An 8-Year Old's Symptoms

[Ashlin's Mama]

Hi! (I'm new here.) I'm hoping for verification that these symptoms are "common" in Celiac kids because after a year, I'm so tired. I've read a lot of posts that address the symptoms individually, but not all together. My daughter is 8. Last fall, we went through 3 months of tummy pain due to constipation. That was resolved, then the headaches every night started and lasted all winter. Her set of symptoms now started at the end of March - she was biopsied and diagnosed with Celiac's April 20th. I thought we were gluten-free since then (and even had 3 weeks where she felt good) but I've found out this past month we really haven't been - lots of cross-contamination or hidden sources of gluten, so now our whole house is gluten-free & I'm spending a lot of time on the phone with manufacturers or just cutting things out 'just in case'. We're switching doctors because he's just clueless. He's convinced she has IBS also, but the IBS diet makes no difference to her symptoms and in order to help her IBS, he had me give her Beano, which I did for a month, stupidly, without reading the label... it contains wheat.

Anyway - here are her symptoms. Her attacks come within a matter of seconds and are now lasting half a day when they begin in the morning (lots of missed school), and happen nearly every night at bedtime. Same symptoms every time: Horrible tummy pain, bad headache, chest pain (& sometimes feels like she can't breathe), sore throat, nausea, and her arms and legs hurt. The explosive diarrhea calmed down at the end of May and her stool is normal most of the time.

I had our pediatrician run a full panel of bloodwork (all normal), and did allergy testing to identify food allergies, so they have been cut out. The dietician suggested cutting out dairy which we just started. What else can I do? Someone on another post mentioned a basic diet - what foods do you start with? Is there any med I can use to alleviate her pain? Tylenol/Motrin doesn't touch her headache or body aches, Ranitidine doesn't help her chest pain (believed to be indigestion), and I've tried just about every antispasmodic to help her tummy (again, the ped. gastro. believes she has IBS) to include Bentyl, peppermint, fennel, anise, colic water, chamomile - nothing helps. We've tried anti-gas medicine to no avail. Sore throat drops help her throat a little, but that's it.

The diet I can handle - the daily pain she's in, I can't. To those of you that have this beast mastered - am I missing something? Thanks so much!

[Mizzo]

You will get lots of response but I am chiming in first.

My 7 yr old girl was misdiagnosed for 1 1/2 yrs and finally tested and came back positive thru biopsy in April 2010 . It took nearly 2 months for the Tummy pain to disappear after going gluten-free with very little cross contamination. NO MEDICATION that I am aware of (short of narcotics) can take care of the pain as it is an Autpimmune disorder. I do give my girl TUMS for the tummy pains but that is a Placebo for her.

I did reduce dairy for the first couple weeks because I was told it could irritate atrophied Villi. Otherwise we waited till she healed.

Good luck, I will also watch this thread to see if anyone found a pain relief for Gluten reaction.

[Rissmeek]

I don't have a child but when hubby has been glutenated I might as well have a child.

When it gets bad, he goes on a white rice diet. He swears it's the only thing that soothes his tummy. It's not very nutrious but it doesn't stop the pain.

When he first went gluten-free for the second time we found a lot of things he couldn't tolerate. Milk was one of them but so were eggs. He could handle an egg as a binder, say in meatloaf, but to have a couple of eggs for breakfast would kill him. It took a good year before he could handle milk products again and still now it's in moderation. It took almost 3 years before he could eat an egg. Again it's in moderation. Too much of a lot of things cause him issues. Too much sugar, too much pop, too much dairy, too much greasy food, all can mean tummy trouble.

For a basic diet I'd go with whole foods. Raw fresh organic veggies and fresh non-processed organic meats. Bland, bland, bland.

[mommida]

My daughter was diagnosed with "probable" celiac when she was 17 months old.

Everything was fine until she was six and it seemed just like glutening symptoms. Exceopt it was getting worse and worse until she was vommiting about 5/6 times a day. She was also getting bad headaches and her breath was smelling bad. (kind of smelled like puss) Her tonsils were very large. She was diagnosed with eosinophilic esophagitus after another scoping with biopsy. make sure the pathology report is going to be looking for eosinophils.

