Trouble Dealing With New Diagnosis

[Charlotte's Mom]

My daughter has been diagnosed with Celiac. She had an intestinal e-coli infection in June, & has had trouble with diarrea since. We took her to a gastro Dr & he did blood work, & wanted to do an endoscopy. We said no, for a couple of reasons. Partly because after reading on forums like this I see that not everyone gets it done. And because my daughter has other health problems, and I'd like to avoid any chance of complications. Yeah, the endo is fairly safe, for normal people, but she's not normal.

So we are just dealing with the pediatrician now, gastro dr dismissed us because we said no to the endoscopy.

Pediatrician repeated the celiac panel, & did several other blood tests too. He ordered iron, hemoglobin, and several things I forgot. The celiac panel came back 3 of 4 positive for celiac. All the other blood work came back normal. He thinks she might have IGA deficiency, but probably it's just celiac.

OK, so we are folowwing his advice & restrictiong her diet. Yet she is not getting better. She's having more diarrea, & accidents. Before we restricted her diet, at least she wasn't having accidents, it was controllable.

I'm pretty frustrated. I admit having trouble accepting the diagnosis, but we are restricting her diet in the hopes of seeing an improvement. Yet we are seeing the opposite. Don't know what to do anymore.

[celiacgirls]

Welcome to the board. You will find a lot of information and support here.

First of all, how old is your daughter? How long has she been gluten-free?

Are you sure you are 100% gluten free? I ask because before I went gluten-free myself, I would never have believed a tiny bit of gluten could have such an effect. My daughter was gluten free before me and I assumed that since she was eating food that was supposed to be gluten-free, it was. This is especially a problem in restaurants. Since I am now gluten-free, I do have symptoms such as stomach pain and D if I get even a tiny bit of gluten due to cc. I never had that before. Possibly, she is reacting more strongly to whatever gluten she might be getting.

Did she show any improvement on the diet when you first started?

[AndreaB]

Like the previous poster said. Check that everything is gluten free including personal care products. Cross contamination can be a big issue as well.

After being totally gluten free for awhile you should see some improvement. She may have other intolerances like dairy or soy. Those seem to be the top "other" intolerances that go along with gluten.

[chrissy]

didn't either doctor do a total IgA serum? what tests did they do, and which ones came back positive?

[Charlotte's Mom]

Hi, Charlotte is 19. But she has cerebral palsy and a rare kidney disorder and is retarded, physically she looks like a 12 year old.

Um, no, I'm not sure she's 100% gluten-free. I'm really trying & I think she has been gluten-free since just before Thanksgiving when they let her eat forbidden things at the school Thanksgiving celebration. We were restricting what she ate at home before that. I did not notice any reaction at all to the Thanksgiving meal.

I have since gone to her school, talked to the teacher & the aide to clarify & emphasize the importance of her diet restrictions.

I really have NOT seen any improvement at all. Her diarrea is either the same as it was before diagnosis, or sometimes worse.

We give her acidophilous & that has been improving her symptoms so that she doesn't have accidents for about 2 months. But now that we are following the diet, she is having accidents a couple of times a week.

So although I am trying to accept this diagnosis, & I am seriously following the gluten-free diet, the part of me that doesn't want to accept the diagnosis is not going away because I saw no reaction to the Thanksgiving meal at school & I see no benefits from the gluten-free diet.

Welcome to the board. You will find a lot of information and support here.

First of all, how old is your daughter? How long has she been gluten-free?

Are you sure you are 100% gluten free? I ask because before I went gluten-free myself, I would never have believed a tiny bit of gluten could have such an effect. My daughter was gluten free before me and I assumed that since she was eating food that was supposed to be gluten-free, it was. This is especially a problem in restaurants. Since I am now gluten-free, I do have symptoms such as stomach pain and D if I get even a tiny bit of gluten due to cc. I never had that before. Possibly, she is reacting more strongly to whatever gluten she might be getting.

Did she show any improvement on the diet when you first started?

[CarlaB]

If she's eating food the school prepares, I would say that is the problem. It is so hard to eat gluten-free at home, I would suspect it would be impossible to eat that way at school. My daughter packs her lunches.

If she's getting a small amount of gluten, it could make her d worse than when she was getting a large amount of it. That's what happens to me. I became more sensitive to it when I got off it. It's like my body tries to eliminate it right away now that it's not getting it all the time.

[SchnauzerMom]

Even though she didn't react right away to the Thanksgiving meal she may be reacting to it now.

[Charlotte's Mom]

Personal care products too !!!

Well, we use Tom's natural toothpaste & that's gluten-free. But what else do you mean?

No, no no, can't be dairy too, just can't.

AARRRGH, I don't think I can do this.

Like the previous poster said. Check that everything is gluten free including personal care products. Cross contamination can be a big issue as well.

