Help With My 8 Year Old!

[Rosie's Mom]

My daughter was biopsy-diagnosed with Celiac Disease in June of '08. She felt great on the gluten-free f diet for about 2 months. She's had an increase in her abdominal pain very similar to that of appendicitis. She's been sent to the ER twice by different pediatrician's in the practice with suspicion of appendicitis! All tests come back normal, but it doesn't end her pain. Diagnosis is: functional abdominal pain. It doesn't help her to function!

They want her to up her Miralax (c is her problem). I feel that she's completely dependent on that and I also think that it adds to her bloated/gas situation.

She's missed an increasing amount of school. She's afraid of felling this badly when not at home. Could this pain be from Celiac? I thought I was doing really well with keeping her gluten free, but perhaps cc is a problem? I thought that Celiac pain was mostly in the upper regions of the abdomen, but her pain fluctuates between her navel area and mostly now in her lower right quadrant.

Any insights would be greatly appreciated!

[dilettantesteph]

Hi, I am sorry that you are having these problems. I had the advantage with my son diagnosed at 10 because I was diagnosed at the same time. When he seemed to be having problems with a food I could try it and if it bothered me too, that was the culprit. Different celiacs have different tolerances for trace amounts of gluten. A lot of foods that we can't eat, a lot of people in my local support group eat just fine. I experience a lot of stomach pain when glutened, especially below the belly button, and often localized like that. Initially I felt great with just the elimination of bread and cereal. As time when on(maybe at about the 2 month period) I seemed to get more sensitive to gluten and I had to do more and more research and eliminate more and more hidden and trace amounts. Now I can only eat food prepared in dedicated facilities. If it says processed in a facility that also processes wheat, it will make us both sick. A lot of foods that are labeled gluten free have small amounts of gluten, or even large amounts, see all the posts about Wellshire farms. It seems to me like your 8 year old is also getting more sensitive and you need to be more careful with her diet.

Be careful with contamination at school. You need to pack her lunch, but also watch where she eats. My son's best friend did a lot of spitting while eating and talking. My son started eating by himself at the peanut table (kept clean) and improved tremendously. His friends would come sit with him after they finished eating. The doctor also recommended using his own tray to protect from crumbs left behind on the cafeteria tables.

We got horrible pressure from the principal wanting us to send him in even when he was vomiting. The idiot was convinced that it was school phobia despite the doctors celiac diagnosis. I hope you aren't having problems there. He missed 49 days between getting sick and figuring out the diet.

This year he hasn't missed one day. He has been gluten free 1 year now.

Also watch out for contamination in the classroom. I had them pull his desk away when they were having snacks so that crumbs wouldn't get on his desk. There is so much eating that goes on at school, it is really hard to avoid. There is also the possibility of intentional cheating with all those pizza and donut parties, or friends sharing cookies. I don't know how much she can make the connection between eating gluten and getting sick.

Keep up your determination. This was a really difficult period for us, but now after a year things are so much better.

[Rosie's Mom]

Hi, I am sorry that you are having these problems. I had the advantage with my son diagnosed at 10 because I was diagnosed at the same time. When he seemed to be having problems with a food I could try it and if it bothered me too, that was the culprit. Different celiacs have different tolerances for trace amounts of gluten. A lot of foods that we can't eat, a lot of people in my local support group eat just fine. I experience a lot of stomach pain when glutened, especially below the belly button, and often localized like that. Initially I felt great with just the elimination of bread and cereal. As time when on(maybe at about the 2 month period) I seemed to get more sensitive to gluten and I had to do more and more research and eliminate more and more hidden and trace amounts. Now I can only eat food prepared in dedicated facilities. If it says processed in a facility that also processes wheat, it will make us both sick. A lot of foods that are labeled gluten free have small amounts of gluten, or even large amounts, see all the posts about Wellshire farms. It seems to me like your 8 year old is also getting more sensitive and you need to be more careful with her diet.