It is possible to have Celiac AND another auto-immune problem. Please find the best specialist you can get to. Discuss ALL the symptoms. Find out what are on the doctor's list of possible situations are happening. Find out what an endoscopy with biopsy is going to rule out or in.

At this point there are a few "usual" suspects that cause these symptom. (celiac, H. Ploryi, parasites, eosinophilic (can be affecting any part of the digestive track), congenital defect, I have heard even a hernia, and I am sure there are many more things I can't remember.

[Ashlin's Mama]

Thank you, Mizzo, for the info. Hopefully in a couple of months she'll be pain-free - if we can ever manage to keep her gluten-free.

[Ashlin's Mama]

Rissmeek - When your husband has an attack, does it come and go or is it constant for a few days? How long does your husband stay on a white rice diet? I'm willing to try about anything. Also, the foods he couldn't tolerate - was there an immediate reaction? With my daughter's food journal, I haven't been able to identify a particular food always connected with her attacks. She could have the same meals two days in a row and today have an attack, but tomorrow be fine. "Bland, bland, bland" - I'll try it.

[Ashlin's Mama]

Thank you, Mommida. I've written down the other possibilities (which I haven't heard of before) and will discuss them with the newly referred specialist. Hopefully, he's better than the last...

[weluvgators]

Do you have a local support group for celiac and/or gluten intolerance? They may have some recommendations and suggestions for you too. For one of our daughters that has the more prominent intestinal symptoms, a heating pad held to her stomach is how we have handled past episodes. She would curl up around it. I am sorry to hear of your daughter's pain, and I hope you find some relief for her soon.

[Rissmeek]

Rissmeek - When your husband has an attack, does it come and go or is it constant for a few days? How long does your husband stay on a white rice diet? I'm willing to try about anything. Also, the foods he couldn't tolerate - was there an immediate reaction? With my daughter's food journal, I haven't been able to identify a particular food always connected with her attacks. She could have the same meals two days in a row and today have an attack, but tomorrow be fine. "Bland, bland, bland" - I'll try it.

It can come and go or it can be constant. He usually does 3 meals of rice when he's not feeling well. The foods he can't tolerate aren't always right away. It took us a long time to figure out what was causing it. We'd eat the same meal over and over and over removing just one item until he wasn't sick. Then after about 6 months of no problems we attempted to add foods back. Like I said though he still has problems if he has too much of anything. Here is an odd one for you, to this day, 3 years of being 100% gluten-free, he can't do iceberg lettuce. He can do romaine lettuce though.

[Ashlin's Mama]

Just a quick update. Ashlin has had the worst attack since spring the past 2 days. Same symptoms, but mega intensified & lasting much longer. I think the headache hurt more than her belly this time though. Our pediatrician gave her 2 shots last night: Toradol for pain and Ondansetron for nausea. Neither provided any relief at all.

And then late this morning, after a good 30 hours of pain, it just disappeared and up she jumped ready for school. Our ped. told us to take her to the ER if it gets that severe again. I honestly don't know what caused it. We have been so, so restrictive as to what she eats and touches. Her teachers at school and church are both very aware and careful - beats me. Anyway - thanks for everyone's suggestions. We've tried the hot water bottle/heating pad/soaking in the tub... Please keep the suggestions coming. Something is bound to work.

Loucinda

[mommida]

It has also been suggested that my daughter's ongoing headaches and abdominal pain is due to abdominal migraine.

I'm not sure how confidant I feel in the medical diagnoses of abdominal migraine. You would be referred to a nuerologist for further testing.

Tracking symptoms in a food journal, can take up to two weeks after the "trigger" food. i.e. an eosinophil remains active for 12 days once activated.

[T.H.]

If you're trying to see if it's gluten? Here's some ideas for the REALLY sensitive celiacs (which we are starting to realize my daughter is).

