Ruth

Adevoto.

Has your daughter had a biopsy? My blood tests were 100% normal. My biopsy was 100% abnormal!

My diagnosis was delayed because of my blood work being normal. While the blood test does help with the diagnosis of some with celiac, a negative blood testdoes not rule out the disease completely.

Ruth

Hi,

We never ended up having my son's blood tested for celiac again. He caught the chicken pox right after his 6-year check up and then we left on vacation.

So... we just put him on the gluten-free diet to see if it would help his headaches.

He started the gluten-free diet on June 27th. His complaints about headaches have been drastically reduced. Previously, he would tell me all-day-long (no kidding) every day that his head hurt. This week I have only had him mention that his "head hurts" twice. Quite a change! I have not checked his height or weight yet.... based on the way his clothes are fitting and his appearance I don't think there has been much of a change. We will continue the diet and hope for continued improvement.

Thanks for all your responses! I'll continue to update his progress, just in case any one else finds themselves in a similar situation.

Take Care,

Ruth

Try Nature Made.

wwww.NatureMade.com

I have used the iron and Essential Balance. They list gluten free, yeast free, dairy free, etc. for each product. I'm not sure if they have liquid.

Also, Trader Joes had some liquid gluten-free vitamins.

Hi Michelle,

My daughter was also 7 when she was diagnosed.... completely asymptomatic. She was diagnosed by blood test and biopsy in December. We were shocked. She adjusted pretty well to the diet. I just told her it was something she had to do so she wouldn't get sick like I did.

I definetly bent the rules on giving her junk to ease the transition a bit. I made Danielle's gluten free brownies, bought gluten-free candy, had ice cream sundae parties instead of bithday cake, brought root beer floats to friends' houses for dessert, etc. All of us (2 gluten-free; 3 non gluten-free) eat only gluten-free snacks and desserts. I do keep one small shelf for regular bread and non-gluten-free nutrition bars that my husband and two other children enjoy. Other than that, all the other food in the house is gluten-free.

Not to say we threw healthy eating out the window. She has always loved fruit, veggies, meat, potatoes and rice .... so I kept up with these "regular" foods and eliminated all gluten-containing food from the house.

Now, when the others want regular pizza they order take-out my daughter and I have gluten-free pizza. We didn't do this right away. It was too hard on her at first... but now she is o.k. with it.

At school, my daughter kept a stash of gluten-free cupcakes in the nurse's freezer for improptu b-day parties, etc. She also had a drawer in her teacher's desk where she could keep a stash of non-perishable food for whenever she couldn't have what may have been passed out by a guest reader or guest.

I have also tried to empower her to make her own gluten-free food choices... after almost 6 months she is getting pretty good at it.

So far so good... although about once a week we still have the "If you don't know what's in it -- you can't have it speach"

Hope this helped. Take Care,

Ruth

Hi.

ColdKelly, just wondering.... how/why was your daughter diagnosed? Was she tested because you or another family member has celiac, or did a doctor conclude that her headaches may have been a sign of celiac disease and therefore tested her?

Thanks for the responses!

Ruth

An article ran today in the Boston (MA) Globe... thought you may be interested. Here is the link:

Open Original Shared Link?

Thank you all for your responses!

My son just had his 6-year check-up... we are going to have his blood tested for celiac again, and then, regardless of the results, I'm going to try the gluten free diet for 3-4 months and see if it helps his headaches. Based on your replies, it seems like there could be a connection. Also, I like the food diary idea... I will start one immediately to see if any other foods seem to be connected to his headaches.

Thanks again, I'll post an update in a couple of months!

Have your children ever had headaches associated with celiac? My 6yo son has been having headaches for almost a year now. In addition to the pediatrician, we have seen allergists (he has many allergies), opthomologists, dentists, and neurologists. All his CT Scans and MRIs have come back fine (thank God) and everyone says he will outgrow the headaches. I have had a gut feeling that he, like me and my daughter, has celiac. His blood work was negative a year ago.

He also is small for his age, always has been, although he has grown consistently.

His headaches seem like sharp pains that come-and-go all day. I don't see any association with stress, reading, light, need for attention, or time of day.