Be careful with contamination at school. You need to pack her lunch, but also watch where she eats. My son's best friend did a lot of spitting while eating and talking. My son started eating by himself at the peanut table (kept clean) and improved tremendously. His friends would come sit with him after they finished eating. The doctor also recommended using his own tray to protect from crumbs left behind on the cafeteria tables.

We got horrible pressure from the principal wanting us to send him in even when he was vomiting. The idiot was convinced that it was school phobia despite the doctors celiac diagnosis. I hope you aren't having problems there. He missed 49 days between getting sick and figuring out the diet.

This year he hasn't missed one day. He has been gluten free 1 year now.

Also watch out for contamination in the classroom. I had them pull his desk away when they were having snacks so that crumbs wouldn't get on his desk. There is so much eating that goes on at school, it is really hard to avoid. There is also the possibility of intentional cheating with all those pizza and donut parties, or friends sharing cookies. I don't know how much she can make the connection between eating gluten and getting sick.

Keep up your determination. This was a really difficult period for us, but now after a year things are so much better.

[Rosie's Mom]

Thanks so much for your quick response and feedback!

My husband and I both tested negative, but there are a lot of food allergies in his family and I've been wondering if other food allergies may have come into play since eliminating gluten from her diet.

I'm going to further rearrange everything in our kitchen to assure that there's no or minimal cc.

The school has been very supportive although I know that there is some suspicion on their part of school anxiety or phobia. Of course, I'd be anxious if I felt that miserable and had to think about sitting in school too. Lunch and snacks aren't really a problem because when she's there, I can take her home for lunch everyday if I want (which I do). We also keep some gluten free treats in a ziploc bag for parties, etc.

It's nice to hear that there might be a light at the end of this dark tunnel. I will watch for the dedicated facilities from now on. I have a couple of questions. One doc suggested trying Levsin, an anti-spasmodic for her pain. I've avoided doing so until now, because they initially didn't think it was a good idea and may further slow down her digestion. Has anyone had any success with this or any bad side effects from it?

My second question is how separate should I keep her things in the kitchen? By that, I mean, do you suggest separate plates/utensils/pots and pans? Just trying to figure it all out.

Thanks again!

[Fiddle-Faddle]

You may hate me for this, but I'd suggest that your kitchen be 100% gluten-free.

It's possible that she might be sneaking gluten foods, I know another kid who has such terrible trouble with sneaking food, he was even trading lunches at school and even stealing bits of bread. It's not an emotional problem, it's totally an addiction problem, because the gluten can be so literally addictive (it has an opiate effect on the brain of those who are affected). And this kid would end up writhing in pain on the floor, with D, and vomiting, and still he couldn't help himself. They are now cyber-schooling him so he is not in a place that offers temptations.

The rest of the family needn't suffer--there are plenty of gluten-free recipes for anything you could possibly want to eat, that TASTE JUST AS GOOD as the gluteny originals. Although it means more time making bread (bread machines are wonderful for this), on the other hand, it simplifies things for you as you only need to prepare one meal at a time rather than 2.

There may very well be something else going on: additional food intolerances, or an additional disease or condition, or even something going on with one of her ovaries. But you need to totally rule out any possibility of something simple, like gluten from cc or sneaking, or inadequate fiber in her diet, before hunting for something more complicated.

Did she recently receive a Gardasil vaccine? There have been a LOT of reported reactions to it, many severe, and that is not getting publicized, and the doctors don't seem to either know or admit that it's a problem, but you can find info about it at www.nvic.org.

You might try posting her typical daily diet to see if someone spots something. If she is eating a lot of gluten-free breads, pastas, etc., those have (usually) very little fiber, AND are difficult to digest. Most pre-teens don't eat enough fruits and veggies (the best source of fiber, but doctors love to tell us to eat more wheat, don't they??), anyway.

I'm sorry your daughter is going through this, and I hope someone here can find the answer for you!