After being totally gluten free for awhile you should see some improvement. She may have other intolerances like dairy or soy. Those seem to be the top "other" intolerances that go along with gluten.

[CarlaB]

Shampoo, conditioner, body lotion, lip balm, etc. Everything can get in your mouth, you get it on our hand, then eat. It would be especially bad if your daughter puts her hands in her mouth.

My husband even makes sure all his personal care products are gluten-free.

[Charlotte's Mom]

I don't know what the gastro dr did, he didn't want to give us specific details.

Another reason we didn't like him.

The pediatrician told me about 4 tests, 3 were positive for celiac, one normal. I don't know where I put my notes on the tests, need to get better organized. And then he said that one could mean an IGA deficiency. I don't know if they did a total IgA serum on her. I can ask the pediatrician. At least he answers my questions.

didn't either doctor do a total IgA serum? what tests did they do, and

which ones came back positive?

[GFBetsy]

You CAN do this. It's overwhelming at first, but this is doable.

Start by making a list of all the gluten free things you already eat. Meat, potatoes, veggies, etc. Then make a menu list - breakfast, lunch, and dinner for 2 weeks or so. Also include some snacks (apples and cheese, etc.)

Also, could it be possible that your daughter is eating gluten on her own? My daughter (who is only 2) gets into gluten-containing products every once in a while, no matter how hard I try to keep them out of reach. So it is possible that your daughter is grabbing cookies or something that you don't think she's eating. Does that make sense?

for some recipe ideas (dinner, especially) try the book "Saving Dinner" by Leanne Ely. It's great.

good luck!

[Charlotte's Mom]

At school for lunch she gets french fries & 2 hamburger patties & milk.

What do you pack for lunch?

If she's eating food the school prepares, I would say that is the problem. It is so hard to eat gluten-free at home, I would suspect it would be impossible to eat that way at school. My daughter packs her lunches.

If she's getting a small amount of gluten, it could make her d worse than when she was getting a large amount of it. That's what happens to me. I became more sensitive to it when I got off it. It's like my body tries to eliminate it right away now that it's not getting it all the time.

[Pink-Bunny]

Is it just the french fries that are made in the fryer? or is other stuff like chicken nuggets and such. because that could be your cross contamination problem.

Sorry I can't help with ideas for lunch. I usually just make rice and put some time of veggies in it. Or salsa and chips.

[CarlaB]

At school for lunch she gets french fries & 2 hamburger patties & milk.

What do you pack for lunch?

If they also fry batter coated foods in the oil, it's contaminated. Also, are you sure they are not getting even a crumb of a bun on her burger? Could they have touched the bread, then served her? That is what I mean ... the lunch can seem safe, but it all depends on the preparation.

My daughter is 13 and packs her own lunch -- I buy her gluten-free bread, peanut butter, jelly, chips, Lara Bars, Bumblebars, fruit, juice, celery, etc. She is also free to take leftovers, but rarely does.

[Charlotte's Mom]

I want to thank all of you for responding.

I'll have to check on the french fries cooking method. Charlotte has lost weight. She was 102 lbs before she got sick, went down to 91, went up to 96, then down 2 lbs to 94 I hope she can eat the fries, cuz she likes them & needs to gain weight.

Fortunately Charlotte does not put her hands in her mouth, not at all, never did. And she does not get food from the kitchen. She will eat things on the table, but that's our way of giving her snacks. She does not like or eat cookies, cake or candy. She likes salty snacks, potato chips or corn chips & salsa for example. But she only eats what we offer her.

My husband & I have coped with the cerebral palsy, the retardation, and the rare kidney disease well I think. She was diagnosed with Bartter Syndrome the weekend Princess Diana died. I remember going to the hospital parent lounge & seeing it on TV, I was so tired & disoriented I couldn't grasp what they were saying about Diana.

But I am just feeling so bad about this additional problem. I just don't want this to be real on top of everything else she has.

Charlotte is so beautiful, and so incredibly good natured. She shouldn't have to have this too. I made a website about her & the kidney disorder a couple of years ago. It's Open Original Shared Link Don't read the whole thing, it's too long. But you can see her picture there. Also she learned to swim despite all the obstacles, here's pictures of her in the pool

Open Original Shared Link

I know, I can do this. But I don't want to. And part of me still thinks maybe it's not celiac, maybe it's something else. I have to quit for now, I'm on the verge of crying. I'll be back tomorrow.

[CarlaB]

Hang in there, Mom, this is sooo much easier than all you've done already. Now that I've learned the changes, I have replaced literally EVERYTHING I like to eat! There is nothing I can't have, unless I'm not home. It's not a bad sentence, and maybe it will help some of her other symptoms diminish as she heals from it.

Don't worry about her weight too much at this point, it will come back as she heals.

She reminds me so much of a girl I see at our local community center who comes in a wheelchair. I don't know who the lady is who brings her, but today she was there and had such a pretty, happy face watching the Price is Right. She also goes around the running track in her electric wheelchair. I'm sure your daughter is happy like this young girl. A change in diet won't change that.

