Help Me Help My Child!

[Melmelsmom]

Ok I don't know where to start....but the run down goes like this my daughter was diagnosed with Celiac in July of this year after being real sick for over a year with it coming to a head in May of this year when her weight just started droping and she went from being a 7th grader who weighed 82lbs to one that weighs 62lbs and went from a size 12 to a size 8 waist.

Her symptoms were always mostly bad nausea and stomach pain....not too much diahrrea (SP?)...her stomach pain would hurt so bad that sometimes she would come running to me crying with fear on her face like you would not believe and asking me if she was dying and telling me that it sure felt like she was.

So here is the deal she has been on this diet and we have been real good about it and not messed up except for a couple times in the first couple weeks of the diet back in July....well she continues to feel bad and have really bad days missing alot of school and going back and forth to Childrens Hospital to see her DR.

Well her Dr thought that maybe she was getting gluten some way and we did not knwo it so he ran some blood test on her about 6 weeks ago to check her levels for Celiac and when he got the results back they came out that they have gone way down so he ruled out the possibility that she was getting gluten but still had us meet once again with the Dietician (SP?) to speak about the foods she was eating and that went well also.

My daughter also had lost a couple more pounds so he was worried about that as well.

Here is the problem I am having and I am thinking I am starting to lose it because I thougth I was doing well but now I think I am losing my mind.

My daughter is still very sick and cries very often if not every day. She always comes to our room every night to sleep because she is terrified of how she feels. She tells me it is getting real bad again and on several occasions has come to me in tears and tells me that she feels like she is dying!!!!

I don't know what to do for her......I don't know if there could be something else wrong.

Her DR wants to to a repeat Endoscopy/Colonoscopy..........but I wonder is that the right thing to do???

I do not know which way is up and which way is down and I am starting to find myself slipping into depression over this while trying to hide my emotion from her because the last thing she needs right now is to see me this way.

She came to me yesterday crying and asked me if she was a burden on me and if I was getting tired of taking care of her and seeing her sick all the time.......I have never showed my emotions infront of her regarding this so I do not know why she would ask me that but I can say it really tore me up......I just want my happy child back again and I want to see her feeling good.

I really needed to vent because I think the Drs are thinking I am crazy now because I keep telling them that she is not feeling better most of the time.

Oh and another thing that kind of makes me angry is that they want her to take meds for her nausea and take some thing to relax her as well and my daughter does not want to take these things because she hates the way they make her feel and I also feel that they should not be shoving all these things down my daughter as if to try to mask what she is feeling and going through.....shouldn't they find a solution and fix it rather than try to cover it up???

Anyhow thanks for any input or help in advance.

Oh and sorry for any typos or mis spells but I had to rush this before my daugther got out of the shower because once she is out she will be by my side because of how she is feeling.

Oh and another thing I forgot to mention is that I can't really get her to eat that much because she says it makes her feel even worse when she does eat.

She is also doing the no lactose diet as well incase that helps with any thoughts or ideas you may want to put out.

Thanks again Melmelsmom

[Yellow Rose]

It can be very frustrating working with Dr.'s who think they know better than the parents what's wrong or not wrong with our children. My child came within days of dying from a stroke because the Dr's thought her headache that had gone on for a month was all in her mind. They told me to check her into a psyc ward.

Have you tried keeping a food diary to see what else beside milk she is reacting to. I have improved since starting the gluten free lifestyle but not as much as expected. I am finding that corn, soy, rice, milk, and nightshades make me feel horrible. Try going as natural as possible fruits, veggies, broiled or baked meats with only olive oil and sea salt for seasonings and see if that helps to clear her up. If she improves then add other foods slowly back into her diet. Not more than 1 new food for a couple of days to see if she will react. Some people take several days to react to food. Check her meds for gluten or the other things she reacts to as well. Keep us posted on how she is doing. I will be praying for her and for you.

Yellow Rose

[buffettbride]

I agree with keeping a food diary to help identify any other suspect foods.

