 lbs. I think she is going to be naturally thin. (not inherited from mom! LOL) But it is getting extreme. She needs a size 8 around the waist, but a 12-14 in length. But until very recently despte how thin she was, she always had a belly. I noticed the other day it is completely gone! I tried to talk to the ped. about it last year, but she just told me to giver her probiotics watch what she ate. This year I insisted something had to be done, it is starting to affect her life, she doesn't want to go anywhere without me, she is so afraid of getting sick. She will be a teenager soon, no fun being a teenager if you never want to leave your mothers side! Then again, maybe I should leave things be! LOL

Ped. suggested trying several different foods, in some elimination diets. Gluten was included as we belive my mother is Celiac. When she was having major health issues 30 yr. ago a natural doctor, took her off gluten and she immediately felt better. He didn't even give her a name for it at the time.

So we took my dd off gluten, and it definately has made a differences. Her stomach aches are almost gone, It wasn't even until she was starting to feel better that any of use realized how bad the problem was, she was so used to feeling ill, she had forgotten how to feel well. She actually came up to me and asked what it felt like to be full, here she would only eat until her stomch hurt then stop. She didn't recognize feeling full. made me feel like mother of the year! I had no idea, how bad it had gotten. We are still not done, we are still trying to figure out all the reason behind some stomach aches. I have been giving her soymilk for years due to the dairy issue. Turns out that was causing problems. So we have since switched her to ricemilk.

Last week after almost 3 weeks gluten free, we let her give it a try, at peds suggestion. She ate 2 donuts, she didn't feel bad right away. She said she felt slight nauseaus, but she had also eaten 2 donuts! She went to bed, got up in the morning felt fine. So i told her to go ahead and try cheerios with rice milk, she immediately ended up in the bathroom doubled over.

Now its stands to reason I should agree, she needs to be gluten free. I do on one had but I'm struggling with it also. Because, unfortunately the blood test came back negative for Celiac, but the ped. doesn't want to put her thru a biopsy right now either. A part of me agrees why put her thru it if I don't have to. I'm just so paranoid about removing a food that doesn't need to be removed. When my mother was diagnosed with the gluten intolerance, she decided I must have it too(I don't). So she put me on the same diet, which believe me back them there wasn't alot of good food available, like there is now. It was very restrictive. Of course my mother also seemed to jump on every health fad that came thru in the late 70's early 80's, believe me there were alot of them! LOL My rebellion and trying to gain some control over my own life and health, led to overeating especially junk food whenever she wasn't looking. I'm still battling it, my weight is such a source of stress and depression for me. I'm so afraid of doing that to my dd! Even though, she is actually taking it quite well! She is just so thrilled to be feeling better

Now I'm dealing with if I should put her thru the biopsy or not. Obviously she doesn't want it! But, I tend to feel we should have it. But do I want it for ME or for HER? It would also mean putting hr back on gluten, which she doesn't want. I'm also afraid a 4 week gluten challenge would be tough on her. Now that she understands what not having stomach aches feel like, I'm afraid she will just stop eating to avoid them. What if that comes back negative also? Do I put her back on gluten, just because a test says so? If she feels better without, great,

If anyone has made it thru this whole long narrative, including typos! Thank you!! Any advice would be appreciated or just a word of encouragement!

I'm giving myself stomach aches, just trying to figure this out! LOL

Thanks!!

 

[changingseasons]

IMO, if you know that she feels better without gluten, there is no need for testing- just go gluten-free. Visible results trump test results any day. And she could easily have a gluten allergy without having celiac. Gluten is really hard on the digestive system anyway, so living gluten-free is actually pretty healthy. It's definitely not a necessary food.

Many kids that are dairy allergic also have problems with soy, so it makes sense that she couldn't tolerate the soymilk.

We can always help you if you're having trouble finding GF foods to eat. Check out the recipe sticky at the top of the forum too.

 

[nalo]

I agree. She doesn't need to have Celiac disease to have a serious intollerance to gluten. There are tons of people who are gluten intollerant who are not Celiac. It sounds like she needs to be GF for the long haul and I would really suggest you look into any local support groups for her and also perhaps consult with a nutritionist who specialized in Celiac/GF who can help you with the huge changes this will mean to the way you all eat. There are tons of people on this board who are GF too so you can lots of specific questions answered about what to eat now, how to cook, etc. I'm so glad you have tracked down the problem. On a side note, she will probably start gaining weight now and get to a more normal weight for her height - this is a good thing!