[Fiddle-Faddle]

I just wanted to add a list of gluteny foods where the gluten is often not obvious:

1) Rotisserie chicken (marinated in soy sauce, which usually contains wheat)

2) Soy sauce (LaChoy and San-J Wheat-free Tamari are safe)

3) Deli tuna salad (contains bread crumbs)

4) "lite" ice creams and cream cheeses, dips, etc (contain wheat starch as thickener)

5) Rice Dream brand rice milk (says "gluten-free" on label, but isn't--it's processed with barley, which they are not legally required to list)

6) Rice Krisipies and Corn Flakes (contain barley malt=gluten)

7) various potato chips, such as Pringles

Also, although Rice Chex is gluten-free, Corn Chex is not (contains barley malt)

Many here have reported reactions to Lay's Staxx, Quaker Rice Cakes, and Amy's frozen gluten-free meals. Since those are produced in facilities that handle a LOT of gluten, it is suspected that cc is the problem.

In addition, a few of us seem to react badly to maltodextrin, which is apparently not gluten, but some of us react anyway. Maltodextrin appears frequently in ingredient lists of flavored chips. Plain chips, like Fritos, seem to be fine.

[Rosie's Mom]

Hi, I am sorry that you are having these problems. I had the advantage with my son diagnosed at 10 because I was diagnosed at the same time. When he seemed to be having problems with a food I could try it and if it bothered me too, that was the culprit. Different celiacs have different tolerances for trace amounts of gluten. A lot of foods that we can't eat, a lot of people in my local support group eat just fine. I experience a lot of stomach pain when glutened, especially below the belly button, and often localized like that. Initially I felt great with just the elimination of bread and cereal. As time when on(maybe at about the 2 month period) I seemed to get more sensitive to gluten and I had to do more and more research and eliminate more and more hidden and trace amounts. Now I can only eat food prepared in dedicated facilities. If it says processed in a facility that also processes wheat, it will make us both sick. A lot of foods that are labeled gluten free have small amounts of gluten, or even large amounts, see all the posts about Wellshire farms. It seems to me like your 8 year old is also getting more sensitive and you need to be more careful with her diet.

Be careful with contamination at school. You need to pack her lunch, but also watch where she eats. My son's best friend did a lot of spitting while eating and talking. My son started eating by himself at the peanut table (kept clean) and improved tremendously. His friends would come sit with him after they finished eating. The doctor also recommended using his own tray to protect from crumbs left behind on the cafeteria tables.

We got horrible pressure from the principal wanting us to send him in even when he was vomiting. The idiot was convinced that it was school phobia despite the doctors celiac diagnosis. I hope you aren't having problems there. He missed 49 days between getting sick and figuring out the diet.

This year he hasn't missed one day. He has been gluten free 1 year now.

Also watch out for contamination in the classroom. I had them pull his desk away when they were having snacks so that crumbs wouldn't get on his desk. There is so much eating that goes on at school, it is really hard to avoid. There is also the possibility of intentional cheating with all those pizza and donut parties, or friends sharing cookies. I don't know how much she can make the connection between eating gluten and getting sick.

Keep up your determination. This was a really difficult period for us, but now after a year things are so much better.

[Rosie's Mom]

Thanks for the list. I was under the assumption that gluten free meant gluten free! How silly of me! I always look for gluten free on a label and now a dedicated facility and now I can't even believe that?! She's had some rice dream, but not often and I've tried to be very careful about what she eats. She's not a sneaker, because she feels so miserable lately she wouldn't want to add to that.

She hasn't had the Gardisil vaccine, although her older sister has - I'll have to look into that.

Another one of her symptoms that makes me think that it is a possible other food allergy is that she has terrible eczema on her hands.