Perhaps talk with your doctor about the possibility of refractory sprue? That is when Celiac Disease does not respond to the gluten-free diet. I think there's one or two folks around here who have the refractory version.

I wish you and your daughter the best in a healthy recovery.

[Ridgewalker]

Melmelsmom, I was JUST thinking about you this morning. I dropped my son off at school, and your post popped into my head about how hard it is to drop your daughter off in the mornings... seeing her so fragile compared to the other kids. I remembered that and wondered how your daughter is doing.

I am so sorry she's still so unwell. My heart goes out to you.

Kids are going to pick up on our feelings, no matter how hard we try to hide it. But they're not always going to interpret them correctly. She's picking up on your intense unhappiness, and knows it's about her. That's all it takes for her to jump to the "burden" conclusion, even though that's not at all how you feel!

Explain your feelings to her as much as you're able to... How you're sad for her, and want to make her better. I know you don't want to dump your sorrow on her, but sometimes you have to share it. If you hide your feelings ALL the time, she has no choice but to start guessing.

Yellow Rose's suggestion of a food diary is excellent. I'd like to suggest a strict elimination diet. This is similar to what she suggested as well. The following is a good, structured method:

1) Remove all likely suspects at once. This would include ALL dairy, soy, maybe grains, nightshades. Think about it and make a list.

2) Wait till she is feeling better. You want 10 symptom-free days in a row. If you cannot achieve this, try removing a few more foods. This may take some time.

3) Reintroduce ONE food.

4) Wait 5 days. If she has not reacted in 5 days, the food may be considered safe. If she does react, ban the food.

5) If she reacts to the first reintroduced food, wait again until she has had 10 symptom-free days in a row.

6) Reintroduce another food.

It doesn't sound like your doctors are being much help. What do they have to say about her weight loss? I remember that the weight loss is initially what got the doctor to take her case seriously. But I would think she should have gained by now.

As a reference, your daughter now weighs only 17 pounds more than my 4 year old son. Is there a non-dairy protein/nutrient shake that she might be able to tolerate? Have you tried any on her yet? Maybe an egg white protein powder, no dairy or soy? Supposedly, it's tasteless and has no odor. Maybe mix it with some pureed fruit and ice...

Have the doctors done blood draws to check for vitamin deficiencies, anemia, etc?

Maybe the repeat scopes aren't a bad idea, to check for any other problems she may have on top of the Celiac. Meanwhile, you can do the elimination diet.

I will keep thinking...

(((Hugs!!!)))

[taweavmo3]

Oh, I wish I could help you!!!! I don't have alot of useful ideas, but lots of hugs coming your way. Your poor daughter. I think the food diary is a good idea, maybe there is some other food making her react as well. I know you said she is already lactose free...is she completely casein free? That was a biggie for my little girl. Soy is another common culprit, soy actually gives me and my daughter terrible stomach pain. We can tolerate small amounts of soy, such as soybean oil, but anything more than that is too much.

I too would stay off the nausea and psych meds......that seems awfully risky for a teenager. Have you gone over absolutely everything she uses???? Even things like shampoo, lotion (alot of lotions have oats) lipstick or lip balm have gluten in them. Or what about something at school contaminating her??? Even though the levels in her blood test were low, she could still be getting small amounts of gluten contamination from somewhere. I would go over absolutely everything she uses, eats, and does at school. I hope you find some answers soon, good luck!

[loraleena]

I am so sorry you both are going through this. One thing stood out to me. You said that she is lactose free. You should remove all forms of dairy so that she is not getting casein (another milk protien that some can't tolerate). It can still be present in lactose soy products so read labels carefully. I would avoid soy as well. Also, I would get her checked for small bowel bacteria, candida overgrowth and parasites. Her damaged gut sets her up for these things. Good luck and I will send you good thoughts.

[Melmelsmom]

WOW!!! Thanks so much for the large amounts of support andhelpful tips!! I am so touched that some of you remember me and my daughter even though it has been awhile since I have posted!!!