- I'd call up any company you get a grain/flour from and see what level of gluten they allow. If it helps? I was just doing that, because my daughter was reacting to some and I was trying to determine what her gluten threshold might be. We found companies that have gluten free facilities, and some tested to 20ppm or less, and some tested to 5ppm or less, so a big difference if your little one is REALLY sensitive. You're welcome to send me a message through my profile and I'd be happy to share what info. I got, if it helps you along the way. :-)

Also, things we've found out:

- pesticides and coatings on fruits and veggies can have gluten as a binder. Most people don't react. But some do, usually if your child eats a LOT of the fruit that has a coating. My daughter was doing this with apples, and we thought for a long time it was fructose. Then I learned about the coatings, we found apples that didn't have it, and she doesn't have a problem with those. You can ask a farmer at a farmer's market if their produce has coatings and try those to see if your daughter is good with them.

- fertilizers, chemicals, or mulch that have gluten in them can contaminate the veggies that are low to the ground. Again, little one would have to be really sensitive, or eat a lot of them, to notice any effect.

My daughter doesn't get headaches, but I most definitely do, and from very minute amounts, so it's a symptom that can definitely happen.

[weluvgators]

Someone on another post mentioned a basic diet - what foods do you start with? Is there any med I can use to alleviate her pain? Tylenol/Motrin doesn't touch her headache or body aches, Ranitidine doesn't help her chest pain (believed to be indigestion), and I've tried just about every antispasmodic to help her tummy (again, the ped. gastro. believes she has IBS) to include Bentyl, peppermint, fennel, anise, colic water, chamomile - nothing helps. We've tried anti-gas medicine to no avail. Sore throat drops help her throat a little, but that's it.

The diet I can handle - the daily pain she's in, I can't. To those of you that have this beast mastered - am I missing something? Thanks so much!

How is she doing? I was skimming through again, and this stuck out at me - my kids have been unable to find a medicine to touch the pain they are in when a gluten reaction happens. It is awful. Heat packs, ice packs and cool, wet cloths have been the most effective. We also use homemade lemonade - fresh squeezed lemon juice, honey and salt in water. I hope that she is doing better now.

I was curious if you saw a surge in symptoms with the start of school? It seems that we struggle in the school setting, regardless of how hard we try. We continue to try and figure it all out, but my super silly girl that was *fine* all summer long is now a non-stop case of "mystery" ailments - insanely itchy rashes primarily, but bad cases get us excruciating leg pains. She is also having horrendous sinus issues (she has NO "allergies", never had them before, but similar symptoms have been seen with past identified gluten exposures). . . and I am "blowing off" the behavioral changes. . . she is just *different* when she is constantly getting exposed. Airborne gluten is a really hard one for my other daughter that is predisposed to headaches from gluten exposure. Most of our doctors have NO IDEA what to do for us. They just call us "uniquely interesting" . One of our doctors believes that this exquisite sensitivity is a symptom of poor intestinal function. We have had to supplement and medicate both girls this year in our efforts to make them more tolerant of school. I don't know if it will work or not. And I don't know if is good or bad for their future health to take this approach (none of our doctors seem to know either!)

But we found our primary relief in adopting a whole, unprocessed foods diet. Our oldest daughter was holding out on some of her "gluten free" processed foods until eating them for a few days in a row and landing herself in the hospital. We don't even have discussions anymore about trying those foods again. She has proven many times over that she is not currently able to generally consume processed foods, regardless of their "gluten free" status. We were finally able to identify that she has an intestinal infection that I believe was made even worse following her hospitalizations . . . (they were unable to identify it there or in our many consultations with specialists both before and after her hospitalizations!!). I remain hopeful that treating that infection will be successful and she will be more resilient to incidental gluten exposure . . . but I am not holding my breath!

I hope that you have found some relief for your daughter. This beast is not something easily mastered, especially in America today! And it takes lots of times, and for us a whole lot of baby steps (we continue to make more baby steps daily). Did you still want ideas for finding a good baseline diet for your daughter? If you could share what foods she is avoiding that would be helpful. We are gluten, dairy and soy free, but we also avoid peanuts and are super duper careful with our food sourcing.