Need Some Parenting Advice

[ValentinoMom]

Where to begin? I just took myself and my 4 and 6 y.o.s off gluten. My 6 y.o. has had various issues since infancy that raised red flags, but our doctors have never been overly concerned. One pediatrician brought up gluten intolerance as a possible cause last year, and I took him off gluten. That didn't last too long, though, since Grandma took my kids out for pancakes, someone else gave them Dunkin Donuts, yadda yadda yadda. Long story short, I got lazy and went back to gluten--which may have been a blessing in disguise, since a few months ago I started feeling quite sick every day, and I noticed sudden changes in my 4 y.o. daughter's behavior as well as drastic changes in her digestion/appetite. For a while I just thought we'd picked up a bug, but then I realized that her always-healthy-clean B.M.s had turned into my son's sticky, smelly mess. Gross, I know.

First, do you recommend that I get tested first? I'm trying to think of anything I can do that will avoid needle sticks for my kids. Does Enterolab take insurance? I'll spend the $200 if it's accurate and worth it, but if insurance covers it--even better.

Second, I need advice about how to explain to my kids about possibly not having gluten for the rest of their lives. My sweet son burst into tears last night at dinner time. He asked me when he can have gluten again, and I told him that IF gluten winds up being the problem--which we haven't confirmed--that we won't have gluten again...at all. I feel terrible. I couldn't sleep last night, and I'm on the verge of tears. I'm a nurse, and I felt that talking openly and honestly about the possibilities is a good thing. My husband thinks I gave too much info too soon and in an insensitive way. Any advice? I'm just so sad for my kids right now.

[Heidi S.]

Check out the "Eating Gluten Free with Emily" book on amazon. I am not a parent so I can not really help but with my niece they told her if she ate that her tummy would hurt. She felt so sick getting gluten that she understood. We also put pink stickers on everything that was gluten free for her in the house. She felt special and hated being sick. Other than that we got her some books that we read to her and spoke to the school.

My sister had doubts and felt guilty for taking something away from Chloe. However now that she is gluten free and thriving, upon getting glutened and seeing her daughter sick was a solid, "I am doing this for the right reasons." It is sometimes no fun being gluten free but it is worth a healthy life.

I would get the testing done before going gluten free for best results and school purposes. But you may need to buckle down and go all the way. Both my nieces grandparents are on board and the entire family. All the women in my family eat gluten free to support me and my niece. If it is gluten intolerance or celiac it is a medical necessity not a choice, in my opinion.

Try the stool sample test, no needles. But a genetic test for HLA-DQ2&8 would rule in celiac or out. They can run a blood test for celiac panel at the same time but I don't trust them very much.

Best of luck, hope it helps, we are having problems getting a diagnosis for my niece and I but hang in there! If they do have to go gluten free, they are suffering now and this is not a punishment, you will be doing the right thing! Welcome to the forums

[ValentinoMom]

Thanks for the advice. In my exhausted stupor this morning, I failed to mention that celiac is on my radar for all 3 of us for some other glaring reasons. My husband's Italian family has generations of various "sensitive stomachs," "irritable bowels" and ulcerative colitis on both maternal and paternal sides. My family has autoimmune problems. My brother has psoriatic arthritis (and has suffered from digestive distress his entire life), my 13 year old niece has suffered from bloating and belly pain since infancy, and my mother suffered for decades with GI problems before being diagnosed 5 years ago with Crohn's. I've had an ongoing array of illnesses and symptoms for many years, which at first blush could appear unrelated, but I knew there was something bigger going on. My family doc agreed last year and referred me to a dermatologist and a rheumatologist. By the time I got to the derm, most of my rashes had cleared up thanks to some hydrocortisone, so I was brushed off as a hypochondriac nurse. By the time I got into the rheumatologist, my most severe symptoms had eased up tremendously, which makes diagnosis that much more difficult. That's how it happens for me: in flares. She suspected Lupus, and I had a fairly comprehensive autoimmune panel run. It showed that there is indeed something autoimmune going on, but the results weren't conclusive. She wants me to keep monitoring all of these crazy symptoms and get to her when I feel really sick, so she can get a clear picture 1st hand of what's happening. So, as you can see, this whole gluten intolerance question hasn't really come out of the blue. I guess I just need to hear from some real life gluten experts and a good kick in the butt to get to the doctor. Rheumatologist? Gastroenterologist?

[mommida]

Hi

I know money may be tight but everyone should have their own testing done. EnteroLab isn't well respected by doctors. Genetic testing isn't fully covered by most insurances. In our experience genetic testing is NOT 98% accurate either.

The kids don't have to cry, you don't have to feel guilty there is plenty of gluten free food. If your kids are having symptoms, they will feel better gluten free and will want to stay healthy. ALWAYS keep some really great gluten free replacements snacks handy. They will have no problem eating their gluten free item of their choice when other kids are eating gluten.

Mainstream breakfast cereal....

Fruity Pebbles

Cocoa Pebbles (make rice krispie treats with these cereals if you can handle all the sugar)

rice chex

berry berry kix

honey kix (the closest thing to a graham cracker taste that I remember)

Love gluten free pantry baking mixes.

Gluten eaters love the GFP brownies so much I have to hide them.

Tinkiyada pastas (wait on the pasta for tast buds to adjust to gluten free)

There is way too much junk/candy food to even start that list right now and since it is close to Halloween some one is going to post it soon.

