Frustrated - Help Please

[Jules]

Can anyone tell me how long it takes for kids to show signs of improvement.

My 2 year old was diagnosed as having celiac disease in May of 08. She did not test positive in the blood workup but the drs say she showed the early warning stages in her biopsy. We have been working on a gluten free diet (when she does eat something) she is being supported by a G tube really, for almost 6 months and they did another biopsy and I am awaiting the results. My Drs said it could take up to 1 year to see changes. My big question is if she is barely eating (for unknown reasons she stopped in April 08) and what she does eat is gluten free shouldn't we see healing taking place. She never had any of the normal gluten symptoms that I see here. She did not sleep through the night and would fussy in her sleep, she was gaining weight, did not have an extended belly, pooped every day but usually hard. SO with all this said I am still questing her diagnosis........

Thanks for any help anyone can give me.

Bonnie

[DanaDee]

Can anyone tell me how long it takes for kids to show signs of improvement.

My 2 year old was diagnosed as having celiac disease in May of 08. She did not test positive in the blood workup but the drs say she showed the early warning stages in her biopsy. We have been working on a gluten free diet (when she does eat something) she is being supported by a G tube really, for almost 6 months and they did another biopsy and I am awaiting the results. My Drs said it could take up to 1 year to see changes. My big question is if she is barely eating (for unknown reasons she stopped in April 08) and what she does eat is gluten free shouldn't we see healing taking place. She never had any of the normal gluten symptoms that I see here. She did not sleep through the night and would fussy in her sleep, she was gaining weight, did not have an extended belly, pooped every day but usually hard. SO with all this said I am still questing her diagnosis........

Thanks for any help anyone can give me.

Bonnie

I'm sure every kid is different, we had Diag in May 2008 on my then 2 year old, that WEEK she slept through the night without waking up sceaming for the first time in a year, and has slept through each night since. That WEEK her temper/disposition switched like someone flipped a switch. It took about a month to get the runny bowels under control.

My Father in law was older and the disease took a huge health toll on him, it took him several months to get back to decent health, and he discovered in the process with his celiac disease it wasn't just the gluten, there were other food intolerances. He had lost a gall bladdder and they radiated his thyroid and he lost a huge amount of weight before they figured out what was wrong.

[MarsupialMama]

For us it took 3 weeks before we noticed any changes in our daughter. Then we got improvements in appetite, sleep patterns, and attitude adjustments. She is gaining weight very slowly (I wish it was faster!!!!) but at least it is gain and not loss. We started the diet about 3 1/2 months ago.

To answer your question, we saw improvements, but not as quickly as everybody else that I've talked to seems to see them. Your daughter, in my opinion, could have a very delicate system, since she is on a feeding tube. That really puts a stress on the body since it is not the normal way of digestion (though some things are definitely necessarY!!), so keep in mind that her changes may be slower when compared to other children. She has been through a lot. With my two children (both celiac), one will rebound from a sickness or wound overnight, while it will take the more delicate one a week or more to get over the same thing. Our constitutions are all different. Growing up my siblings would bounce back fast, while I would shrivel up and take weeks to pull back together. Healing can be very fast or it can be very slow.

Listen to your "mommy radar" and if you feel that something is just not right, listen to it. Otherwise try to give her as much time as she needs for recovery. I know it is the hardest thing in the world to be in that "waiting period" (I felt like I was going crazy!!! Some days I still do....). Just try to give your little one plenty of hugs and smiles.......those seem to help healing in ways words can't describe.

[MarsupialMama]

One more thing: Some celiacs do not show the typical symptoms. My older daughter did not have any symptoms that I was aware of. She did have a large belly for her size, but she LOVED to eat, so we just figured it was from liking to eat a lot and having a full belly. We put her on a gluten-free diet when we put our second daughter on it (who was failing to thrive), just to make meal preps easier. Well, I wouldn't have ever thought, but her tummy disappeared in a few months!! I would never have thought it was related to gluten of all things, and would never have thought she has any health issues because she is a solid, energetic child that you just can't stop! VERY healthy looking. Now when I look at her body I can't believe how much of a change there is!

Just some food for thought about symptoms not always being "easily seen".

[Jules]

Thanks all for you advice. It is just so hard to sit by and watch and feel like I cannot do to much to help her. Her GI wants to put her in a behavioral eating program that force feeds and I am not on board with that so we are just going to try to help her as much as possible and see where we go from here as she is gaining weight and growing and looks healthy but it really is thanks to the feeding tube.