[AMQmom]

Both of my daughters are celiac and my husband and I were diagnosed "negative." We made the house gluten-free to avoid cross contamination. Each child now reacts severly when "glutened" - my 7 year old says that it hurts much more than it did before. We provide their own school supplies in a container with their names on it for their classrooms (they are both still oral and I do not want to risk her touching a contaminated implement and then putting her hands in her mouth to wiggle a loose tooth or suck her thumb) and that has worked extremely well. I trashed utensils that were wood or plastic to be safe. Watch the soaps that you are using for hands and hair - children do put hands and hair in their mouth. Watch the lipstick and chapsticks that you are wearing if you kiss on the mouth. Watch out if you eat something and have crumbs where she can possibly get them on her hands and then eat, etc. The gluten particles are sticky. Have you checked for other allergies in addition to gluten? We have one daughter with multiple allergies. I really hope that you are able to figure out what is causing the pain and able to eliminate it from her environment/diet.

[mstroud]

I'm so sorry that your daughter is still having pain! My son (8 years old next week!) was diagnosed at the end of May 2008 and has had continued stomach pain since then ... all except for about 3 weeks. I was giving him Rice Dream and finally figured out that was a 'no-no.' We then had 3-4 good weeks before it started back again. With him feeling so much better, we tried to eat out (PF Changs gluten free menu) and also traveled so I'm sure he was exposed when we traveled and possibly from the PF Changs food. It's so hard to have the continued pain! My son does say that his pain now is different than it used to be so maybe your daughters has just changed.

I agree that it sounds like there's hidden gluten in her system. Do you have a separate area in your kitchen where no gluten is allowed? Separate toasters, cutting boards, etc? What about any rice ... I know I had rice and fortunately checked it before I cooked it because it wasn't safe. Any beauty products ... shampoo, chapstick / gloss, toothpaste, etc.

I'm think I'm going to take advice of buying only products made in dedicated facilities. At leat for a while until I can get my son's pain under control! I thought Staxx were safe ... he eats those a lot. I thought they were made on dedicated lines.

Has your daughter had any problems with dairy?

I hope you find the source of her pain! I'm right there with you ... it's heartbreaking to have these kids not feeling well on a daily basis!

Margaret

[mstroud]

Rosie's Mom - I forgot to add this in my previous post! Before we figure out and then cut out the Rice Dream rice milk, his nurse and pediatric GI were also telling us that he had Functional Abdominal pain. I told the nurse that I didn't buy that and there had to be some different cause. She then said that some people just feel food going into their systems differently and maybe he was just feeling his food digest!!! Again, I just don't think that's the problem!

Good luck! Margaret

[ang1e0251]

I didn't see you say anything about milk. Many of us cannot tolerate dairy especially in the beginning. The damaged villi are missing their tips which is where latose is processed. Some can tolerate it later or some can only tolerate certain things. I am one of those. I can have butter and cheese but not fresh milk, sour cream, or ice cream. The pain is severe and your daughter's reaction sounds a lot like mine.

Ditto on the hidden gluten and being more sensitive to it. I thinks she's lucky to have such a careful Mom!! Hang in there!

[Amyleigh0007]

Lays Stax are made on a dedicated gluten free line so there is no worry about cross contamination. The website states that fact.

[Fiddle-Faddle]

Another one of her symptoms that makes me think that it is a possible other food allergy is that she has terrible eczema on her hands.

Gluten intolerance can cause terrible eczema! My son and also the son of a friend both have had this response to gluten.

However, that doesn't guarantee that gluten is causing your daughter's eczema!! (Oh, it would be SO nice to have a guarantee!!!)

Is she using hand lotion that has wheat germ oil or oatmeal in it, by any chance? I know the conventional wisdom is that you can only be affected by what you ingest, but anecdotal evidence doesn't agree with the conventional wisdom!

[mommida]

Well we've been gluten free for about five years and my daughter is having some major issues again. She vomitted blood last August (diagnosed as mysenteric something or other as a result of a viral infection) and has been vomitting sporadically since October. She said her whole stomach area hurts. Nothing makes sense as a food intolerance. Since she can eat the same exact thing - been fine and then an hour later - she has puked on her plate.

Her appointment is this Thursday. Pray we get some answers.