Gluten free doughnuts do exist. Celiac specialties in Chesterfield,MI makes great doughnuts and ships out to health food stores or maybe a private order. Specialty products are pricey.

Good luck with testing and you can learn what you need to know from this site.

[ValentinoMom]

Thank you so much. I know I probably sound crazy right now, and if I was talking to one of my own patients, I would be the voice of reason. Right now, though, it's just all so daunting as a mom. My kids actually like a lot of the gluten free foods out there, and my 4 year old is pretty mellow about the whole thing--she just wants to feel better. I think my 6 year old has felt unwell for so long--basically for 6 years--that a part of him is afraid there is something really WRONG with him. And...he's sad he can't have his favorite Raisin Bran Crunch! Wait until I break it to him that McDonald's is not an option!

[ang1e0251]

You know, you can substitute most things for kids so their menu isn't so different from before. I think it's more important that they know their world isn't going to explode if they go gluten-free. You being upset will make it more upsetting for them. If you act like it's no big deal, they will not feel so anxious.

And by the way, I go to McDonald's frequently. Double cheesegurgers with no bun, please. They are used to it, no matter which one I go to. No fries, but they could have the apple slices.

You are a great mom but realize that life is going to challenge your kids and your job is to teach them healthy and positive ways to deal with lifes ups and downs. You will.

[EmilyR83]

I would get the testing done at the doctor. My insurance paid all but 44 dollars of the testing-they paid like 214 dollars worth. That was through quest.

[Heidi S.]

Thanks for the advice. In my exhausted stupor this morning, I failed to mention that celiac is on my radar for all 3 of us for some other glaring reasons. My husband's Italian family has generations of various "sensitive stomachs," "irritable bowels" and ulcerative colitis on both maternal and paternal sides. My family has autoimmune problems. My brother has psoriatic arthritis (and has suffered from digestive distress his entire life), my 13 year old niece has suffered from bloating and belly pain since infancy, and my mother suffered for decades with GI problems before being diagnosed 5 years ago with Crohn's. I've had an ongoing array of illnesses and symptoms for many years, which at first blush could appear unrelated, but I knew there was something bigger going on. My family doc agreed last year and referred me to a dermatologist and a rheumatologist. By the time I got to the derm, most of my rashes had cleared up thanks to some hydrocortisone, so I was brushed off as a hypochondriac nurse. By the time I got into the rheumatologist, my most severe symptoms had eased up tremendously, which makes diagnosis that much more difficult. That's how it happens for me: in flares. She suspected Lupus, and I had a fairly comprehensive autoimmune panel run. It showed that there is indeed something autoimmune going on, but the results weren't conclusive. She wants me to keep monitoring all of these crazy symptoms and get to her when I feel really sick, so she can get a clear picture 1st hand of what's happening. So, as you can see, this whole gluten intolerance question hasn't really come out of the blue. I guess I just need to hear from some real life gluten experts and a good kick in the butt to get to the doctor. Rheumatologist? Gastroenterologist?

Your story sounds very similar to mine. GI problems and severe "IBS" all my life. Irish women grandmother has autoimmune, mother and sister primary immune. History myself of rashes, strange kidney infection, thought to have lupus in college came back something auto but not quite enough to diagnosis. Joint pain when to rheumatologist thought to have rheumatoid arthritis. Test came back high inflammation but vitamin D deficiency instead (as an outdoor aquatic director). Then ended up in hospital with intestinal infection, sent to Gastroentronologist, thought to have Crohns. From there escalation of weight loss, gallbladder removed, and chronic fatigue, couldn't even work. All to realize that is was Celiac (still waiting for official diagnosis) and significantly better from where I was after going Gluten Free. Always knew it was something autoimmune but couldn't find the right one!

All I can say is what are you waiting for? What other signs do you need for yourself and your children to start feeling better? I may never get my diagnosis but will never go back to the feeling of Gluten. Hang in there it is the right decision to pursue this! Your children will learn a valuable skill in self preservation and constraint.

[The Kids Folks]

Thank you so much. I know I probably sound crazy right now, and if I was talking to one of my own patients, I would be the voice of reason. Right now, though, it's just all so daunting as a mom. My kids actually like a lot of the gluten free foods out there, and my 4 year old is pretty mellow about the whole thing--she just wants to feel better. I think my 6 year old has felt unwell for so long--basically for 6 years--that a part of him is afraid there is something really WRONG with him. And...he's sad he can't have his favorite Raisin Bran Crunch! Wait until I break it to him that McDonald's is not an option!

Believe it or not Mc Donalds IS an option - double cheeseburger no bun AND french fries!! Mc D's has a dedicated french fryer so no cross contamination with breaded foods. I would avoid Burger King and some of the other burger joints! There are lots and lots more gluten free accomodating places out there. We recently found out that Davanni's will "top" gluten free crust for us if we bring it in. Most restaurants will work with you if you call or email a few days in advance!

Both of my kiddos are gluten/wheat intolerant determined by diet! We have been lucky with our current peds who believes in starting with diet and working your way from there. We have also had tremendous luck with the schools - you shouldn't need the "diagnosis of celiac" so long as you have a written note from the doctor stating that your child has a wheat/gluten intolerance.

I have also found a fabulous flour on line - so that I can bake all of our favorite recipes - including sending gluten-free/WF cupcakes to school so that my kiddos can have bday treats with the rest of them.

I guess I've gotten to the point that I can't complain my kids are healthy and this is now our new reality!!

The kids folks