 

[Wugmama]

NONE of the tests are 100% accurate. Your child's reactions ARE 100% ACCURATE. End of story, really.

You both are so fortunate to have discovered (at least part if not all) of her problems so now she can feel well!

~Tracy

 

[chlobo]

The only possible reason to get a dx would be to make it official foor school. But if your ped. will write a note instead I don't see how the dx would be necessary. This might be more relevant with a younger child who wouldn't be as diligent as your DD about food consumption.

IMHO, I find being dairy free way more restrictive than being gluten free.

 

[menomena]

Quote:

Originally Posted by Wugmama NONE of the tests are 100% accurate. Your child's reactions ARE 100% ACCURATE. End of story, really.

ITA.

to you & your DD. Hopefully she can start healing and feeling better soon.

 

[p1gg1e]

So glad you figured it out!

My YDD has celiacs , I say that because she stopped gaining weight 6-12 weeks of life, she screamed when she pees , cried all the time , and now has discolored teeth ( the ones that came in first).

If at 18 months ( fully recovered) I would need to make her eat gluten for a test that may not come back positive to prove ( and hurt her) what I already know. DH's family all has all signs of celiacs. That and my elimination through breastfeeding is all I need to know.

One thing that might help her keep healing would be a high count probiotic. I really like renew life 50 billion.

Another way to test is biofeedback by an ND...no gluten eating required.

 

[my3monkees]

Thanks for the replies. I think I have been wanting the "official" diagnosis more for my benefit than hers. I'm the one with the issues. I have to keep reminding myself that her situation is much different from mine.
I don't want to transfer my food issues to her. She has enough problems with food!

The more I think about it, putting her back on gluten for the biopsy would probably backfire. I'm afraid she may just basically stop eating. Which is the last thing she needs.
If she wants a definitive diagnosis when she is older that will be her choice to go back on gluten. My mother has gone 30 yr. without an "official" diagnosis.
Thanks!!

 

[p1gg1e]

There are so many great gluten free foods and mixes. She will have so many choices and will feel better and hopefully eat better.

:

Do you have Celiacs?

 

[my3monkees]

Quote:

Originally Posted by p1gg1e There are so many great gluten free foods and mixes. She will have so many choices and will feel better and hopefully eat better. : Do you have Celiacs?

There are alot of choices out there now, I'm finding. We have found some really good ones.
I don't have Celiacs, but my mother does. Unfortunately that is where my issues come from. When she was put on the gluten free diet almost 30 yr. ago, she decided I needed to be on it also. Even though I had no symptoms of it. I realize it is a healthy way to eat, but back then the food choices were very limited. So I rebelled and would pig out every chance I had. Then when I started putting on weight, she would be me on a 1000 cal. day diet. So I snuck more food as I was hungry. Then she would portion out my food for the week and put it in a seperate container and that was what I was allowed for the week. I was a normal active kid, but she decided I was hyper and I was forbidden to eat any sugar. Or decide I needed to be on a cleansing fast for several days, and I was only allowed juice or fruit. My stepfather thought a good punishment for not doing my chores properly was to force me to eat liver for dinner, which I loathed. Hence, I have food issues and struggle with my weight to this day. I am a very emotional eater. I had been doing well on Weight Watchers till this all started with my dd, now I am struggling to get it back under control. I love my mother dearly, but to this day she doesn't understand. She is awesome with helping us purchase food for dd though, as she knows we are on a tight budget.
I am trying sooo hard to not transfer this issue to dd or my ds's for that matter.

 

[AquariusHome]

Kudos to you for approaching this issue with so much consciousness. It says a lot about what a good mama you are that you are paying such close attention to your own issues with food and thinking through how you approach this with your dd.

I agree with everyone else that a diagnosis isn't really necessary. However, since your dd is nearly a teenager and you are interested in not "controlling" her around food you could allow her to make the choice for herself. And for that matter, give her as much control over the situation as possible leaving yourself in a supporting role. My guess, from what you say, is that she will choose what her body needs to be healthy.

Good luck -

 

[Marie2375]

If she went gluten-free before being tested for Celiac, she could get a false negative. You MUST be consuming gluten for a reliable Celiac test result. You could put her back on gluten for a few weeks (depending on how long she was GF) and then test again. The biopsy is the gold standard, but you could also get an EMA blood test. That test is very, very reliable, but, again, you must be consuming gluten. If she has Celiac Disease, it is incredibly important that she completely avoid gluten. An eighth of a teaspoon a day is enough to keep the intestine inflamed. The damage from Celiac can lead to malnutrition, osteoporosis/osteopenia, cancer, diabetes, rheumatoid arthritis. Is she has a gluten intolerance, gluten may just make her feel bad. She might be ok eating gluten from time to time. If she has Celiac, gluten is causing damage to the small intestine, so she cannot afford to eat it (even if she does not feel sick when she eats it.)