Bonnie

[swalker]

Can anyone tell me how long it takes for kids to show signs of improvement.

My 2 year old was diagnosed as having celiac disease in May of 08. She did not test positive in the blood workup but the drs say she showed the early warning stages in her biopsy. We have been working on a gluten free diet (when she does eat something) she is being supported by a G tube really, for almost 6 months and they did another biopsy and I am awaiting the results. My Drs said it could take up to 1 year to see changes. My big question is if she is barely eating (for unknown reasons she stopped in April 08) and what she does eat is gluten free shouldn't we see healing taking place. She never had any of the normal gluten symptoms that I see here. She did not sleep through the night and would fussy in her sleep, she was gaining weight, did not have an extended belly, pooped every day but usually hard. SO with all this said I am still questing her diagnosis........

Thanks for any help anyone can give me.

Bonnie

She ate fine then stopped?

[wsieving]

I would be leary of them "force feeding" her also. Of course I'm not a doctor, but I would think if, and I mean IF, it did work, couldn't that cause her to develop an OVER eating problem? I would think that would be along the same lines as "you must clean your plate before you leave the table." KWIM?

My DD didn't eat either. We felt like we were force feeding her all of her life until she was gluten free. Really, we weren't, but we were always offering her something hoping to get her to eat. After going gluten free her appetite picked up. But in the beginning, first couple of weeks, she would only eat a lot of certain things. I do not think she fully "trusted" food yet. So we fed her a lot of the things that she would eat like grapes, apples, diced turkey... practically what she lived on up until the last week or so. Now that she is starting to trust food a little more she is more open to eating other things. I don't know if that helps you or not.

I sure hope your little one starts showing improvement. Sounds like she's having quite a hard time. Could it be that the GI tube is keeping her full so that she doesn't desire to eat? Keep us updated!

[swalker]

Two of my sisters and my daughter all had terrible appetites. Turns out, now that we're investigating food intolerances in the next generation, that it was most likely milk that was badly affecting all of them.

We were having trouble getting my four year old Grandson to eat anything but yogurt, cottage cheese and milk just like his mom and aunts so we took him off all milk products and his appetite if fine now. His behaviour improved dramatically as well, no more meltdowns.

I wouldn't recommend force feeding either. I'd just offer her bits of food she can eat herself often. And try fun foods like popsicles.

[climbmtwhitney]

We have been working on a gluten free diet (when she does eat something) she is being supported by a G tube really, for almost 6 months"

Hi Bonnie,

This may be a crazy question, but CAN she eat? She was about 18 months when you put in the G tube, right? I am wondering if eating was painful for her. I ask because I suffer from gastroparesis (paralyzed stomach) occasionally. At my worst I was terribly sick for 9 months and eating hurt. After the smallest amount I would be in pain. I couldn't eat. I didn't vomit (only rarely), but I felt like I needed to all the time. Just wondering if the doctors did a stomach motility test? My gastroparesis is in remission again since going gluten-free 2 months ago (recently diagnosed Celiac). It's just a thought. But, even if it were the case, you might not know if she's better now because the feeding tube could be taking away her appetite like the other poster mentioned.

I hope she feels better soon. My daughter, 10, was also just diagnosed. So, I know how hard it is to see your little one hurting. She's miraculously better now and we're so thankful. Hopefully your daughter will turn the corner soon too. BTW, my daughter also ate like a bird pre-diagnosis (no motility issues) and that cleared up about 4 weeks after going gluten-free.

Best,

Sonya

[Jules]

Thanks all

She was a good eater and just stopped one day like someone flipped a light switch. That is what bother us most. Our GI thinks like some of you it just hurts to eat so she stopped and she will start when she is ready again. I too worry about her not being hungry while using the feeding tube but the drs do not want to stop it until she eats enough at each meal to support herself. She really does not have many signs of celiac disease at all - only the fussy part and not sleeping well......

I just want my little girl to eat normal again and not be in pain.

Thanks again. I will talk to the drs about the stomach thing you said. Also she is going for food allergy testing on Thursday.