Any similar experiences out there?

Thanks.

Ruth

Here's the lunch I pack daily for my daughter:

Skippy PB on Rice Crackers (the jelly slides off!)

Gogurt

Fruit

string cheese

Smartpuffs or EnviroKids bar

She never has the school lunch (never did before going gluten-free...so why start now... but we have discussed having her choose something gluten-free from the vending machines)

Also, we keep a batch of gluten-free cupcakes in the nurse's office freezer, for those b-day parties or parent readers that bring goodies in unannounced.

Her teacher also has dedicated a drawer in her desk (this teacher is wonderful!) for my daughter to keep her snacks which she can take whenever some goody is passed out that she can't have (or isn't sure of).

My daughter is in second grade and loves the independence of being able to get these snacks on her own. She doesn't have to ask... if something is passed out that she is not sure of, she says "No Thank you!" and helps herself to her 'stash' of snacks!

Good luck!

Be careful with Newman's Own dressings. I have the same list...but they are NOT all gluten-free. They are good about labeling though! So check the ingredient list. Newman's clearly lists "wheat" "barley" "malt" etc.

Kraft Ranch works for my daughter.

Hi, I know you are probably looking for a response... hope this helps.

I'm not sure about your insurance, but all the tests for my kids were covered by Harvard Pilgrim (in MA) based on 'family history'.

My kids' blood tests included: IGA, IGG and tTG.

One of my children's blood tests came back positive, and her biopsy was also covered by insurance. I don't know what EMA is...sorry!

Good Luck, let us know how it goes,

Ruth

Thanks,

I'll be ordering some soon!

Hi,

I was wondering if anyone had a good recipe for s'mores? My daughter will be attending a girl scout outing on May 15th and they will be making them. I have tried using Health Valley Rice Bran Crackers with Hershey's chocolate and Jet-puft marshmallows. They hold up well but they are small... and not quite as tasty. Does anyone have a graham cracker recipe or a good substiitute?

Thanks,

Ruth

gluten-free Mom with gluten-free Daughter

PS. There will be other food prepared at this outing... when I find out the entire menu I'll probably be be asking for more advice! So anything you know would be great!

Boar's Head brand Salami (and most of their other cold cuts) are gluten free. I believe it is only the "loaves" i.e. olive loaf, pimento loaf that contain gluten.

I received a note from them about 6 months ago stating this... you may want to contact them directly. Also, we had a nice ham at Easter from Boar's Head! It was great with one of their glazes.

I just received this email from Brigham's Ice Cream:

You recently inquired about gluten in the Brigham's ice cream. Yes, Several of the Brigham's flavors are gluten free.  Flavors that are gluten free include:

Vanilla, Chocolate, Chocolate Chip, Strawberry, Coffee, Peppermint Stick,Mocha Almond, Mocha Chip, Mint Chip, Black Raspberry, Pistachio, and Raspberry Lime Rickey Sherbet.

All Wheat flavors (ie cookie dough, oreo, mississippi mud) are processed at day end to avoid cross contamination of non gluten containing products.

The frozen yogurt is sold under the name Elan.  The Vanilla, Chocolate, Coffee, Decaf Coffee, Strawberry, Black Raspberry and Andes mint are all gluten free.

I hope this information is helpful

Hi Ryebaby,

Just in case you are filling baskets right now... I do have a list (a few months old) from the old celiac.com site that does list Just Born Jelly Beans as gluten free.

If you need to confirm their # is 800-445-5787

I hope this helps!

Happy Easter,

Ruth

Hi Emsmom,

I live in the Boston/MetroWest area. My daughter's pediGI doctor is Dr. Glen Furuta of Children's Hospital. He has appointments in Boston and Lexington. We really liked him. My GI doctor is Dr. Crimaldi in Milford, MA. He sees children as well as adults... also very good.

After a year of being gluten-free myself, and 4 months with my daughter gluten-free, I have finally managed to be able to fill my grocery cart at Shaw's (they have a great gluten-free section in the Wild Harvest section of their stores) and their store brand products are listed in the CSA Celiacs Gluten Free Product listing guide.