Laura

[Rosie's Mom]

I can't tell you how much I appreciate all of this feedback!! I've felt like we're going crazy trying to make sense of it all. I see I have a lot of changes to make to ensure that we're not accidentally cross contaminating. It's been a slow process, but I think I have to make more drastic changes. We do have a gluten-free toaster and cutting board, but have been using same knives and pots and strainers.

My daughter's diet has been largely dairy free since her diagnosis, but does take a Digestive Advantage to help with the occasional cheat, of which there aren't many.

I gave her a dose of Levsin for the first time today and her pain is down from an eight to a five she said. I'm not crazy about the idea, but would like to make her comfortable. It's awful feeling so helpless. Hopefully, these changes will help.

This forum has a lot better handle on Celiac than any doctor I've met thus far.

Thank you!!

[CeliacMom2008]

Rosie's Mom - that strainer has to go! Strainers are really hard to remove the gluten from. You can pick up a new one for a few dollars at Wal-mart.

Have you had her blood tested recently? I think that would tell you if her tTg levels were still elevated, thus glutening still ocurring.

I have to second (or third or whatever) the idea about trying to eliminate all gluten from your house if you suspect that is the problem. We are a gluten-free household (only my son is a Celiac) and truly it is not a big deal. We eat really well and I am not a basket case trying to keep everything clean. I know it isn't for everyone, but if you're trying to fix something you may need to go to drastic measures. But that depends on if it is gluten, so we're back to the blood test.

Other places to look for gluten - her lotion (especially if your slathering her up due to the skin condition), her soap and shampoo (I don't know how she'd be eating it, but lots of people swear it's an issue for them and you're probably at the try anything stage), her lip balm, the Wellshire Farms gluten-free products are under scrutiny right now and they have admitted having a wheat contamination problem, mainstream snack items (a lot of people complain about Fritos, a lot of people eat them all the time too, but again, you're at that try anything stage).

Have you thought about cutting her diet options way back to some simple, basic things and seeing what happens? That might help with other food issues.

Good luck! I know it's hard when they're hurting and you can't figure it out.

[medic8r]

i just wanted to add that your original concern seemed to be regarding appendicitis because of the location. there is a location common to most true cases of appendicitis called "mcburneys point". it was named after the physician who noted that the location of pain is at a midpoint between the ililac crest (hip bone) and the belly button. this is considered to be a common location of pain, though keeping in mind that people-especially children-can have refered pain and even ectopic pain in which they will feel the pain of appendicitis in a location other than where the appendix is located in the abdominal cavity.

also there is a sign of true appendicitis, when pressing with the tips of the three middle fingers of your hand in the lower left quadrant of the childs abdomen, this should cause pain in the lower right quadrant (location of the appendix). the reason for this is that appendicitis is an inflammation/swelling of the appendix. this swelling is not necessarily what causes the pain, but infact when that swelling causes the appendix to extend against other parts in the abdominal cavity. therefore, when you press on the left side of the abdomen by first slightly moving the skin and muscle to the left and then pressing downward, you are causing the surounding tissues to rub against the inflamation/swelling of the appendix, causing pain in the right abdomen even though you pressend on the left side. its called "someones" sign, i forgot his name, i think it starts with an "o". this is a pretty reliable sign.

however, keep in mind that nothing is constant in medicine!

[dilettantesteph]

You have been getting a lot of good feedback. I just wanted to second the vote for a gluten free kitchen. We tried to do a mixed kitchen for a year. It didn't work out very well and finally decided to go gluten free. Still, I hadn't gotten rid of all the trace sources, and the other day my 11 year old son grabbed the wrong chocolate sauce and got sick. If an 11 year old who is very careful about his diet can make a mistake like that, surely a 4 year old will have problems.

[rlbcabjm]

My 17 year old has been getting sick since Aug. We suspect Celiac, but is not confirmed. Since all of her symptoms started she has become lactose intolerant. Levison and many other medicines have lactose in them. Be sure to check all medicines for lactose and gluten.

Claudia

[Rosie's Mom]

Ok- I'm in the middle of rearranging my kitchen. Instead of separating my daughter's gluten free food, I'm separating the gluten-food to it's own area while I make the switch to a gluten-free house.