Most GI's and Celiac experts will insist on an endoscopy. The GF diet is very difficult and must be adhered to life-long if you have CD. They don't take it lightly and they want you convinced that you need it so you will comply more willingly. You don't want to be wondering if you really need it or if it is ok to treat or if you are maybe over your intolerance. If you have CD, you never get over it. The diet is life long. Some people go off the diet, eat gluten w/o symptoms, then go on to develop other problems because the intestine was being damaged by the gluten.

 

[momofmine]

I don't think you will do the same thing to your daughter at all. She is old enough to see that, wow, I was really sick before, and then I felt much better. And then when I ate gluten again, I was doubled over in the bathroom. That is proof enough to her, and she wants to feel good, and you can help her by cooking lots of attractive wonderful food for her. I would not put her through a biopsy at all. Any invasive test like that you have to ask yourself: What information will this give me? Then, what will I do with this information?

If the test comes back negative, will you go ahead and feed her gluten?? It sounds like you're pretty confident it makes a difference for her. I would go by your child's reaction and trust your instincts, not the medical tests.

Glad she's feeling better!

 

[p1gg1e]

Quote:

Originally Posted by Marie2375 Most GI's and Celiac experts will insist on an endoscopy. The GF diet is very difficult and must be adhered to life-long if you have CD. .

My YDD has such strong symptoms that just trace makes her scream in pain. I could NOT have her eat gluten for 8 weeks just to get a test that she needs for a GI dr. just so THEY know. The damage it would cause just getting to the test would be devastating.

We have been doing the GF diet for 16 months now and really we don't find it that hard to do. You get used to it and its amazing whats gluten free anymore

..but I worked for a natural food store for years so diet changes are something that we are used to

 

[Ruthla]

I personally put myself on a GF diet without any special testing, because, when sick, I didn't have the energy to run to a zillion different doctors and try to get them to listen to me and run the tests I wanted.

I did a 1 week GF test on my 11yo (now 12yo) but I didn't see any obvious improvements after a week, nor any obvious problems when gluten was re-introduced. I decided to keep her on a less restrictive diet until we can get lab tests done to confirm problems. She doesn't have GI problems though- her issues are behavioral, and potentially growth related (that or she's just genetically short and "not skinny.")

I didn't want to put DD on a more restrictive diet than needed, and I knew there was no way she'd stick to it if I don't have concrete proof that she needs it. Nor do I want her to be fed gluten in an institutional setting (say, hospitalization for something unrelated) because there's no concrete medical proof that she needs to avoid gluten. That's actually a fear of my own, as none of my food allergies/sensitivities have been documented by any medical professional.

Your child clearly benefitted from the GF diet and clearly reacted to the re-introduction of gluten. I see absolutely no reason to feed her gluten anymore, and I'm sure she's aware of the need to stay GF as well. IMO, the only question left is whether or not you want to have lab tests confirming this while she still has enough gluten in her system to avoid false negatives.

Can you get her dr to diagnose her with Celiac disease based on her dietary response alone? That would be the best option all around- official medical confirmation without subjecting her to any more tests.

For yourself, you might want to look into low-carb eating. It's a good way to keep weight under control without needing to count calories. Instead of replacing wheat products with GF flour alternatives, cut back on grains altogether. Or make a GF meal for the whole family and serve rice or quinoa on the side, rather than making meals with the grains mixed in.

I do suggest keeping GF grain products on hand for your DD, especially snack foods like tortilla chips, rice cakes, GF cookies, and the occasional GF cake. But you need to balance her need to eat lots of food and gain weight (since she's been undereating for a long time) with the need to instill her with healthy eating habits. Remember that she's been missing out on nutrients besides calories. Encourage her to have extra portions of meat, eggs, veggies, fruits, nuts, etc, and keep sweets as treats- something to eat in moderation after filing up on healthy stuff. She's likely to gain lots of weight quickly and then level off at a "normal weight" if she does this.

 

[JaneS]

Check out Enterolab's testing. The article on their site "Before the Villi are Gone" is extremely important. There might come a time when you need tests to prove it to her too. Also my holistic dietician is talking about new saliva testing which is showing promise, remind me if I don't post about it in coming week.