As far as the tips go I should add that the DR had us doing a food journel and then he had us try a food elimination test that some of you are telling me to give a try where we eliminated may things and did all natural we eliminated things like fructose and surcose as well for some time along with the other things and still no luck.

I am glad to hear someone say and agree that I should not put her on those meds for nausea and anxiety....I felt the same way about that very strong in my heart because I just felt like it was a way to mask the problem rather than identify it and address it and that really bothered me

The DR also had her try some sort of shake drink that is RX only that was supposed to help put on some weight.

OH i do have a question one of you and I am sorry with all the post I am forgetting who said what but someone mentioned Refractoy Sprue??? What is that and how do they find out about that????

I take her to see the specialist tomorrow so if anyone can give me a little heads up or even some ideas of new things I should be asking the DR about that would be great.

Once again I am touched with all the response I have received so far it means so much to me that others would take the time out to lend and ear and then a thought.

Blessings to you all and I will keep you updated on what takes place.

Oh one more thing I should mention that when my daughter expressed her feelings to me and asked me if she was a burden I did tell of course not and that it was not that at all. I let her know that I just watned to see her feel better and that sometimes I feel very helpless because I can't have control over this part of her life and it is very hard for mothers to see their children hurting and not be able to take that hurt away......so I think she really understood me when I shared that with her and felt a little better for now.

Blessings

Melmelsmom

[mommida]

Everyone has given many of the ideas I had when first reading your post.

Vitamin B defiencies can lead to severe anxiaty and loss of appetite. Can you ask about vitamin defiencies at your next appointment?

We are all here for support and information sharing.

Laura

[mamaw]

Everyone has posted great thoughts & ideas... Has she been checked out for Crohn's yet? My neighbor's daughter has very similar bouts & she just got dx'd with crohns..

I will pray for you & yours daily for an answer..

blessings

mamaw

[buffettbride]

Everyone has posted great thoughts & ideas... Has she been checked out for Crohn's yet? My neighbor's daughter has very similar bouts & she just got dx'd with crohns..

I will pray for you & yours daily for an answer..

blessings

mamaw

That is a good point. As if Celiac wasn't enough, one of the gal's in the CO Cel-Kids group has both Crohn's and Celiac.

[ravenwoodglass]

Everyone has given many of the ideas I had when first reading your post.

Vitamin B defiencies can lead to severe anxiaty and loss of appetite. Can you ask about vitamin defiencies at your next appointment?

We are all here for support and information sharing.

Laura

This is a very good point. I would suggest getting her onto a B12 sublingual supplement. That may help a bit. You have already gotten some great advice. Do check into the possiblity that she may be getting CC'd by stuff at school, does she have an art class that would be one of the most likely places. Also do you have any pets? If so please check their food and make sure it is gluten-free. Otherwise they could be glutening her with their kisses as well as if she feeds them. If your whole house is not gluten-free, even your toiletries etc, I would consider making it so until she is better. Even a small amount of inadvertant CC can keep things going. I hope she gets some relief soon, and I also do not think a repeat endo/colonoscopy would be a bad idea if this continues. Refactory sprue is when people do not heal on a gluten free diet. It is quite rare, usually if the villi are still being damaged it is because of CC or accidental glutenings.

[sillyactsue]

Often when a product says it is non-dairy it has casien in it. In the ingredients it might say casienate (I think that is the right spelling).

Also, something that I have found helpful with my daughter. We take Wet Ones wipes everywhere we go. Don't get the alcohol free. We constantly wash our hands with them when we get back in our car or before we eat. Gluten is alcohol soluble. I didn't know if it was making a difference or not but we kept doing it. A few weeks ago my daughter and I both had symptoms of being glutened but I wasn't doing anything different. After about a week my other daughter got in the car with us. She noticed that the wipes were alcohol free! After quickly correcting that blunder and continuing with our regular

routine the symptoms started going away. Maybe if your daughter took some to school ( they come in packets as well as the cylinder container) it would be easier for her to be on top of it. Not saying she isn't, just a suggestion, just in case. good luck, I will be looking for updates on how she is doing.