Thank you all for your help everyone. My daughter is going in for an endoscopy and colonoscopy this morning to follow-up and check for Chron's. The doctor also mentioned that some doctors diagnose a chronic appendicitis, has anyone heard of this? Her pain is pretty typical of appendicitis, but no fever and ct scan didn't show anything. Hopefully today will be revealing.

The prep was really fun!!

[khockman]

Have you considered trying the Specific Carbohydrate Diet? It's very limited but has helped my daughter much more than just gluten-free. I would highly recommend reading Breaking the Vicious Cycle--type that title in on google and you will find a website and lots of info. I find that just going gluten free is unfortunately not enough sometimes, with my daughter and with others I know who are battling this disease.

[Jaimepsalm63]

With the gluten free kitchen, my GI doc told me to watch out for the oven if it's a convection oven. He said the fan will collect gluten and then spread it to my food. We were fortunate enough to afford a double oven....my husband insisted. Every item that goes into a convection oven (not conventional) needs to be covered FULLY to prevent the gluten in the fan from flying out. He's the only doctor who told me about this.

Look not only into her products of lotions, shampoos, and such....also your husband and your products and your makeup! People who know me don't give me hugs with their hair or face touching me because they know how sensitive I am. I've even had people say I can't shake hands with them because of the lotion they just put on.

Investigate her appendix too. Don't settle for one doc's opinion if you aren't happy with what you hear. Your dd is counting on you!!

Please let us know what they find out with your little one.

I pray she'll find peace and comfort soon. I've been gluten free for over 4 years and still have the constant pain where it doubles me over. My GI doc never said anything about functional abdominal pain.....that's just people trying to get out of figuring it out IMO. I can feel when food is "processing" in my system...and it's not painful....it shouldn't be according to my GI (and I love this guy!!).

Jaime

[AliB]

Have you considered trying the Specific Carbohydrate Diet? It's very limited but has helped my daughter much more than just gluten-free. I would highly recommend reading Breaking the Vicious Cycle--type that title in on google and you will find a website and lots of info. I find that just going gluten free is unfortunately not enough sometimes, with my daughter and with others I know who are battling this disease.

I agree with Kristin - I completely advocate the SCD. Yes it is limited - but only from the foods that are contributing to the damage.

I see this all the time from people who are gluten-free but not getting better. Whilst removing just gluten may impact somewhat on health issues it does not necessarily get at the root of the problem - the Leaky Gut. Villi may heal, but if the gut is still permeable and allowing certain food molecules through into the bloodstream that shouldn't be there then reactions will occur.

For those who do not recover after gluten-free, it seems that rogue bacteria and yeasts, and even in some cases parasites may be contributing to gut dysbiosis. So much can unbalance the gut flora, stress and trauma, high-sugar, high processed-carb diets and even some other things like painkillers and some prescription drugs, particularly antibiotics.

They may kill the baddies (if one has even been given the right type of AB) but they also kill the good guys which then leaves the digestive tract open to infestation by AB-resistant bugs. The danger of over-prescribing AB's has finally been realised - only 80 years after Alexander Fleming created Penicillin and advised against that very thing!

One treatment can seriously damage the gut flora - I was given a course for a normal childhood ear infection (that normally clears up just as quickly on its own if the immune system is allowed to do its job) and went downhill from that point on. Because my immune system no longer had the right bacterial support, my next infection was worse and I needed more AB's, setting the cycle in motion.

By the time I hit 15 my flora was shot to pieces, I had raging Candida and lost all my energy. I have never seen it since.

It is only over the last 9 months since I have been following the SCD that I have started to claw my health back. Slow - but sure. It works.

There is a thread in the 'Other Food Intolerances' section for anyone who would like to know more.

Those of us following it and getting better keep posting about it on different sections and it is very gratifying when we see others taking up the baton and passing it on.

I want to see me, and my husband and my children and my grandchildren well - not just gluten-free.