Bonnie

[April in KC]

Bonnie - couple of questions...in her G-tube, is she taking an elemental formula like Neocate, or is she given something like Pediasure that contains some whole food proteins that might cause a reaction in some kids? (Just to be clear, pediasure does not contain gluten but does contain milk and soy proteins, which could cause problems for some). Has she been scoped again to see if there is an improvement in her GI tissues?

There are other GI conditions besides Celiac...I understand wanting to know for certain what she has. One of my kids has both Celiac and Eosinophilic Gastroenteritis, a similar condition that does not cause villous atrophy but does cause mast cell degranulation and malabsorption - and it has multiple food triggers (not just gluten).

[Jules]

Bonnie - couple of questions...in her G-tube, is she taking an elemental formula like Neocate, or is she given something like Pediasure that contains some whole food proteins that might cause a reaction in some kids? (Just to be clear, pediasure does not contain gluten but does contain milk and soy proteins, which could cause problems for some). Has she been scoped again to see if there is an improvement in her GI tissues?

There are other GI conditions besides Celiac...I understand wanting to know for certain what she has. One of my kids has both Celiac and Eosinophilic Gastroenteritis, a similar condition that does not cause villous atrophy but does cause mast cell degranulation and malabsorption - and it has multiple food triggers (not just gluten).

April

Thanks - She does get Pediasure in her G tube. WE have scoped again and there has been no change. I call today for the results from the one done after 6 month so we shall see and we go to an allergist on Thursday for testing for other things as her dad has food allergies.

[April in KC]

If she has been gluten free for some time (few months at least) and there's no change, it would certainly make me wonder about soy and/or milk, since she is getting them all the time. Also corn. I don't have Pediasure in the house to check the label, but I believe it has some combination of proteins from milk/soy/corn.

Since she already has a tube, it would be easy to switch her over to elemental formula such as Neocate or Elecare, just to see if that heals her up. The difference between these formulas and others is that the food proteins in Neocate and Elecare have been completely broken down to amino acids...there are no proteins to react to. (Note that corn, etc. will still be listed on the ingredient label, but it is not the same once it is broken down.)

Both are designed for kids with extensive allergies or allergies that are hard to nail down. Both are expensive, but should be covered by insurance as long as she receives her nutrition through tube feeding. I give my youngest Neocate in a bottle/sippy cup, but it is not covered by insurance in our state because he does not have a tube and is able to drink it by mouth...also he eats other foods that he tolerates.

If you're able to nail down the culprit(s) through allergy testing, then great. It may be possible to continue tube feeding her an appropriate formula until she is healed enough to want to eat again.

If possible, get a broad panel of allergy tests - try to get both blood tests and skin prick tests, if they will allow you to do both. Also, you might ask if it's possible for someone can have her biopsy slides read again and have eosinophils (pronounced EE-o-sin-o-phils) counted, looking for signs of eosinophilic esophagitis, eos. gastroenteritis, or eos. colitis. If there are more than a certain number of eosinophils per high powered field on the biopsy slide, then she has the associated condition. In the case of eosinophilic disorders, even small allergy test positives can be very significant and can be a major trigger for GI pain. It's a little different than the typical hives allergy reaction, but it can occur in the same families where food allergies are present.

Did she ever have any hives or throwing up before this started? Did she have diarhhea or loose stools?

A good resource for researching these eos. conditions is www.apfed.com.

When you go to an allergist's and get a RAST test, they might present the results as 15 kU/DL (or any number ranging from 0.25 - 100.00 kU/DL. Depending on what the number is, they may assign a "class" of allergy...i.e. Class 1 is lowest, Class 6 is highest. My oldest son is Class 6 for peanut and has hives and anaphylactic reactions; however he is just class 2 for a couple of foods that give him significant GI reactions but no hives.

I think the Celiac angle is also really important to follow up on. There is nothing wrong with withholding gluten--it is a very healthy diet choice and is absolutely essential to her health if she does have Celiac disease.

Have you considered getting a genetic test done to determine if she has the basic genetics necessary to have Celiac Disease? This would be HLA-DQ2 or HLA-DQ8.

It's possible to have multiple GI conditions in one kid. My oldest has Celiac and also has eosinophilic gastroenteritis, with food allergies to peanuts, pork, soy and oranges. He eats a varied but strict diet that includes variations on normal kid favorites...so it's doable even if a bit overwhelming at first.

Good luck! Sorry she's not doing well - it just breaks your heart and you want to do anything you can. PM me if you end up having questions about any of this...

April