If you want, I can forward you my weekly shopping list! There are a lot of "mainstream" products your daughter can eat! My daughter is 8. I have to say planning meals for her (outside of the home) is more challenging than myself most days!

Let me know how much info you need!

I found the gluten-free books to be a bit overwhelming at first!

Take Care,

Ruth

Sharon,

I don't have the rash you describe, but check out the Dermatitis Herpetiformis (sp?)section of this message board. Sounds like what others have.

Take Care,

Ruth

Dear Sharon, Karina and others...

After hearing more of your situations I realize now that what I was feeling could indeed be considered "normal" for celiac. I have 3 children... and yes, the pregnancy weight came right off... in fact I used to eat as much as (or possibly more than) my 6'2" husband (I'm 5'1") and not gain a pound. I also had carpal tunnel in one wrist after one of my pregnancies, then the fibromyalgia kicked in. I craved ice constantly...and went for every imaginable test. So many in fact that when we received the Celiac diagnosis we felt like having a party! It could be so much worse.

Sharon, I'm not at all familiar with your other condidtions, but I hope that a gluten-free diet will help your pain. I understand the frustration with so many doctors... it would make sense to have all the sypmtoms analyzed together to come up with one "whole body" solution.

Karina, regarding your question about the blood screening, all of mine (IGA, IGG and tTG) were NEGATIVE for celiac. And after my biopsy the doctor said he would eat his hat if it didn't come back positive... he could see the damage during the endoscopy.

.... Also, all of my children were 2-4 weeks early, my third was the latest...after 4 months on bed rest... I have no idea if this is related to celiac, but it is another commonality.

Since my diagnosis 1 year ago, my sister and daughter have been biopsy diagnosed. My daughter had NO symptoms but elevated blood tests.

Take Care,

Ruth

Sharon,

I also suffered from anemia that was not being helped by oral supplements (also a double, at times triple dose). I'm also 38. Finally, after years of anemia and "weird" ailments... joint pain, pain in my arms, hips, legs (diagnosed as fibromyalgia) numbness in my arms and hands (I dropped everything, lost my grip easily) and eventually my legs, dizziness, etc.... I was diagnosed with celiac disease.

My blood tests were negative... my biopsy was positive.

I just celebrated my 1-year anniversary gluten-free... and I feel great! All the symptoms listed above are gone... or much better! I also had gastro symptoms but never thought to mention them to my doctor for all these years... the gastro problems were managable and "what I was used to." Now that I know how it feels to be normal, I realize I did have some "classic" celiac disease symptoms.

By the way...Nothing, except the anemia, was attributed to celiac disease by my doctors... but I'm better now!

Best of luck to you! It sounds like you may have found your cure.

Ruth

Does any one know if Claritin (specifically Claritin Redi-Tabs) are gluten-free?

Allergy season is fast approaching!

Thanks.

I have found that the Betty Crocker brand fruit snacks (a Kraft brand) are also gluten-free. Kraft will list any gluten containing ingredients on their ingredient list as well.

Has any one heard if the Brach's brand are gluten-free? I have not had success in getting a reply from them.

UGH! Thanks for the info Jessica... I think she was getting burnt out on them anyway!

Do you know what they changed?

Hi Heather,

My daughter was diagnosed in December. She is 8... so even though I have been gluten-free for a year, accomodating the diet to fit her tastes (and social events!) was a change. Here are some of our junk food staples. Many of these are from the web site posted from someone in an earlier reply. Its nice to know that these items may already be at their friend's house for a playdate snack or a sleep over breakfast!

Kellogg's Corn Pops

Post Fruity Pebbles

Barbara's Honey Rice Puffins (not the other flavors)

Dannon or Yoplait yogurt (Danimals, Gogurt) just no mix-ins

String Cheese

Ener-G foods seseame pretzel rings

Quaker Caramel Corn rice cakes

Danielle's gluten-free Brownie mix (better than non-gluten-free)

gluten-free Cupcake mix with Duncan Hines Homestyle frostings (great on any gluten-free cupcake mix!) We keep some in the school nurse's freezer for impromptu b-day parties at school)

Enjoy!

Ruth