[AndreaB]

Hugs.

It will get easier as you get used to the diet. Naturally gluten free is pretty easy, meats, fruit, veggies, rice, potatoes. There are a lot of gluten free stuff that is pretty good to buy, or you can make stuff yourself.

As Carla said, don't worry about the weight right now. As she heals (and is gluten free) she will gain back weight.

[Guest nini]

you can do this... dairy MAY be a problem at least temporarily. I had to eliminate dairy for about 6 months right after my diagnosis.

[Charlotte's Mom]

OK, I'm feeling a bit better about this now. Nothing good has happened since I last posted to make me feel better, I'm just reaching a state of acceptance.

She still needs the probiotics to avoid having accidents. We ran out about a week ago and she had 2 accidents within 24 hours before we made it back to the health food store for another bottle.

We continue to follow a gluten free diet, and I still see no benefit from it. We bought a gluten-free pizza crust & made her a traditional pizza, it was pretty bad and she didn't eat much of it.

I caught hubby offering her a cookie on Christmas day & said "WHAT ARE YOU DOING ! ! ! "

He said "OH". Today he went grocery shopping & got fish at the deli counter coated with cocanut, papaya and mango. I looked at it & asked if there was flour in it & he said "Oh, I forgot about that". :angry: We called the store & asked, but the clerk didn't know and just told us to not take a chance.

We went to see her nephrologist today & her weight was down to 91.5 <SIGH>

Assuming she really has celiac, how long will it take for her symptoms to improve? What else can I do?

[shayesmom]

Assuming she really has celiac, how long will it take for her symptoms to improve? What else can I do?

It could take days, months...even a couple of years. It just depends on the individual and if you're dealing with a gluten intolerance only....or possibly multiple food sensitivities.

Having 3 out of 4 blood tests that are positive for Celiac is a pretty big indicator that Celiac is indeed the issue. My dd was negative on her blood tests and I still did the diet to see if it would help. We noticed a difference within the first 24 hours (my dd was 15 months at the time and is 3 1/2 now). I can tell you that we went through phases of doing well then not well. And dd began reacting to trace amounts of gluten after a few short weeks which was surprising at the time. As their system clears, the reactions to even minimal amounts become stronger and more pronounced. It's a blessing and a curse at times. A curse for the obvious reasons, but a blessing because it's usually pretty easy to locate the source of glutening.

As for other things that you can do...double-check EVERYTHING to make sure Charlotte really is gluten-free. Make sure that the school staff knows about cross contamination and that if Charlotte eats off of shared tables, that they are properly wiped down before she eats. And whoever prepares her food should be sure that their hands are clean prior to touching her food. No shared countertops, toasters, cutting boards, cookware or bakeware. I personally would send her food in and give them a very short list of snacks that are okay just to be safe. You will never know if she is completely gluten-free as long as someone else is cooking or preparing meals for her.

If after checking all this again she is still getting reactions, look seriously into dairy and soy as a potential culprit. My dd reacts to both of these and then eggs, food colorings and artificial sweeteners as well....oh yes....it CAN get convoluted.

Unfortunately, with this disease, there is no quick learning curve. We all have to take it one step at a time. To retain your sanity, you need to keep things as simple as possible. Start off with very basic meals and snacks and keep it like that until things seem more in control. In the meantime, send out for a subscription to Sully's Living Without magazine to get some new menu and snack ideas. It's an awesome publication and the recipes in it are absolutely incredible. The whole family will enjoy them.

You're doing great with the probiotics as a supplement. You may also want to consider an omega or DHA supplement as well (helps promote healing as well as fills the need for healthy fats....in which Celiac is a disease where good fats are malabsorbed). Make sure all meds and supplements are gluten-free as well.

This all seems really overwhelming at the beginning. And I remember things going well every 2-3 weeks and then something would happen where I'd have a major breakdown for a week at a time. It is very tough to get through those moments but you will....for no other reason than you HAVE to. It does get easier with time. You just have to keep plugging away and eliminate hazards while learning the diet. I found it much easier to deal with by making our entire home gluten-free. Once I learned to cook again....no one objected. I catch my dh eating gluten and dairy-free while away from the house as well. Dh no longer wants to touch dairy...unless on very special occasions. He just feels better without it.

Since Celiac is a genetic disease, you may find that either you or your husband will inadvertently feel a LOT better by going gluten-free. I know that I did. It gave me a whole new appreciation for what food can do to a person. Like you, I grieved for the loss of all those wonderful foods. But eventually, I began seeing it as poison to me and my daughter. Offer me a basket of rolls or a plate with fresh roadkill and I will take my chances with the roadkill! It's all a matter of perspective.....and you need time to gain that. Things WILL get better. You love your dd too much for them not to.